The Daughter Chronicles

Mia's g-tube is fully functional!

2012-01-16T17:44:00.006-07:00

Yes, this past Friday, Mia went down to Phoenix Children's Hospital and the surgeon sliced her open, placed a valve that leads directly to her stomach, and called it a day! Then we attached a tube, and the fun feeding began!

Her surgery went perfectly well. She was in there less than an hour, but of course she had to stay overnight in the hospital. They gave her Pedialyte during the night, just to make sure everything was going well and to keep her hydrated, then in the morning they had a dilemma. No one had spoken to the nurses about what she was allowed to have. I spent Friday with her, and then Krys went in early in the morning (it was quite difficult convincing Krys she didn't need to spend the night in the hospital, but Mia didn't care if she was there or not), so I missed a lot of this. Krys said that a dietitian showed up and determined how much she would need based on her weight and age, but there was also some discussion about whether she could actually eat solid foods or not. I'm a bit baffled why her gastroenterologist was not looped in on this; I have to call her tomorrow, and I'm not certain if it was my job to get something in place before this. We'll see.

We also had to wait for a pump for the tube. We have done this before, back when she first got out of the hospital and had a tube going to her stomach through her nose, but we assumed we would be getting a fancier model almost nine years later. No one had actually ordered anything for her, which was somewhat vexing. She wanted to leave, obviously, and after a while, she was perfectly able to leave, but we didn't have her equipment. I'm not sure if any of you have ever been admitted to the hospital, but it's frankly astonishing how hard it is to leave the hospital once you've been admitted. We knew this from three years ago, when it took something like 24 hours to get her out after her hip surgery, and this time we thought we were ready. Well, we got her out a bit sooner, but it still dragged on because the pump took a while to arrive, and then we had to wait for a representative of the company that provided it to show us how to work it. It turned out we didn't need to wait; it's fairly easy to operate. Sigh.

So Mia finally got out around six o'clock at night, after sitting in her bed for over 24 hours. She wasn't happy, but at least she was home. Since she's come home she's had some issues - she had surgery, after all, so she's very sensitive and in some pain. We're hoping she can go back to school tomorrow - she seems okay for long stretches, and we think that ibuprofen is sufficient to deal with her pain. Yesterday we gave her some stuff through the tube - we have our high-calorie, high-fiber drink that she used to actually, you know, drink - and she was fine with that, but this morning she threw up a bit at breakfast. Later we did give her some more, and she was fine with that, so I assume there will be an adjustment period. As her surgeon said, the good thing about Mia is that she can still eat regularly, so we can gradually get her used to it and not fear that she's going to starve. I'm calling the doctor tomorrow to get some advice on a plan of action.

Feeding her is remarkably easy - we just put the tube in, hook it up to the pump, and set the speed for the feeding. We slowed it down today after she threw up, and she had no problem with it. Giving her medication through the tube is easy, too, which is nice. She hasn't messed with it yet, although she has told us a few times that she wants it "off." There's some dried blood around it that we've wiped off a couple of times, and I guess for the next couple of weeks there's a danger of some oozing (blood and stomach acid, as far as I know), but that's normal and as long as you clean it off, it shouldn't be a problem. She also has an incision in her belly button because they put a tube through there during the surgery to keep the area clean. Krys has had an incision in her navel before and she says that's what's probably hurting Mia the most. Not fun!

We're going to try to do all her feeding at home, mainly because if she has the option at school, she will soon learn to take it instead of actually eating. We'll see if we have the time to get everything in her at home - we'd like to do the entire thing at night, but then we have to worry about reflux and vomiting and whatnot - but that's something we'll worry about later. Right now, we're just trying to get some into her, get her used to it, and get her healed. It's never fun to get your belly cut open!

Anyway, I have pictures!

Here's Mia in her hospital bed. She doesn't, as you can tell, look happy:

Here's the valve. Note the incision on her belly button.

Here's the tube attached to the valve:

So it's a brave new world here in the Burgas household. Should be groovy. I'll keep everyone posted!

2011 wasn't very good; maybe 2012 will be better!

2012-01-01T18:37:00.002-07:00

I figured out that Mia had four good months this past year. The first four were terrible - after gaining some weight at the end of 2010, she simply decided to stop eating a few days into the new year, and this lasted through April. Then she went to the rehab clinic in Pennsylvania, and she got better. Her eating got better, but then in August her muscle tone started to get worse and worse, to the point where she can't stand up anymore even though in July she was walking (with help, of course, but she knew what to do and her legs were straight). Even though her tone was getting worse, she was still eating, until November, when she stopped eating again. So she wasn't able to stretch her legs AND she was losing weight. Fun times!

So 2011 wasn't that good. We're taking steps to remedy it in 2012. On 13 January she's getting a G-tube installed in her stomach to help with her eating issues. We've basically had enough of fighting her, and the tube will alleviate some of that. Her gastroenterologist told us that we could still feed her by mouth and this would just pick up the slack, so we'll try that. The frustrating thing is that there's no reason why she can't eat - she just doesn't. We really hope that we can get her weight up to something respectable, because we think it affects so much else in her life - she's so tired a lot, and she doesn't work at therapy as well as she could, and we think it's because she has very little energy. Stay tuned - I'll be writing more about the G-tube soon enough.

Meanwhile, on 20 January she'll be getting a new splint for her hand. This will help keep her wrist straight so that she doesn't develop arthritis in her wrist. Fun! The orthotic guy who has designed all her splints thinks he can make a very good one, something that goes past her elbow so, if we want to, we can lock her elbow wherever we want it. This is handy because when she sits in her wheelchair, she still tries to lean to the left. If we can put her splint on and lock her elbow at a 90-degree angle, she'll be forced to sit up. She eats much better when she sits up, too. It will also help with moving her chair - we can lock it so that her arm can't bend past a certain point, and then she can use it to move the left wheel of her chair. We hope.

We're still thinking about options for her high tone. She's doing pretty well on her baclofen, which relaxes her muscles, but it's not relaxing them as much as we'd like. We're probably going to have to surgically remove some of her muscles in her legs, because they're all pulling too hard and removing one will ease the pull. Plus, we're probably going to have to put her legs (or at least her left leg) in a big splint that will keep it straight. When we pick up her wrist splint on the 20th, I'm going to talk to the orthotic guy about that. We'll need something that we can put her in when her legs are bent and that will push her legs straight. It's extremely difficult right now to stretch her out, believe you me. Having a splint to help would be very nice.

So we're trying different things. If she doesn't get her legs straight fairly soon, she'll suffer a contracture, which means the muscle will be permanently short and it will be impossible for her to straighten her leg. Nobody wants that! Plus, we don't want her to, you know, starve herself to death. So we're hoping we start 2012 on a better note than these past few months, as they haven't been fun. We'd love to have a healthy and strong daughter as the year progresses!

The Christmas weekend was busy

2011-12-31T15:32:00.012-07:00

Yes, it surely was. On Friday 23 December, we loaded the kids in the van and headed northward toward Flagstaff and then westward toward Williams, where we would get on the Polar Express. Yes, every year the Grand Canyon Railroad has a Christmas train based on the book, and this year Krys made reservations for it (she had to make them in January; the train fills up fast). So this year, we were off!

We were hoping the weather wasn't that bad, and it wasn't. Sure, it was in the mid-30s during the day, colder than we've been used to for the past decade, but there were no clouds in the sky and the sun was ever-present. The drive north and south was somewhat annoying, mainly because going anywhere with Mia tend to be annoying - she's constantly saying she wants to watch TV, and if we happen to be playing a DVD she wants to see, she switches over to saying she wants to go home - but it's always nice to head to the northern part of the state, where the landscape actually looks interesting rather than blasted by God.

The train ride was fun, I guess. We had a buffet dinner beforehand, and then took the 5.30 ride north. You ride about 20-30 minutes to the "North Pole," a collection of wooden façades with lights strung across them, and then you head back, but this time Santa comes on board the train and hands out presents - sleigh bells, keeping with the book. We also sang carols as we headed back. Going north was nice because the sun hadn't completely set yet, so in the west the horizon was orange while the rest of the sky was black. It was pretty neat.

We had only one hotel room, so sleeping arrangements were fun. Mia and Norah usually sleep in the same bad fairly well, but Mia kept bothering Norah and Norah was a bit wound up from the ride anyway, so eventually we left Mia alone to fall asleep and went down the hall to the pub to relax. Norah enjoyed being out and about with Mommy and Daddy late at night, I can tell you. In the morning, we had a breakfast buffet, and then we were off!

Christmas was the usual affair - presents, cats and dogs acting weird, Mia latching onto one particular present and never giving it up - and we had a good time. Norah got some nice gifts - a Barbie beach house, Harry Potter Legos, a "Monster High" doll (she got Frankie Stein), the board game Operation - while Mia got a new "computer" - a Leap Frog one - and a combination guitar/piano. She LOVES the computer. As usual, we got some new DVDs that she doesn't want to watch because she hasn't memorized them yet, and she doesn't realize she needs to watch them 40-50 times before she memorizes them. Oh well - she'll get around to it. Krys and I got each other presents, but not many - we've been married too many years to worry about getting presents for each other for Christmas. My one present to her was a food processor, which she really wanted, so I guess I did okay.

Anyway, below we have some photographs and videos of the train ride and Christmas. I was going to film some of the train ride, but I never got around to it - I was holding Mia for the ride back, so I really didn't have a chance, and Krys tends to forget about it if no one reminds her. The videos for Christmas are a bit long; I can't imagine they'd be of interest to anyone, but I'd feel bad if I didn't post them!

Anyway, 2011 wasn't the greatest year for Mia, but we're hoping 2012 will be better. In January, especially, we already have some things lined up that we hope will help her a lot. But that's news for later! I hope everyone had a nice Christmas and New Year and whatever else they choose to celebrate this time of the year!

Norah's winter concert went well

2011-12-20T08:58:00.006-07:00

If you don't believe me, watch it yourself!

Norah's concert was last Wednesday, and we had a nice time. She got dressed up all fancy,

which she enjoys, and we were off! Mia, of course, is never happy about doing anything that doesn't involve watching television, but Krys told her she could sit on Mommy's lap, which made her happy:

Norah, of course, is always ready to smile when she's getting her picture taken, even if she hasn't quite figured out how to make it look natural:

The kids always seem to have a good time. The kindergarten sings by itself, and then the 1st and 2nd grades sing together, the 3rd and 4th together, and then the 5th and 6th grades together. They all did a good job, even though, of course, you really can't say they sounded great, mainly because of their youth. One girl in 6th grade had a solo, and she sounded like a future American Idol (not only was her voice good, but she had that vibrato in her voice that's all the rage among singers these days), but in general, it's more a nice time than a chance to hear good singing. Of course, as always, I was most disappointed with the audience. You can hear it a little on that video - the buzz in the auditorium during the singing. That wasn't only kids - far too many adults were talking while the kids were singing. Don't even get me started on the rudeness of adults these days.

Norah enjoys singing - I don't know if she'll do it when it's not mandatory, but for now, she likes it. And that's all that matters, really!

Mia enjoys her television

2011-12-09T15:51:00.002-07:00

For a while, we had no DVD player - we had one from the late 1990s, and it finally died. So while we were waiting for my father-in-law to send us our Christmas present - a Blu-Ray player - Mia had to watch DVDs on my computer. One day she was having a grand old time singing along, and I thought I'd film her. It's been a while since I filmed her having fun.

She's singing along to the Wiggles, by the way. I know the sound quality isn't great and Mia tends to not annunciate terribly well, but toward the end you can understand her telling Jeff to "wake up" - Jeff, of course, is the narcoleptic Wiggle whom no one ever seems to think needs a CT scan or something to see what's wrong with him. Poor Jeff!

Anyway, Mia: Still cute. Of course you knew that!

Mia visits the doctors!

2011-12-04T12:12:00.002-07:00

This past week, Mia visited two of her doctors. One thing you never think about when your child doesn't visit a lot of different kinds of doctors is how frustrating it is listening to different doctors recommend different things. But that's what we got this week!

First, on Monday we went to see her physiatrist. She liked the progress Mia has been making now that she's taking baclofen - her elbow is looser and her leg stretches a bit more than it was. She told us that Mia could easily be on twice the dosage of the drug - she was on 30 mg a day, which the doctor said she usually prescribes to 5-year-olds. So we're slowly moving her dosage up to 45 mg a day, which, we hope, will be even more efficacious. The biggest problem with this is that baclofen tends to make you constipated, and Mia doesn't need any help in that regard. She has a laxative (polyethylene glycol), but if we give her the full dosage, it won't work for a week or ten days and then we have two or three days of messy bowel movements. So we give it to her sparingly, when she's having some issues with constipation. The doctor told us to cut the dosage in half so that we could give it to her all the time, and she also told us giving her a suppository every night will help, and I quote "train her sphincter." (There are phrases you never thought you would ever hear, and this is one of them.) The sphincter is a muscle, after all, and you can apparently exercise it so that it's not as tight. Who knew? I told her that was groovy, and off we went!

So then on Wednesday I went to see Mia's gastroenterologist. This was a follow-up to our visit in August, but by now, I'm kind of stressed out about feeding Mia and Krys and I have decided that it's probably best to put a g-tube in her. I think many of her problems stem from a lack of energy due to her low weight, and as we've been dealing with this pretty much since she was able to feed herself and more specifically for three years since her hip surgery, we're kind of sick of it. Her physiatrist told us that she has seen many kids with brain injuries or spinal cord injuries in the same situation as Mia - they simply don't recognize when they're hungry or thirsty, and they eat just to taste things. Once they get bored with the taste, they're done, whether their bodies need the food or not. Mia weighs only 46/47 pounds (she had climbed up to 49 about a month ago, but then she backslid) and she's 51 inches long, so her BMI isn't great. We're pretty much tired of it.

I told the gastroenterologist this, and she said okay - she's going to e-mail the surgeon who would perform the surgery and see when she can get going on Mia. Then she told me that giving her a suppository every night is probably not a good idea because it's habit-forming. Sigh. She also didn't think it was a good idea to halve her dosage of the laxative, because she's very keen on the prescribed dosage being used. She wanted us to give her a full dosage but give her half the drink in the morning and half at night. The problem is that Mia won't drink half of the drink in the morning - she doesn't have time and she simply won't do it because she doesn't want to. So I decided to follow her advice and not give her a suppository every night, but I also halved the dosage and will give Mia that in 8 fluid ounces every time she gets it from me. Frustrating? Why would you think that?

So that's where we stand right now. I'm kind of hoping she doesn't get the g-tube in until after Christmas, because we're going north on the 23rd to ride the Polar Express and we're staying overnight, and dealing with her g-tube would be annoying. I doubt if it will be that quick, anyway. Performing the surgery over the Christmas break would be ideal, but again, I have a feeling that's too soon. We'll see.

I'll write more about a feeding tube as it gets closer to the time when we're going to have it put in. Opinions are mixed among Mia's therapists and doctors about the need for it. I know, it's shocking. God forbid they agree on something!

So Norah had to get a haircut to match Mia's ...

2011-11-27T13:54:00.005-07:00

Norah's 'do was getting a bit shaggy, so she got a cut. Not quite as severe as Mia's, but her hair is thinner and, of course, she doesn't try to chew on it. I was going to post the before and after pictures anyway, but the "before" photo has something interesting:

You can't really see her hair that well, but you can see her playing with Krys's iPhone. Yes, she's discovered the addictive nature of the iPhone. I told Krys that she was leading our daughter down the dark path, but she didn't care. Norah is probably already more technologically advanced than I am - that's not hard, of course, but she is only six. Soon she'll be downloading apps into her brain directly and she'll leave humanity behind!!!!

Until then, she looks awfully cute with her new haircut, doesn't she?

Mia's new wheelchair and other news

2011-11-13T13:19:00.006-07:00

Last Thursday, Mia went to Phoenix Children's Hospital to get an X-ray of her hips. As I've mentioned, her muscles have been so tight over the past months and we don't know exactly why, so we had to check to make sure that her femoral bones weren't coming out of her pelvic bone, which would cause some discomfort, obviously. When she saw the physiatrist a few weeks ago, she thought it would be a good idea to get an X-ray, so away we went!

It turns out that there's nothing wrong with her hips. The thigh bone is right where it should be, in the pelvic socket. The doctor didn't say anything about whether she's going through a growth spurt, but I didn't push it because what can he do about that? All I cared about was whether her bones were in the right place, and they were. It's good news, but it's also annoying because we still aren't sure why her muscle tone went haywire a few months ago. I guess we're still sticking with a growth spurt. We're still working on stretching her, and she's making a little bit of progress, so that's not bad.

On Friday her wheelchair finally arrived. We got her measured two months ago, and the guy who was working on it told me that if I paid for it myself (and waited for the insurance to reimburse me), it would get here in 2-3 weeks. If I waited for the insurance, it would take two months. So I paid for it, and it still took two months. Oh well. It's here now, and life is good. Check it out:

It's a nice chair for Mia. It has lateral supports by her chest, shoulder straps, and a chest strap. As she's been leaning to her left a lot these days, this helps keep her up. She also has lightweight wheels so she can move it better, and projections on the rims are there to help her move it with her left hand (the theory is that she can reach the projections and tap them instead of actually holding onto the rim, because she can't hold onto the rim). She also has a tray, which her last chair didn't have. So it's pretty neat. She hates it - it keeps her upright, which isn't a great stretch but it's better than what she usually gets, so after she's been in it a while, she starts to get really annoyed. But that's okay - she needs to stretch, after all. We'll see how it goes at school. I imagine they'll be happy because she has to sit up, and she's been having trouble working because she wants to bend over all the time.

She's a tiny bit stretchier than she has been, so maybe the baclofen is working. We'll see. We hope that we can start stretching her more and she figures out that she can move the chair more easily than she could her other one. That would be nice, especially if it makes her more amenable to actually eating. Oh, the hopes and dreams we have!

Mia's new 'do!

2011-11-06T14:38:00.005-07:00

Mia got a haircut!

This is the shortest her hair has ever been, I think. We get her hair cut short because she tends to start putting it in her mouth as soon as she's able, plus the thickness of her hair makes it difficult to comb. This time, she's been twisting her hair with her finger a lot more (she's always done it, even as a tiny baby, but it's gotten worse as her hair got thicker), so we told the woman who cuts her hair to give her a pixie cut. If it were up to me, she would have gotten the "Sinßad O'Connor"! I don't think Krys would have enjoyed that, though.

Doesn't she look cute, though? I know, she always looks cute, but now she looks even cuter!!!!

Halloween!!!

2011-11-01T16:32:00.005-07:00

Norah dressed as Rapunzel for Halloween:

She had a fun time trick-or-treating, but she didn't go to a few houses because she was too scared. I stayed home, because Mia didn't want to go. Usually Mia only wants to go out for a little bit, but this year, with her muscle problems and the medications making her sleepy, she was almost out by six o'clock, and she really didn't want to go out. Oh well. Maybe next year! So I don't know much about Norah's sojourn around the neighborhood. I just know she enjoyed it! As usual, I doubt if she'll eat much of her candy. She likes candy but doesn't eat it excessively, and anyway, we won't let her do that. I suspect that like last year, it will hang around here for a few weeks and then Krys will take it into work, where it will vanish quickly. It's the cycle of life!

Mia's busy month

2011-10-30T12:29:00.001-07:00

A few months ago, Mia started having more trouble with her left leg. (I wrote about this already, but I'm going to summarize a bit now, because it's been a while.) She's always had issues with it, as it's the one with the greater amount of tone, but she was getting better at stretching it and walking. In August, however, she started to keep it flexed, and when she lay in her bed, she would pull both legs up to her chest and refuse to straighten them. We can still get her right leg straight, but eventually her left leg refused to straighten at all. This causes several problems, as you can imagine - getting her changed and dressed is a huge pain in the butt - but mostly, it meant she couldn't do physical therapy. Her PT had been working on her walking, but when we stood her up, she wouldn't even put her left leg on the ground. So for the past 4-6 weeks or so, he's been putting her on the floor and trying to stretch her. It's been slow going, to say the least.

We wanted to know what was going on - why did this happen rather suddenly? We visited her neurosurgeon, who didn't really give us much information. He did suggest we visit the physiatrist at Phoenix Children's Hospital. What's a physiatrist? I'm glad you asked! I mentioned back in August when I wrote about her leg that we were going to see the physiatrist. That turned out to be a lot harder than I thought it would be. The physiatrist is new to the hospital, so she wasn't contracted with insurance yet. Finally, I told the person who makes her appointments that I didn't really care about the insurance, I just wanted to see her and would pay privately if I had to. So we finally got an appointment to see her two weeks ago. Sheesh. She thought that Mia is going through a growth spurt. Kids between 9 and 12 grow quickly, and if that's happening to Mia, it's very possible that her bones are growing too fast for her muscles to keep up. The tone in her muscles has already caused the problems with her hips, which we had to get corrected through surgery, and so it's not out of the realm of possibility. The doctor was very concerned that Mia wasn't getting stretched enough. I told her I would be happy to stretch her, except for the fact that I couldn't actually straighten her leg. I asked her about giving Mia Botox, and she said she had too many muscles to target, so it might not be effective. She finally prescribed baclofen, which I had discussed with her neurosurgeon. He was reluctant to prescribe it because it works on the entire neurological system, so her normal-tone muscles would relax as well as her high-tone muscles, which we don't want. But we're trying to find a nice balance so that the higher-tone muscles relax without messing the other muscles. Mia took it for a while in 2008, but it messed with her stomach and made her sleepy. We're hoping that her bigger size and better eating this time around will help her with the side effects. That would be nice. She's working her way up to a full dose (3 pills a day), and so far, she seems to be handling it pretty well. One of the side effects is constipation, but that hasn't happened yet (considering her history with constipation, that's a good thing), and it hasn't seemed to mess with her appetite yet. Her leg seems to be a tiny bit more relaxed, but she has a while to go so far. The physiatrist said that she's worried about stretching the muscles because there's a big chance of arthritis and other complications by the time she's 15 or so, and now is the time to make sure that doesn't happen.

Meanwhile, I took Mia to the guy who made her ankle-foot orthotics in order to get her measured for a new left arm splint. The one she has is pretty good, but we need a new one (for which reason I'll get to below). He's going to fix her with one that goes up beyond her elbow and which we can set (it has gears) so she can't flex it past a certain point. If she stretches her left arm, it will let her, but if she tries to pull it back, we can stop it. This will, of course, keep her arm stretched. He's also going to make it so her hand/wrist is rotated 90 degrees relative to her arm, so that her hand is locked in that position (as if she was about to shake someone's hand, to help visualization). This is better for her than just keeping her hand and wrist in a straight line with her arm. Who knew? He had to get a prescription from her orthotic surgeon for this, but of course, it's three weeks later and he hasn't heard back from him yet. Of course.

The reason she needs a new splint is because she's getting a new wheelchair. The new splint will help keep her arm straight so she can move the left wheel of the chair. She's had a loaner chair since the beginning of the year, because the one we own doesn't let her transfer from it to a chair (it's a bit higher off the ground than a "traditional" wheelchair) and her PT at school wanted to work on that. I was waiting until she got back from Pennsylvania before ordering a new one, but in September we got her measured for a nice new one. The guy whose company was ordering it told me he could get it in 2-3 weeks if I didn't go through insurance. HA! I told him I had arranged for the money to be available because I wasn't sure if the insurance would pay for it, so that was no problem. Well, here it is, almost November, and Mia doesn't have her wheelchair yet. First, I called the insurance and asked if they would pay for it, and they said they would. I asked if I could pay for it up front and they would reimburse me, and they said they would. Well, the company who's ordering it for us took their time actually ordering it, and I'm not sure why. I think they were submitting it to the insurance, but why wouldn't they submit it AND order it, especially because I paid for half of it and said I would happily pay for the entire thing? Beats me. A few weeks ago the woman in charge of Mia's account told me they had shipped the chair. Yay! She said they shipped it on 7 October. On 20 October I called and asked if she knew how long it would take. She told me they shipped it that day, and then said they ordered it on 7 October. I didn't get too angry (it wouldn't do any good), but I know she said they shipped it, not that they ordered it. The two words don't sound anything alike, after all.

According to the woman, shipping it on 20 October meant it would get here on Monday the 24th. It didn't. I called on Tuesday and Wednesday, and finally on Wednesday afternoon the woman called me back. She said they thought it had shipped and then she saw an e-mail from the actual vendor, saying they had questions about some of the design specifications. She told her boss that I was calling and they really needed to get this done, and she claimed they had figured everything out and the vendor would actually ship it on Thursday, and they hoped it would be here on Halloween. You can bet I'll be calling on Tuesday if it hasn't arrived yet. I wasn't particularly angry about the hold-up, because I understand that things happen, but it always bugs me when people don't keep me informed - I just want to know what's going on. It's not too hard, people!

I'll write more about her wheelchair when it actually arrives, but we did get a letter from the insurance company telling us that some of the chair wouldn't be covered. They aren't going to cover the lighter wheels because they're all fancy. Now, Mia can move her chair, and we're trying to make it weigh as little as possible, hence the lighter wheels. It was just a letter, so we're still waiting to see what happens, but we find it humorous that six months ago they told us they weren't going to cover her physical therapy anymore (we've appealed that) because it wasn't "medically necessary," implying that she's too capable for PT, but when we wanted to get her a chair that she move more easily, their letter implies that she isn't able to move it by herself, so what's the point? So is she too capable or not capable enough? Insurance companies make my head hurt, and I used to work for one!

We're really hoping the medicine works, because we want her to be able to continue working with her PT. We're also hoping the wheelchair helps her become a bit more independent. She has an appointment with her orthotic surgeon in November to get an X-ray to see if her bones are growing, and she's also going back to see her gastroenterologist to check out her weight. She does seem to be gaining weight pretty well, which is very nice. We'll take it.

So that's Mia's busy month. It appears November might be just as busy. Fun!

Norah's snobby liberal education continues!

2011-10-12T08:12:00.002-07:00

Being the good liberal jerks we are, Krys and I think it would be groovy for Norah to learn artistic stuff, so we asked her if she wanted to take piano lessons this year. (Obviously, I'm joking - if she wants to be all scientific like a weirdo, we'd be happy with that, too.) She said she would, so for six weeks, she took lessons one day a week before school. The teacher told us she needs six students and she only had four in the class that just ended, so the next one is in jeopardy, but we're not going to worry about that right now. Norah seemed to enjoy it (I say seemed because Norah is odd in some ways, including not acting very enthusiastic about things she claims she really likes while she's not engaged in them - while she's doing them, she seems to love them), and I would love it if she wanted to continue. We'll see, though. What's important right now is that she gave a "recital" after six weeks, and I was there with a video camera! She played "Twinkle, Twinkle, Little Star" and "London Bridge," and naturally she rocked! Okay, maybe not, but she was only taking lessons for six weeks! You'll notice a few things in this video: One, she looks absolutely miserable. I think she was a bit scared of performing in front of people, because I did ask her if she enjoyed it, and she said yes. I hope that she understands that she can tell me she doesn't like it if she really doesn't like it - I don't think I'm that much of a tyrant! Two, she has some issues with playing with both hands at the same time. Apparently this is really hard to learn, according to the teacher. It's one of those things that, as an adult, it comes so naturally that I, at least, have forgotten if it was difficult for me when I took piano lessons. Maybe it was. It's fascinating, though, and it's one small reason why I think it would be good for Norah to take lessons - playing an instrument, like tying shoes, is about more than the actual outcome. Anyway, enjoy her performance. I do hope there will be more of them!

Norah's first first grade grades

2011-09-26T14:03:00.002-07:00

How's that for a title?

So last week we had the first parent-teacher conferences of first grade, and as we expected, everything went fine. Norah is kicking much butt in first grade, which is nice to hear. Every year we wonder if she'll adjust, and we're always happy when she does. She's working hard at school, learning to read nicely and making good progress, and working hard on arithmetic. The teacher is very happy with how she's doing.

She did get an "S" (for "satisfactory") in "citizenship" rather than an "O" (for "outstanding") because the teacher says occasionally she chats in class, but she also said it's so negligible that we shouldn't worry about it. Norah, happily enough, wasn't too bummed out because she didn't get an "O," which is nice because she often wants to have the best grades ever and if she doesn't get them, she's sad. But this time she just nodded when we asked if she could try harder to be quiet in class. We really don't have an issue with her behavior, because I can't believe she misbehaves all that much, but we'll see if next time she gets an "O."

She got close to perfect grades on every subject, and she's enthusiastic about learning everything she can. She's very excited when she understands things, and she likes telling us the answers to all the questions she herself comes up with (she writes addition problems on her chalkboard and then solves them). She's working very hard to learn how to read, and she's excited about that, too. So I'm glad she's doing well in school, because from what we see at home, she ought to be working hard at school!

We'll have to see how she does going forward. It's fun to watch her learn!

Our weekend in the north

2011-09-19T09:00:00.018-07:00

Mia's occupational therapist got married on Saturday, and we were invited. We drove north to Sedona for the wedding and stayed overnight so we wouldn't be rushed (it's two hours away, and we left the reception around 7.45, so we would have been home very late). We stayed in Cottonwood, which isn't too far from Sedona, and yesterday we spent some time at Out of Africa, the wildlife park near Cottonwood.

The wedding was at a place called Rancho Los Lagos, which is tucked away in a valley near Sedona, surrounded by the red rocks that make the area famous. It's a gorgeous place, and while the weather was a bit hot, it wasn't uncomfortable at all (and I was wearing a long-sleeved shirt, a jacket, and a tie, so if anyone was going to be uncomfortable, it was going to be to me). The ceremony was right by a small lake, with a nice cliff off to the right, and the bride and groom released a bunch of butterflies right before saying their vows (don't ask). The reception was under a tent and was also very nice. Mia and Norah were excited to see the bride (she babysits for us quite often, and they both adore her), and they both got to dance with her. Mia was flagging a bit toward the end, so we didn't stay too, too long, but they both had a very nice time.

The next day we went to the preserve. I've never been a big fan of zoos (I appreciate what they do, but I always feel bad that they need to exist), and while this is better than most zoos, it's still a zoo. Mia wasn't particularly happy to be there, but she's been having some issues with her muscle tone recently and isn't particularly happy to be doing anything (I'll get into that when we decide what to do about it). Norah had a grand time feeding the giraffe and camel from the bus that takes you around part of the park, and Mia did actually love seeing the animals (she's always liked animals). Both kids got to pet an anaconda and a lizard, and Norah tried to feed a porcupine but the danged thing kept wandering off. We saw some tigers up close, but most of the predatory animals weren't around too much. We were going to stay for the tiger show, but Mia started whining about leaving, so we left. Whenever we go anywhere with Mia, we have to be ready to leave at any moment, because she becomes annoyed very quickly. We had put sunscreen on her, but it was very sunny (it's Arizona!) and fairly hot (it's Arizona!), so I think she was just getting uncomfortable. She won't keep a hat on, though, so that's the way it is!

It was nice little weekend, getting out of the Basin and seeing some of the less horrible parts of Arizona (the Verde Valley is a nice area). Of course, as we're wildly selfish, we're just worried that Mia's OT will have less time to babysit now. Consarnit!!!!

We took pictures:

(That's Norah's hand holding the carrot)

So that was our brief vacation up in the northlands. Fun stuff! I'll try not to go three weeks between posts next time. Today we have Norah's first grading period meeting with the teacher, so I'm sure I'll have something to say about that!

(Norah, by the way, asked Krys last night while Krys was looking at something on her phone if she was "texting her BFF" and setting up a sleepover with Justin Bieber. Norah heard about all these things from her classmates, who are 6 or 7 years old. That makes me sad. The good thing was that Norah was making fun of her classmates who love Justin Bieber, so that's something. It was quite funny, though. I told Krys she needs to start a Twitter account for Norah's proclamations, because she always forgets to tell me about them. Yesterday at the hotel, after breakfast, Norah told Krys they could go to the bathroom together, "because we're both women." That Norah - quite the master of the obvious!)

Number nine, number nine ...

2011-08-30T16:49:00.002-07:00

Hey! it's Mia's ninth birthday today! How about that?

I confess, I forgot this morning that it was Mia's birthday. Usually I'm pretty good at keeping track of the date, but for some reason I forgot it was the 30th today. So I suck. It's not like she cares.

Mia at nine is, of course, a bit different than most kids at nine. Her "mental" age is far less than nine, so occasionally it's easy to forget that she is actually that old. But yes, nine years ago today she entered the world and changed our lives forever, in more ways than one. I remember the days leading up to her birth very well, because I had lost my first teaching job in June (with my wife very pregnant, mind you) and I wasn't sure I'd get another one. I had just started another a few weeks earlier (luckily) and was still getting the hang of it, and now I had to get the hang of being a dad. As I've written before, being a high school teacher is great training for being a dad, so being both at the same time was quite the experience. Mia was born on her due date, mainly because the doctor decided it was time, so while Krys didn't have a C-section, they did induce labor. She wasn't in labor all that long, which was nice for her. I still wouldn't want to go through that, I'll tell you that much.

So Mia is nine. Considering that she probably ought to be dead, we'll take it.

(This is her first day on this planet. Look how ... well, like a baby she looks!)

Various Mia news

2011-08-23T13:31:00.004-07:00

It's time for some updates about Mia. These are always fun, right?

As per usual, we're still having problems with her eating. On the first day of school she visited her gastroenterologist, who prescribed Miralax for her constipation. We've been on and off with laxatives for years, mainly because they work strangely on Mia. We'll give her the recommended dosage for a bit, and it won't work. Then, a week or even two later, she'll have several days where she poops very often, with the poop becoming more and more mushy. It's very unpleasant for everyone concerned, because as the poop becomes mushy, we don't know she's pooping (when it's harder, we can tell), so she'll sit with it for a while and it gets up in every crevice (yuck) and then she's in danger of a urinary tract infection. Plus, cleaning her up so often makes the whole area very sensitive. The doctor suggested a different dosage and less at a time, which ... worked the same way. For the past few days we've been dealing with very yucky poops, which dehydrates her and wears her out. It's SCIENCE!!!! So that sucks.

According to her teachers, she's been doing well in school, which is nice. She's not being as evil as she can be, and they're trying to keep her in the regular ed. class for some time, as she seems to enjoy the other kids. We'll see how long that lasts. I'm planning on going in one of these days and following her around (discreetly, although Mia always spots me) to see what her day is like.

The biggest issues we're having these days (well, the eating thing is the biggest issue, but that's a constant, so it blends into background noise quite often) is her stiffness. Her high muscle tone means she's always fairly stiff, but recently it's gotten worse, and we're not sure why. Her PT can't figure it out, because whenever he stretches her, it only works for a very short period of time before she reverts. It's very frustrating, because when we're trying to change her, for instance, she refuses to straighten her left leg and it makes everything a lot harder, plus it seems to bother her more. It also makes walking a lot harder, because she doesn't want to straighten her left leg to take steps. We've dealt with this for years, but over the past month or so, it's become much tighter and more difficult to stretch the muscle. In the past we've given her Botox, but the efficacy of that seems to have diminished and I've never felt too comfortable doing it, mainly because it's not a long-term solution. I wanted to talk to her neurosurgeon about it, so today I went in for an appointment. Before we did that, however, we took her to a new therapist on Sunday.

This therapist was recommended by her gastroenterologist, as the therapist's son saw the doctor some years ago and that's how they know each other. The therapist practices the Anat Baniel method (which I guess is a subset of the Feldenkrais method). I've only read a little about this kind of therapy, but it involves working with the bones and teaching the body how to move, and it's very low-key - they don't believe in splints or orthotics or anything like that. Mia went to one session and we could see a bit of a difference - I'm not ready to proclaim it a miracle cure or anything, but she was definitely a bit looser and has remained so. We're willing to try almost anything, especially something that's non-invasive, so I told the therapist we'd be back. Apparently we're somewhat lucky that there's a therapist so close to our home (she's on the west side of Phoenix, so she's about 45 minutes away) - they're few and far between, and in some of the accounts I've read, people have driven 3 or more hours to see one.

So this morning I went to see her neurosurgeon, and of course he recommended Botox. I asked him about baclofen, which she's taken before (and didn't like), but he said he only likes to prescribe that when the tone is high all over, and as her right side is fairly loose, he doesn't think it would be a great idea. He also said there's a new physiatrist at the hospital and he wants her to take a look at Mia. We'll see what she has to say. As I mentioned, I'm not really sure I want to give her Botox, mainly because I don't think it will work enough to make it worth the while.

I'm not sure how this Anat Baniel practitioner is going to fly with Mia's PT. She already has a hippotherapist who has slightly different ideas about dealing with her than her home PT, and now I've added another voice to the chorus. I do know that despite years of therapy, she's not really getting much better - she can do a lot more than she used to, of course, but she's reached a plateau as far as her walking it concerned, and I don't know what to do about it. Her PT even mentioned that this cycle of high muscle tone that seems to come around every so often might preclude her from ever walking, which is very frustrating. I don't think Mia will ever walk on her own, but I do think she's capable of walking with some assistance in the future, so anything we can do now to help that along is something we will try. We'd be stupid not to, I think.

So that's some of what's going on with Mia these days. I know - so exciting, right? I mean, my good readers probably thought they could live happy, healthy lives without ever knowing anything about Anat Baniel. This is why you read - for the KNOWLEDGE!!!!!

Back to school!

2011-08-14T13:16:00.002-07:00

Mia and Norah started school this past Wednesday, 10 August, and I'm once again a happy camper. Six hours during the day with no kids? Yeah, I'll take that. Especially because I have a lot to do over the next few months.

Norah is now in first grade (tempus fugit and all that), and she's doing fine so far. Her kindergarten class was split up a bit, so two of her best friends from last year are in a different classroom, but as they're not allowed to socialize in class it doesn't really matter. She still hangs out with them at recess and lunch, so she's happy. Her homework is a bit harder and lengthier this year, unsurprisingly, so we'll see how she does with that. Last year I volunteered to work in her class every other Monday, but this year the volunteering is either in the afternoon (right about when Mia is coming home) or on Friday morning, when I'm taking Mia to hippotherapy. So I'm not doing that this year. Oh well. We have to volunteer for other stuff around the school, so I'm certainly not shirking my duties, but I did like hanging out in the class and getting to know the kids a bit.

Mia's situation is a bit more annoying, as it always is. The school is experimenting with mainstreaming the special education kids, which is a disaster waiting to happen, if you ask me. I don't have a problem with trying to get the special ed. kids into more situations where they can interact with regular ed. kids, but I also think it's a mistake to try to get kids like Mia into regular ed. classrooms, because she's so far behind regular fourth-graders that it's just silly. Plus, her behavior, while not terrible, is not very appropriate for a large classroom. We've been fretting about this all summer, and last Tuesday, we had an IEP meeting to discuss getting her to eat at school, and her "mainstreaming" was a topic of conversation, as well. The principal had already told me that she was not a good candidate for mainstreaming, which we already knew, but on Tuesday, they said they were going to try her in the regular ed. class. We spoke to the special ed. teacher, and we told her that she could pull Mia out of the regular ed. class as soon as possible - we're under no illusions about what she can accomplish in the regular ed. class.

Part of the problem is that Mia learns quite a bit from her peers, and if she's in a regular ed. class, they're too far ahead of her for her. When she's in a self-contained special ed. class with kids who are higher-functioning than she is but not too far ahead of her, she learns from them fairly well. Now those kids are being mainstreamed, and if she goes into a self-contained class, she'll probably be one of the higher-functioning kids, and therefore have no one to model from. On the other hand, if she stays in the regular ed. class, she'll misbehave, from screeching (usually happily) in the middle of class or pinching people randomly. So it's a conundrum. And, because she won't work independently, the teacher has to spend more time with her, and in a regular ed. class, that just won't happen, and her aide will end up teaching her a lot. Her aide is a very nice lady, but she's not a teacher.

It's only been three days, so we're not sure how it's going to play out. In a few weeks I think I will have to go in and observe her for a while and see what they're doing with her. As we always tell her teachers, we know her educational paths are limited, but we also know she can learn, so we want to give her the optimal environment for that. So far she's enjoying the new school year and she's eating fairly well. We'll see how she's doing in a week or two.

Despite eating fairly well at school, she's still nowhere near the amount of calories she needs to function well. We went to the gastroenterologist on Wednesday and she weighed in at 47 pounds, which is better but not great. I fear that a g-tube is in her future, but that's a post for another day!

For now, I'm just glad they're back at school, especially Mia. She enjoys it a lot, and they have a lot more options for her in terms of activities than I do. I just hope we can figure out what to do with her!

Hanging out in San Diego!

2011-07-31T14:11:00.021-07:00

Last week (16-24 July) we went off to San Diego for a vacation. It was time for Comic-Con, which I have attended for the past few years, and I asked my parents if they would come out with us so we could have a longer vacation. Two years ago, when we went, we couldn't do anything at night because we had no babysitters, and I didn't want to go with the family again and let Krys deal with two children. For all the traveling my parents do, they hadn't spent any significant time in San Diego, so it was perfect!

Krys rented a house in Mission Beach, less than a block from the beach, which was very cool. Norah loves the beach, and so she was excited, and it was nice to have a relatively large home base. The house was three stories and made pretty good use to the very limited space in that area, and it had a nice patio where we ate our dinners. Krys and Norah spent a lot of time at the beach. My mom hung out there quite a bit as well. Mia doesn't like the beach (especially because she doesn't like the water, which is far too cold for her), so I didn't spend a lot of time there either, even though I did manage to go a few times. My dad hates the beach, so he didn't go at all. The only bad thing about the beach was the copious amounts of seaweed in the water and on the shore. What, they can't clean that up?

We didn't do too much around town, mainly because things are expensive and it's a pain to cart Mia around. We did drive up to La Jolla to see the seals on the beach, which was fun (although the weather was strangely terrible - cold and overcast). We drove out to Coronado Island and down the coast a bit, and we also drove onto Point Loma to check out the national park at its end. We also visited the USS Midway because Norah thought it would be neat (and it was). On Thursday and Saturday, the family (without me, as I went to the convention) went to Sea World, where they had a grand time. Norah got to hang out with the dolphins, which she enjoyed. I can't write very much about that because, well, I wasn't there. But I know she liked it!

All in all, it was a fun break. Norah went out a bit further into the water with me one time, but after that, she got scared really easily, and I'm not sure why, and she couldn't explain. Oh well. Mia did enjoy the one time she went to the beach, but she otherwise wanted to watch television. I took Norah to the convention on Friday for a couple of hours, and she had a fun time checking out all the nerds. It was a nice, relaxing week. And here are pictures!

From the Midway:

Here are the seals coming ashore (unfortunately, the people on the beach wanted close pictures, so they would run toward the seals, scaring them away; apparently there's a big debate in La Jolla about letting people on the beach or keeping the seals away). There's also Krys and Norah on the beach at La Jolla.

Beach photos!

Out on Point Loma.

Norah at the comic book convention.

At Sea World.

So we've been back a week, and it's been tough. Mia is eating irregularly, and we're not sure what to do about her. She'll be good one day and resolutely against eating the next. It's frustrating. But we'll figure it out!

Seven more days and it's back to school! Whoo-hoo!

Norah can't resist the slang!

2011-07-13T09:00:00.002-07:00

I was driving Norah home from school yesterday, and she said this to me:

"So Rhiannon [I think that's her name; it could be "Rhianna"] was like, 'I'll miss you when you go to the beach!' [We're going to San Diego next week] and I was like, 'I'll be back!' and she was like, 'You're going for forever!' and I was like, 'It's only for nine days!'"

Yes, with all the "likes" included. She's been doing this a lot more recently. It's partly our fault - we say "like" far too much - and it's partly from her peers and television, but it's a lot cuter when a six-year-old says it than when we say it. I just thought that summary of her conversation was, like, hilarious.

Settling back in

2011-07-05T13:50:00.003-07:00

Mia and I returned to Arizona on the 22nd of June, and we've been trying to get back into the swing of things. I've decided I'm not going to be annoyed by the heat because what's the point, but Mia really can't go outside for too long, because she does get overheated even when she's in the car and the air conditioning is going full bore. It's very odd - there's a vent right above her, but the AC simply doesn't do a very good job on her. So while I've been trying to love the heat (or at least accept it), we've been spending a lot of time indoors because I fear taking Mia even to the mall (not that she wants to go; she's perfectly happy hanging out inside and watching TV).

Her eating is pretty stable, even though she's not eating as much as I'd like her to. We're trying to do everything they did with her at the clinic, and that's moderately successful. We're also trying to keep her on a strict mealtime schedule, which means we're trying to keep away from snacks in between meals. I know some theories say people are better when they graze rather than strictly following the three mealtimes, but if we allowed Mia to do that, she wouldn't graze on fruits, vegetables, or other stuff that keeps her healthy, she'd graze on popcorn. The healthiest thing we can get her to eat for a snack is peanuts, but she can't eat those all the time. So we're making sure she sits at the table for breakfast, lunch, and dinner, and we give her a variety of stuff. She doesn't eat it all, but we're trying.

As always, her favorite foods are mac 'n' cheese, peanut butter on toast, and eggs. She'll dip the eggs in ranch dressing or ketchup, both of which she's decided she likes. I've been trying to get her to eat meat, which isn't as successful, but she is trying it, so there's that. I've been hiding some of her less accepted food in with stuff she likes (ground meat in among the eggs, for instance), which helps because once she gets it in her mouth, she's fine with it, at least if she can chew it. She's drinking very well, too, which is nice.

She missed the first part of summer school/camp, which ended last week. This week she's home, and then she'll go to camp for a week (they can only afford summer school for four weeks, which kind of sucks, but such is life). She's only going for a week because we're going to San Diego on the 16th for a vacation/my annual visit to the comic book convention. I'm kind of glad she's been home with me, because I'm able to try to get her to eat better without sending her off to people whose primary job is not to feed her. I'm hoping that by the time school starts (on 10 August), she'll have a nice routine going on, and I can trust the teachers to get food into her. That ought to be fun.

One problem she's having is that she's not getting enough exercise. That's my fault, of course, but for a few days after she got home, she was really worn out (I suspect the heat hit her hard, even if she wasn't out in it) and I haven't gotten into it too much because I'm lazy. We're trying to stretch her a bit, at least, because she seems awfully tight. Summer is always a pain in the butt with regard to getting her going, because the heat is so oppressive (even inside, the AC works but you can still tell it's 110 degrees outside) that it's hard for both of us to care. Genesis has a song called "Heathaze" which perfectly sums up the feeling of summer in Arizona. Lethargy sets in quickly each day.

Norah, meanwhile, celebrated her sixth birthday on 22 June (a Wednesday, the day we got back) and had a party at her Little Gym on the following Saturday. It's a pain for her to have a birthday in the summertime, because a lot of her friends from school couldn't come for whatever reason, vacations being perhaps the biggest reason (although I'm not sure). Still, she had a decent amount of kids there, and they had a good time. Krys got the number of one of her friends and this past weekend the girl spent two long days here, mostly in our pool. It was very fun for Norah to see her friend, because although she gets along with the kids at her summer school, she has also encountered the worst thing a girl can encounter - cliqueish girls. Yes, already. So she's had some issues with them, mostly because they won't play with her. Norah tends to be a bit shy, so she had a hard time finding a girl to play with. She has, but I know she misses the kids at her school, who haven't quite developed cliques yet. Give them time!

So that's what's going on. Not much, I know. Mia has gotten back into therapy, we're dealing with school stuff (about which I will have to post when I know more), and we're trying to make sure she doesn't backslide from how she was doing at the clinic. She has an appointment with her gastroenterologist on 10 August, at which time we'll see how she's doing (although I'm weighing her periodically to make sure she's okay). Until then, we're just working to make sure all is well with her!

Mia's out!

2011-06-15T17:07:00.005-07:00

Today Mia was discharged from the clinic. She was there for two days over 6 weeks. We're going to spend the week at my parents' house - I wanted to stay a few days in case she regresses so badly I need some help, but I couldn't get a flight out on Sunday or Monday and had to wait until Wednesday the 22nd. But that's okay - she's not in summer school because it has already started, so it's not like she has anything to do in Arizona. The only reasons I'd like to be home are because we both miss Mommy and Norah and she has some more toys at home, but she'll be fine for the week.

We're very happy with the work she did at the clinic and how well the staff worked with her. I don't have any idea if her advances will carry over as well as we're hoping, but I do hope she continues to make some progress. Of course, tonight at dinner she didn't want to eat anything - naturally - but I can chalk that up to me allowing her to have some snacks earlier in the afternoon and the fact that we ate a bit later than she's been eating and I think she was very tired. But I keep thinking that she's going to go back to being a pill. Sigh. We shall see.

Anyway, it was her last day, and she had a nice party (with brownies and macaroni and cheese, her favorite meal these days), and the staff was very nice as they said goodbye. I took a few pictures:

She never got her OT's name right. She knew several kids' names, including ones I hardly ever saw, and her speech therapist's name, but not her OT's. How sad! (Considering how awesome she was, Mia should have learned her name. Of course, it's entirely possible Mia didn't learn it because her OT made her work so hard.)

If you wanted anything done around the clinic, you spoke to this lady. She too is awesome.

Here's a nice staff photograph. Mia always smiles nicely a split second before the camera takes the picture. Clearly I need a faster camera!

Once again, I'd like to thank the entire staff at Good Shepherd (if any of them happen to be reading). I don't know how well Mia will do going forward, but she's made a lot of progress since the beginning of May, and we all hope we can keep it going as we move forward.

Norah enjoys her time in Pennsylvania

2011-06-12T11:50:00.018-07:00

Krys and Norah arrived here a week ago (well, the 3rd of June, but that's close enough) and they left this morning (after their flight last night was cancelled, but luckily we hadn't left them at the airport yet, so they just spent another night at my parents' house). They had a good time, and it was nice to see them. Krys, of course, was very happy to see Mia (more about her in a day or two), so that was keen. We had a nice picnic at my parents' house on Saturday the 4th - we brought Mia down and invited a bunch of people who either hadn't seen the rest of my family in a long time or had never met them. Mia enjoyed herself:

Krys and Norah went up to the Ithaca, New York region for a day to see Krys's sister, and then, this past Friday, we went to Hershey Park with my mom, my sister, and my sister's kids. Arizona is largely bereft of amusement parks (too hot in the summer?), so it's always a treat to visit one when we're here. The day wasn't too hot, and as many kids were still in school, it wasn't too crowded (there were plenty of school groups, but not as many people in general). So we got to ride several roller coasters, the kids got to ride a bunch of rides (unfortunately for Norah and her female cousin, they were just a tiny bit too short to ride the bigger rides, even though they wanted to), and a good time was had by all.

Here are some of the pictures from the trip:

This is Norah and her cousin on one of the kiddie rides.

My sister and her kids; Krys and Norah on the Ferris wheel.

The kids wanted to go on the giant log flume that gets you really wet, but they were too small. So they stood on the bridge across where it comes down, which has the same effect.

Trust me, Norah is in this picture. She's standing by the pillar to the right.

Mission accomplished!

Here's one of the roller coasters we rode. It was pretty danged awesome.

Here are the kids on their rides. I missed Norah's face in the first one.

They absolutely loved this ride. They rode it thrice before we almost had to drag them away from it.

Norah was disappointed she couldn't go on the big swings. She got over it when she rode the smaller swings.

Norah also had a good time with the stairs in my parents' house - we don't have stairs in Arizona, so they were quite the novelty. She also had fun with my mom's collection of dolls, some of which she had when she was a girl in the 1940s, others that my sister had when she was a kid. Norah digs dolls, of course, so she had a grand time with them.

I was hoping that Mia and I could go home with them, but Mia still has a little bit more time at the clinic. Not much, but some. But that's a post for another day!

So, what's Mia up to?

2011-05-31T12:12:00.011-07:00

I haven't been writing much about Mia because she's just been doing the same stuff, even though she's making steady progress. Last weekend we went up for a big family dinner at the clinic, so my mom took some pictures. Meanwhile, the doctor and case manager have made some noise about discharging her, which would be great news if I thought she was ready. They seem to think she's much further along than I do. They told me two weeks (which would put it at the end of next week, the 10th or so of June, while I think she might need at least another week, if not two. That would put her in the clinic for eight weeks, which is about where I thought she'd be. They told me their 2-week time frame is not etched in stone at all - they were just speculating. She's doing very well, but I'm not sure she's eating consistently enough or that she's eating enough variety. But she's making good progress, and I expect she'll definitely be home in June sometime.

Meanwhile, I think she's homesick. She's being much more aggressive than she usually is, and while it's due in part, I'm sure, to all the work she's being forced to do, I think some of it is because she wants to go home but can't express herself very well. In between Sunday (when I saw her last) and today (when I visited), she lost her computer privileges because she started destroying the keyboard. I could have told them not to leave her alone with the computer, because she will always destroy whatever can be destroyed (Russian anarchist Mikhail Bakunin once said something to the effect of "what can be destroyed should be destroyed," which Mia takes to heart - I like to think Bakunin would be proud of her), but they let her play with it without supervision, and that's what happened. She doesn't seem put out by it at all, because she always just moves on. But I think it's part of her homesickness, which is why I wish she could leave at the end of next week even though I don't think it's going to happen.

Anyway, she's doing well, and on Friday Krys and Norah are visiting for a week, so they'll be happy to see her. Maybe she'll go home soon after they leave! Wouldn't that be nice?

Pictures, pictures, pictures! We don't often get good ones of Mia smiling, so these are nice.

I like this picture because Mia is wearing her "I'm a star" sunglasses and looks very dismissive, just like a real star!

She also looks too cool for school here.

Not much of a smile, I'll grant you.

This is better even though she's not looking at the camera.

She's laughing here.

Finally, a good smile!

There you have it. I will have more information when I get it!

Norah finishes her first year of school

2011-05-26T07:20:00.003-07:00

I haven't been updating about Norah recently because, well, she's in Arizona and I'm in Pennsylvania, so it's hard to keep up. I do know that when she first got in the pool a few weeks ago, she actually said, "Shiver me timbers, that's cold!" Because she's, you know, awesome. But her first year of school ends today, and Krys told me yesterday that she picked up a bunch of awards. Yes, it's kindergarten, and in today's society, we have to give awards to everyone, but in her school, which is a bit tougher than a regular school, they seem to give standard awards and not necessarily to everyone. So that's nice.

Norah received honors for reading 25 books and 50 books, for knowing 120 Ayres (Ayers?) words, for "citizenship," for outstanding homework, something for math skills, and one for penmanship. I imagine most of the kids got the ones for reading and knowing the words, but I know not everyone got one for citizenship and penmanship. The citizenship one comes from the fact that she never got anything other than an "O" for her behavior (they can get "O" for "outstanding," "S" for satisfactory, and "N" for "needs improvement"), something not all the kids can say. According to her teacher, not many kids got an award for penmanship - the teacher could be lying, but I've seen some of the kids' penmanship and I really hope they didn't win anything! (That's mean, but some of the kids really need to work on their writing.) So while I'm proud of her hard work, I'm just as proud of her behavior and the fact that she does really try very hard no matter what she's doing in school.

Krys and Norah will be visiting Pennsylvania next week, which I'm looking forward to, and maybe I'll have some more to write about with regard to the younger daughter. Who knows. Right now, she's finishing her kick-ass first year at school. Yay, Norah!

Pictures! I have pictures!

2011-05-16T17:24:00.014-07:00

Yes, it's true. I have been taking photographs of Mia at her rehab clinic, and now I will share them with you!

Here she is in speech therapy. That's her speech therapist and her occupational therapist trying to get her to eat. That's fun! In the second one she's actually eating peanut butter and jelly. Whoo-hoo!

In one section of the clinic they have a day room. Mia and the other kids hang out in it and work with the recreational therapists. Here she is playing with one of the toys.

This gives you an idea of what the day room looks like.

This is some of her physical therapy. She's bowling. Yay, bowling!

This is a light trainer, which offers some support but not as much as a gait trainer. She's pretty good at walking in it.

Mia really digs swings. So they made it part of her therapy!

Here's my parents and me hanging out with Mia. She just wants to watch TV; she doesn't care about these people who love her!

So those are some of the pictures of Mia as she works. She's working hard and making some progress. I hope it continues!

Mia's (temporary) new home

2011-05-09T05:46:00.002-07:00

Last week, Mia and I flew to Pennsylvania so that Mia could start staying at Good Shepherd Rehabilitation where, it is hoped, she can work on her eating problems. She entered the facility on 2 May ... and hasn't been seen since!!!!!

Okay, not exactly. I drove her up to Bethlehem on Monday and got her settled in. The facility has a large day room where the kids can play with a bunch of different toys; a patio for when the day is nice; a cafeteria; and a bunch of rooms, in one of which Mia is staying (with a roommate). The kids go outside with the nurses, as well. On Tuesday I drove up and saw her on her first "official" day under her new schedule. She has speech therapy three times a day, and she gets physical and occupational therapy once a day, every day. Her schedule is pretty full, in other words. I watched a few of her therapy sessions. The speech therapist is trying to get her used to foods she doesn't necessarily like - she uses food Mia likes and moves to food she doesn't like. Yogurt, for instance, which Mia often ignores. They've been taking Cheerios (which she'll eat) and putting them in yogurt so Mia has to fish them out and lick them off. They get pretty messy - that's part of the point. Mia, of course, decided she would drink a lot of Pediasure the first day, even though we couldn't get her to drink anything before she arrived there. I told them it was probably the novelty of it all and she probably wouldn't keep that up, although I would love it if she does. The speech therapist is just trying to get her used to all the various food before they start pushing her to eat. Mia was having a good time with it even though she still wasn't eating a lot, so I guess that's something!

I also checked out a PT session. As they work with Mia every day, they're going to try to get her to use her left hand a little more. They want her to be able to brace herself on her left hand so she can use her right hand more, because right now if she's using her right hand and she starts to lose her balance, she stops doing anything with her right hand and braces herself with it. So they want to get her to use her left hand a bit more, if only for stability. They also want to work on her transitions from her wheelchair to a different chair or her bed, because I can't carry her all the time! Her PTs are excited about this, and I'm certainly hopeful that they can make some progress with it.

I went back on Thursday to meet with the doctor and her case manager. Every Thursday the therapists and doctors have a meeting about the patients' progress and what they're going to work on in the next week. Then they meet with the parents. The meeting about Mia wasn't all that exciting because she had just arrived and I already knew most of it, but it's still good to hear their plans. Finally, my mother and I went up on Sunday (yesterday) for a Mother's Day tea. That was fun.

I wasn't sure how often I was going to go up and see her, but after the first week, I think I'm going to leave her alone most of the time. The instant she sees me, she starts chanting that she wants to go home and watch TV. The nurses thought that was sad because she wanted to go home, but I had to tell them that for Mia, "home" only means a place where she can watch television - she can watch TV in her room at the clinic, and that makes her happy. I asked the therapists if she was demanding television when I wasn't there, and they said she was fine. So I'm more of a distraction than anything. She doesn't have a lot of free time anyway, and I'd rather she spend it in the day room playing with the recreational therapists (yes, they have recreational therapists, whose job is to play with the kids) than watching TV. Mia's perfectly happy when I'm not there, after all, so while I'm still going to visit her, I'm going to limit my appearances at the place.

The clinic has a nice group of kids, and Mia seems to enjoy it. They have some babies, but they also have a 5-year-old, a 7-year-old, an 8-year-old, an 11-year-old, and a 12-year-old, all with varying degrees of physical and mental disabilities. Some kids are there simply to recover physically from accidents, while others are there for reasons similar to Mia. The kids seem to like Mia, even though Mia tends to ignore them. But she likes saying hello to everyone, and when I'm there and I can watch her without her seeing me, she seems to be enjoying herself.

She's been in the clinic for a week now, and I do hope we can see some progress soon. That's not too much to ask, is it? I will continue to update her work as she moves on, and it would be nice to report good news.

Eight ought to be enough

2011-04-18T17:02:00.015-07:00

Yes, 18 April has come around again, and while you might think I'd like to forget about this date (and I would), I also think it's important to acknowledge that, yes, on this day in 2003, the lives of everyone in the Burgas family (including the unborn Norah) changed forever, because that was the day I was rear-ended by a truck and my lovely daughter sustained her traumatic brain injury. The entire story is here, if you don't know it yet. As always, I like to write about any progress she's made this year, plus I have a big announcement, so I guess I'll write about that, too.

This past year Mia finally recovered pretty much fully from her hip surgery, which she had in January 2009. The year following it was pretty bad, as she struggled to recover and lost any inclination to eat (which of course continues to this day, as regular readers know), but this past year she's finally reached a point where her hips didn't hurt and the bones are where they're supposed to be. Her physical therapist has been very happy with her progress, too. After she was "fully recovered," she still didn't want to walk a lot, but he perservered (as he does), and in the past few months, she's gotten much better at getting around. He used to have to kneel behind her and hold onto her hips while she moved her feet, but in the past few months, he's been able to stop doing that and now he and I stand on either side of her, holding her arms, and she can move her feet by herself. She's still working on that - she tends to list a lot, veer to the left, and she doesn't lift her left leg as high off the ground as she needs to - but it's still a big step (so to speak) along the way. We're hoping that she keeps working at this, gains more strength, and learns more balance. Her balance is still a big problem, so until we get that figured out, she's not going to be doing a lot of walking on her own. But at least she's figured out that moving her feet is a good thing!

Meanwhile, she's learning a lot. This year in school has been a good one for her education (and not so good in other ways, but I'll get to that). We're not sure why - she's not as uncomfortable from the hip surgery, I know, which has hampered her the past two years in school, and I think because she's able to move more, she's more curious about the world. It could also just be that she's learning more so she's able to interact more with the people around her, which makes her want to learn more - I'm not positive her brain works like that, recognizing cause and effect, but it also might be a more unconscious thing (it's very hard, in case you haven't figured out, to grasp exactly what her brain is doing inside that noggin of hers). Either way, she's doing much better at school. She's using the computer to spell words (which she enjoys) and she's moving beyond simple consonant-vowel-consonant words into a bit more difficult words ("of," for instance, which doesn't look difficult until you realize that the "f" doesn't make an typical "f" sound). She's reading a bit more, as she's able to sound things out better. She's also using a lot more sentences, not only complete ones but ones that are correct in context. We've also been hearing a lot more sentences that are new instead of ones she's memorized by rote use. One of her favorite sentences involves telling people how much she likes their shirt or earrings or necklace or buttons - yes, it's a rote usage, but it's still very cute. Her vocabulary and understanding is increasing, too, which is nice. Her teachers are still having lots of trouble with her fine motor control - she's still signing her name really big, for instance, because she can't get control over her hand to keep it small - but it's something to work on for the future. For the most part, her schooling is going very well, even though she keeps getting new teachers each year who have to learn all about her skill levels and behavioral quirks (she still pinches too much, for instance). Next year she's getting yet another new teacher, as the school separates the special ed. kids into grades 1-3 and 4-6, and she's moving up to fourth grade. So the learning process begins anew!

The biggest issue over the past year has been her weight, which has been a pain since her surgery. We thought that once her hips were fully healed she would start eating again, but she didn't. We took her to a gastro-enterologist and a child psychologist, and we started giving her a high-calorie drink, and by the end of 2010, she had gotten up to 47 pounds (at 48 inches long). She kept growing (in early March she was 50 inches), but for some reason she stopped drinking the high-calorie drink. Now, it doesn't taste good, that's for sure. But we tried putting chocolate syrup in it and we tried giving her different high-calorie stuff, and nothing worked. So she started dropping weight again. In early March she was down to slightly less than 44 pounds. We explored the possibility of a g-tube, which would deposit liquids directly into her stomach, but we're wary about more surgery and we're also convinced this is a psychological problem. I've always thought that Mia doesn't or does eat based on the fact that it's almost the only thing in her life she can control, so if we want her to eat, she gains some measure of power by not eating. She doesn't understand the consequences of not eating, so that has no effect on her. As she lost weight, we tried various motivational techniques (not letting her watch television, not letting her read with Mommy), but nothing worked. I've mentioned this before, but Mia is extremely stubborn and extremely patient. She simply doesn't care if you sit her in front of the television and tell her she can't watch until she drinks her milk. She'll sit there for hours, telling you every so often that she wants to watch but not drinking and not getting too bent out of shape that you're not turning the television on. It's annoying, as you might expect.

So we began to think about other options. One thing we decided to try was sending her to an inpatient clinic, where they could concentrate on her for long stretches of time and come up with strategies we might not have considered. While we were researching that, I started giving her the high-calorie milk through a syringe, and she was fine with that (I joked that she was a Roman emperor in a past life, because she's perfectly happy to eat as long as someone else puts the food in her mouth). So for a month or so her teachers and I have been giving her the drink that way, and it's really starting to bother her teachers, I know. She behaves far worse for them than she does for me, and I know I'm frustrated about it, so I can imagine what they're going through. We found a few clinics, and finally decided to try one out: Good Shepherd Rehabilition in Bethlehem, PA. Part of the reason we picked it was because, all things being equal (we didn't see too many differences between the ones around the country that we could find), it's pretty close to where my parents live. I'm going to go with her and stay in Pennsylvania, so the fact that I could live in my parents' house was a nice bonus. Krys happened to be in Pennsylvania a few weeks ago, and she went by the clinic. She said it was very new, very nice, and didn't have a lot of kids but had a lot of nurses, which means Mia won't get lost in the crowd. She has PT and OT every day and speech therapy (by which I assume they mean feeding therapy, although I imagine speech will be part of it) three times a day. The nurse told Krys it's a minimum of four weeks for the program, and I assume Mia will be there more like 6-8 weeks. But we'll see.

So we're flying out on the 30th and she'll go into the clinic on Monday 2 May. She's going to miss the last month of school, but I'd rather she miss the last month than the first month, and as we're going to San Diego in late July she'd have to go now or after that, and I really didn't want to wait. Her teacher has provided the clinic with a basic curriculum, because they have a teacher from the local school district who comes in and works with the kids, so I hope Mia won't fall too far behind in her work. I'm going to stay in the area - I know they're going to want to train me in whatever strategies they discover work, and I imagine there will be other things I can do. Krys and Norah are going to come for a week or so in early June, so at least they won't go too long without seeing Mia (and me, of course, but who cares about me, really?). We really hope this works, because the next step is a g-tube, and no one wants that.

So that's Mia's year plus our big announcement. She really has made a lot of progress this past year, which is why the past three months and the return of her eating issues is so frustrating. She remains a wonderfully happy child, and it's so nice that she's getting more and more able to interact with the people around her. The challenges never go away, of course, and just when we conquer one of them, a new one or two seems to rise up, but Mia usually makes it worth it. I mean, I can live without the pinching, but I love when she talks to us or when she manages to walk across the floor or when she plays with Norah (as rare as that is). As always, I appreciate everyone for reading, and I hope this next year is even better because she finally learns that she really ought to eat more. Wouldn't that be nice?

In case you're dying to read the other yearly recaps, here they are: 2005, 2006, 2007, 2008, 2009, and 2010. We just keep trucking along!

More art from Norah!

2011-04-16T17:08:00.007-07:00

So in Norah's art class, they drew a sequence showing a humorous situation. Yes, she's already drawing comic books and she's only five. Here's her take on the template (yes, they have templates for the kids, but they don't trace - they have to look at it and draw it freehand):

Bird sees a worm:

Bird pulls the worm:

Worm snaps like a rubber band, with much physiological and psychological damage all around!

She had to color the second two at home, which is why they don't look quite as polished as the first one. Still, that's pretty keen. At least I think it is! All hail the great artist!

Norah lost a tooth!

2011-04-10T09:12:00.005-07:00

Yes, she's five years and ten months, and she lost her first tooth. I have no idea if that's "normal" or not; several kids in her class have already lost more than one tooth, but a lot of kids in her class are older than she is. Mia lost a few teeth at four, I think (it's tough to recall every tiny detail), but it's been years since she lost one and only has maybe four or five adult teeth in her mouth. Norah's cousin is eleven months older than she is and she just lost her first tooth. It's a crapshoot!

Norah was very excited about it. The tooth was loose for a while and we kept telling her to leave it alone, which of course she could not do (kids aren't the only ones with this problem, as you well know). She lost it at school, and I wonder if some of her friends didn't tell her to pull it out, because I know some of them did that. Either way, the sucker would have come out soon enough. She has another loose tooth (yes, they're the two lower front teeth - incisors? - that stereotypical kids always have missing in classic, Rockwellian photographs) and she's keen on losing that, too. I'm glad it hasn't come out yet, because I'm not a big fan of giving kids money or prizes from the "tooth fairy" when they lose teeth. As Krys is away this week (long story), I didn't want to have to deal with it. She's flying back today, so she can decide what to give Norah! I'm not even going to tell you what she gave Norah for the first tooth, because it makes me angry,

So here are some pictures of Norah without the tooth. Yes, I'm a cliché. No, I don't care. You can't see it in the first picture; I just thought it was cute.

So that's the first tooth. I wonder how long it will take for them all to come out?

Hey! Norah's doing stuff!

2011-03-29T13:59:00.003-07:00

Yes, the joys of parenting: Trumpeting to the world whenever your spawn accomplishes something that we all take for granted. That's what it's all about! It is actually impressive to watch someone learn something, because so many connections have to be made in the brain for it to work, so even if we might take it for granted, remember - we were once that little kid. "Sunrise, sunset, swiftly flow the --" You get the picture!

So Norah recently learned how to tie her shoes. It was actually something for which they received a certificate at school, even though they didn't actually learn it in school. I hear a lot these days about how kids don't need to learn how to tie their shoes because of the magic of velcro, but the point is not tying shoes, but learning complex movements and being dextrous. When I hear people say there's no point in learning how to tie shoes, I want to punch those people right in the brain. But I perservere in my non-violence!!!!

Of course, Norah ties her shoes "wrong." That is, she makes two loops with the laces and then ties those together. If you're unclear what I mean, I have video (you knew there had to be video, right?):

This is a bit easier than the "right" way, but, oddly enough, harder to untie, especially if she double-knots them. Either way, she doesn't wear tie shoes all that often, but I'm certainly glad she learned how to do it. When she's a bit more confident I will try to get her to do it the "right" way. Because that's how we did it when I was a kid, dadgumit!

She's working on reading, as well, and although she's doing okay, I don't have video yet. Soon enough we will give her a book cold and she'll be able to get through it. Then, the camera and the pressure will be on! Will she fold like a cheap lawn chair? Only the future knows!

Trying to keep up ...

2011-03-15T12:54:00.003-07:00

I hate not posting more often, I really do. But I suck. Anyway, it's Spring Break, so I'm dealing with two children, one of whom, as you know, doesn't want to gain any weight, which is a bit stressful. However, I thought something that happened this morning was funny. Norah was drawing something while still in her pajamas, and it was getting on to 11 o'clock. I joked to Mia that Norah never wanted to get dressed, and Norah, indignant, said:

"I'm not sillying off here! I'm drawing!"

"Sillying off"? I LOVE it! Norah isn't sillying off, man, she's seriousing around! She finished her drawing, then got dressed. She has things to do, people!

Yes, I'm back with more of Mia's weight problems, unfortunately

2011-03-11T16:35:00.002-07:00

I have a nice post to write about Norah and her accomplishments, but I need to film her doing stuff, so that will have to wait a bit. In the meantime, Mia is still having weight issues, but now they're even worse. Good times!

I mentioned last time that she weighed 47.7 pounds fully clothed, which meant she had lost some weight from January, when she weighed 47.2 pounds with only a hospital gown on. Well, last week I got her weighed with her clothes on ... and she weighed 45.8 pounds. Yeah, that wasn't good. I told the nurse to put us on a waiting list for the doctor in case she had a cancellation, because the first appointment I could get with her wad 14 April, and I certainly didn't want to wait that long. Yesterday they called me and said she had an opening, so I hustled on over.

This time they took all her clothes off ... and she weighed 43.8 pounds (plus she grew two inches, so she's up to 50 now). So since January she's lost 3.6 pounds, which is really, really terrible. She's getting worse, too - we can barely get her to drink one Kid Essentials a day, which is only 350 calories, and often she doesn't even drink all of that. The people at school are having the same problems. Mia has entrenched, and nothing at all gets her to drink. The doctor was just as concerned as we were, and we both agreed it was probably time to stick a g-tube in her ... a "gastric feeding tube," for the laymen. Yay!

A g-tube means surgery - she needs to go in, the surgeon makes an incision into her stomach, and they place a valve on her skin through which we feed the tube into her stomach. The valve looks like the thing on a kiddie pool toy, with a plastic cap that snaps into place over the aperture. She doesn't need the tube in all the time, just when we want to get fluids into her. Her doctor is very worried about her weight loss, so I made an appointment with a pediatric surgeon ... but it's not until 23 March, so I have to wait a week-and-a-half to set up the surgery, which I hope can be done soon after that initial consultation.

The biggest fear I've had about a g-tube is that Mia will become dependent on it and give up eating solid foods altogether. That's still a concern, but I'd rather she not starve herself to death, so it's kind of gone by the boards for now. We can send her to school and they can feed her normally, and when she gets home we can try to get as much in as possible. If that doesn't work (as it hasn't been for over a month), we can hook her up before she goes to bed and pump some calories into her. My concern is that she'll bother it a lot, and she could conceivable rip it out, although it would hurt like hell. Given Mia's obstinacy, I wouldn't put it past her. I'm sure she'll get used to it, but until she does, we'll have to be careful.

Krys is worried because it's surgery (the procedure takes 5-10 minutes, but she'll still be anesthetized, which is always a bit scary), but we are pretty much out of options. Her speech therapist tells us that there are aggressive inpatient behavioral therapies that we can try, but none are in this area, so she and I would have to go to another part of the country for a month or two while Mia lives in a clinic and I go insane from boredom. Plus, who knows if it would work or if we'd be able to continue it after she got out. Plus, who knows how long it takes to get into one of those places, and we don't have a lot of time. Maybe we'll try it later in her life if she's still having problems, but right now, her more pressing need is nutrition, stat!

So I'm sure in two or three weeks she'll have more surgery and yet another thing implanted in her body. She already claims she doesn't want to go to the hospital, to which I reply, "Well, you've had every opportunity to avoid it." Naturally, this fazes her not one bit.

Next week is Spring Break, so I can work on her a lot, but I doubt if it will do much to help the problem. I just hope I can keep her from losing more weight in the next 10 days or so before we see the doctor. it's the challenge!

Boy, I wish I had good news. Norah's doing well! How's that?

More weighty issues

2011-02-21T12:13:00.002-07:00

So, Mia's weight. Yes, it's once again a topic of discussion around our house. Back in September, Mia weighed 40 pounds and was about 48 inches. In January, thanks to her physical recovery, mirtazapine, and some different techniques, she weighed 47 pounds and was still about 48 inches. Her gastroenterologist was happy, as she was finally on the curve of body mass index, having been far below it for some time. All was well!

But, as we have learned by now, nothing with Mia is easy. She has been drinking Kid Essentials for a while now, because it's packed with fiber and has 355 calories per small box. She has never had a problem with it, but about the time she got weighed at the beginning of January, she started slacking off in her drinking. Very quickly she stopped drinking it at all, preferring no-calorie water as her beverage of choice. Good move, Mia! She's eating a bit more than she used to, but that's still not a lot and doesn't make up the calories she loses from the 3-4 boxes of Kid Essentials she was drinking. So that's a problem.

A few weeks ago I got her weighed again (the doctor likes her to get checked regularly). In January she weighed 47.2 pounds with no clothes on (well, a hospital robe, but nothing else). In February she weighed 47.7 pounds fully clothed, which means she has lost a little bit of weight. We've been trying other caloric drinks, which work with varying degrees of success. We think she just sick of the taste of Kid Essentials, which is fine, but she needs to drink something else to pick up the slack. So far, we haven't found it.

Today we went to the child psychologist who prescribed the mirtazapine, and she said that going to a behavorial specialist wouldn't really work, because we're doing all the things those specialist already do. Mia doesn't really respond to motivation, because she's so stubborn that anything we either withhold or promise means very little to her. It's frustrating. But we're working at it!

I'm going to take her to the doctor's office in a few weeks to get her weighed again. If she's okay, she doesn't need to see the doctor until April, but if she's lost more weight, I suppose we'll have to go to the doctor a bit earlier. It's annoying because she's doing very well in other aspects of her life - she's working very well in physical therapy, she's speaking a lot more, she's doing pretty well in school - and I know that getting healthier with regard to her weight has a lot to do with it, because she's not weak all the time. So we'll keep working. It's always something new and fun with Mia!

Norah's brain

2011-02-08T11:41:00.002-07:00

No, this isn't a post about Mia's brain, which remains in its present state. It isn't a post about something happening to Norah's brain, which would probably kill me, frankly. It's about what Norah said about her brain this morning.

As we were driving to Mia's school, Norah said she needed to ask me a question. She may have said that twice but I didn't hear her the first time. I make that point because I didn't answer her right away. From the first time she spoke to when I actually answered was maybe 20 seconds - she said something, I said I couldn't hear her and turned the music off, she said she had a question and I asked her what it was. So, about 20 seconds.

Then she couldn't remember the question. She said, very seriously:

"My brain is too fast. I have to come back to the question."

She never did come back to the question. She tried one more time but her brain was too fast again, and then she gave up. Such is life.

I point this out just because I found it fascinating that a 5-year-old, a child of the 21st century, would so succinctly sum up what many people think is happening to our young people as the world gets faster and faster. Is Norah's brain moving so fast that she can't grab hold of any information but must move past it so quickly that if the person to whom she's speaking is a bit slow (like her father), she can't retrieve it? It's a conundrum, say I!

Or she could just be a bit goofy. But still - her brain is too fast!!!!

Yay, videos!

2011-02-02T09:42:00.002-07:00

Yes, I'm finally getting around to posting holiday videos. I mean, it's only February, right?

First of all, a tale. Krys overheard Norah telling her dolls the story of the Big Bad Wolf and the Three Little Pigs the other day. Norah was being the wolf, and she said, according to the lovely wife, "I don't like pigs, and I don't like houses." So there you have it! Norah, cutting to the core of what that story is all about!

So the first video is Norah singing with her kindergarten class at their Christmas concert. Yes, I should say "Holiday concert," but let's be honest with each other, shall we? I know at this age it's all about how cute they are, and of course, Norah excels in that department!

The next two are of her dancing at Little Gym. I always post these videos, but they're still fun. I should do a compilation of every dance recital she's done, but I don't think I'm that technically proficient.

Finally, let's check out the latest effort of Mia walking. While this is pretty good, she's gotten much better in January. She's past the point where she was two years ago, right before her hip surgery. Now we just have to make sure she keeps improving!

So those are some recent videos of the kids. I know I should have more of Mia, but Norah does do more stuff, so there's that. I also have some things about Mia that I should probably post, so that should be up soon! Enjoy looking at someone else's kids!

More Norah quotes!

2011-01-12T10:08:00.002-07:00

The other night Norah was playing with her "injas." She has two small plastic ninjas she got from the toy basket when she passed a swimming level a while back, and occasionally she takes them out and plays with them. (I assume they're plastic; toys are often made from a material that could be a space-age polymer, for all I know.) At one point, one inja said to another that "We may have to take the scroll by force." That's exactly what she said. I have no idea what scroll they were trying to get or why they needed to take it by force, but that's all I could hear clearly before she ran off to play in a different part of the house. A few minutes later she told us that she was playing with her "injas."

Then, the other morning, she went into our bathroom and started dancing, telling Krys she was "shaking [her] booty." She enjoys shaking her booty, I must say. Krys asked her why she was shaking her booty, and she said, "Because it freaks people out." I'm not sure how it freaks people out and I very much doubt that it does, but it was pretty funny that she thinks so.

So, to recap: Norah enjoys playing with "injas," who need to use force to secure a scroll, and she enjoys freaking people out with her apparently hypnotic dancing. Who knew?

Norah engages in typical holiday-type activities!

2011-01-04T17:02:00.008-07:00

At the end of the calendar year, we get a couple of different things with re: Norah. First, she has a little dance recital for Little Gym. Second, she sings with her kindergarten class. I should have video footage of these two events up soon enough, but it takes forEVER to upload video footage, so I figured I'd post some pictures in the interim. She danced well, as she's been dancing for a while so she's gotten pretty good at it and isn't terribly shy anymore. Her class sang two songs: a pro-school version of "Jingle Bells" and something about getting a rhinoceros for Christmas, which was pretty danged funny. A good time was had by all!

Both events work better with motion and sound. It's coming, I promise!

Mia rides a bike!

2011-01-02T12:30:00.004-07:00

Last year, we bought Mia a bicycle. Unfortunately, she was still recovering from hip surgery, so it wasn't really feasible for her to ride it. This year, however, she's been able to ride it a bit, and while we haven't been putting her on it as much as we'd like, she's been out on it a little bit, and it seems to help her get her legs moving. The pedals move when you pull it along, so she has no choice but to move her legs (as her feet are strapped to the pedals). She actually seems to enjoy it, although she doesn't like to go on it for very long. I thought I'd post some pictures of her!

In case anyone is still reading, I have a bunch of Christmas pictures to post, so this week ought to be busy. My parents have come and gone, the kids are going back to school, so I have no distractions!

My career as an agitator parent begins weakly!

2010-12-16T07:32:00.002-07:00

I've always wanted to be one of those parents. You know, the kind the school board hates to see. The kind that yells a lot if they want to ban books in the library, or if they want to cut programs because they're out of money, or if they don't do enough to stop bullying. I always thought that would be fun. Well, this week I got my chance, but it wasn't all that dramatic.

Apparently the Arizona Legislature, taking a break from driving us deeper into debt and not raising taxes, passed a law requiring school boards across the state to hold a public meeting to decide whether or not recess should be structured rather than free play. They didn't require that it be implemented, just that boards hold a public meeting. I fear this is some kind of ploy to get rid of P.E., but that's a battle for the future. The idea of structured recess is so idiotic that I figured the response would be huge, and it was. Parents could respond on-line, but I actually went to the board meeting. Before the floor was even opened to comments, the superintendant said that the law simply required a meeting and that the board had absolutely no intention of changing how the kids played at recess. He also mentioned that they received 550 e-mails about the issue and 540 of them were for keeping recess anarchic. Yay, sane parents! So I was not only on the "correct" side (as I see it), but I was in the huge majority as well. There was little for me to agitate about!

Still, I felt pretty good. I went to the board meeting and was prepared to rant if dumb people wanted to force kids into planned activities during recess. Kids have enough planned activities during their days. Let the wildness during recess continue!!!!

Norah has no issues with boys, I guess

2010-12-01T08:34:00.002-07:00

Yesterday Norah accidentally got a Transformer in her Happy Meal (Krys told them it was for a girl, meaning she would get Hello Kitty, but they gave her a Transformer). She doesn't care; she'll play with giant robots as much as she'll play with dolls. This morning she took it with her when we drove Mia to school, and it and the bendy rabbit we have in the car were making an action movie, based on all the shooting. Anyway, I asked her if she liked her Transformer, and she said, "Yeah, if I see boys, I don't mind them, and I'll play with them." Possession of a giant robot gives you entry into the boys' club, apparently. And Norah, being so magnanimous, will deign to play with boys because, you know, she doesn't mind them.

Illness stalks the household!

2010-11-22T12:18:00.002-07:00

Both Krys and I had fevers over the weekend (mine was probably because I had to go into the dentist last week to get a root canal started - yay! - and I forgot to take antibiotics), but what was really awful was Norah's health. On Thursday night she started feeling sick in the stomach, and while she managed to get to sleep, she woke up early on Friday needing to poop, and then she threw up a bit. Krys took her to an urgent care place because her doctor wasn't open yet, and it turned out she has a kidney infection. Nasty! She had complained about it hurting when she peed, but not very often, so whenever she said so, we told her that if it happened again she needed to tell us about it. But then she wouldn't tell us (if it hurt, which it might not have), and time would pass. So she must have had a urinary tract infection but we just didn't know it, and it migrated up into her kidneys. No fun. She got medicine and she seems to have rebounded quite well, but we keep telling her that she has to let us know if it hurts when she pees and she has to wipe herself better. But it was an unpleasant day on Friday and even into Saturday a bit. Mia, who is generally as healthy as a horse (with, you know, one small exception), survived the weekend hale and hearty. She rocks!

Sicknesses stink. Go away, diseases!!!!

What's a Commie, Godless, America-Hater like me to do?

2010-11-18T13:16:00.002-07:00

The other day Norah started singing a song. She was making up some lyrics, not singing lyrics at other parts, but when she got to the chorus, she was very clear:

"And I'm proud to be an American, where at least I know I'm free."

Yes, the Lee Greenwood song. Now, it's not a particularly egregious song, is "God Bless the USA." I mean, it's been co-opted by the nutty right, but lyrically, there's nothing wrong with the song. I just know it from the accretions of right-wing wackiness that have attached themselves to it, so I was taken aback by Norah singing it. She said she learned it in music class. I'm not terribly happy about it, as I wish they would sing other, less polarizing patriotic songs (even "God Bless America" would be better), but whatever. I just found it surprising that she learned it in music class.

Of course, yesterday she came home and started singing something that makes me yearn for the days of Lee Greenwood:

"Who let the dogs out? Who, who, who?"

Really, Norah's school? She lated amended it to "Who let the tigers out?", which makes me think they were learning to identify animals using the song and whoever taught it to her used it because it was catchy, but still. She wouldn't tell me where she learned, claiming she has always known it. Yeah, I'll bet.

So, if you're a good atheistic communist who wants the United States to crumble into ash (like all liberals MUST be, right?), which is worse: the Lee Greenwood song or the Baha Men song. Man, what a crappy choice.

Weight check!

2010-11-15T11:12:00.002-07:00

Mia got weighed on Thursday, about a month after she got weighed the last time. Once again, she gained two pounds in a month, so she's now up to 45 pounds. No, it's still not great. But she is gaining weight steadily, so that's something! I have to take her to the gastroenterologist in December for a follow-up check-up, so we'll see how she's doing at that time. Considering that two months ago she was not even 41 pounds, we'll take a gain of four pounds over two months!

Is it time for Norah to get her own apartment?

2010-11-08T16:35:00.002-07:00

On Friday Norah got out of school early. She was released at 1.25, and I calculated that she would get to the bus stop around 1.50, as it seems to take that long for her usually to get home. So about 1.45 I went to the door ... and there she stood. She had gotten off the bus by herself and walked home. I was a bit taken aback. I figured she probably could walk home by herself, but I was surprised she had taken the initiative like that. First of all, the bus driver shouldn't let her off the bus if I'm not there - the kindergarten and first-grade kids aren't allowed. So technically is was illegal for her to get off the bus. I'm not that bothered by the fact that he let her off the bus, because it would have been annoying to wait until she came back around, but usually, when I pick her up, there's another kindergarten kid who gets off as well. His mother is late usually 2-3 times a week, but I always hang around to make sure he doesn't wander off, plus some of the older kids usually do so as well. I asked Norah if the other kids stayed around, but she said no. Of course, she hasn't quite grasped the concepts of truth-telling and lying yet, so who knows if the kids were there or not. I don't know if the mother of the other kid was there, either. If she was, I wish she had returned the favor and waited with Norah. Maybe Norah just took off!

I hate when she gets released from school early, because I really don't know how long it takes for her to get home. At least now I know I have to leave a bit earlier! But I thought it was pretty cool that she walked home all by herself, even if she did have to cross our street to do so (and it doesn't have a lot of traffic at all, so it's probably fairly safe). She's getting bolder every day!

Halloween with the kids!

2010-11-01T17:08:00.011-07:00

Yes, we have pictures. Norah has inherited Krys's absolute love of Halloween (or perhaps Krys has forced her love of Halloween on Norah!), so of course we went out trick-or-treating. Mia isn't as jazzed about it as Norah is, so after a while, she was clamoring to go home. I told her if we went home she was going to bed, and eventually she decided that was better than getting pushed around the neighborhood. Norah and Krys stayed out a little longer and had some fun. I went home and put Mia to bed. She was happy.

It's always difficult putting a costume on Mia, because of her wheelchair - it never really looks great, especially because Krys always gets her a dress of some sort. This year she was Ariel. I hope that next year she gets her a costume that has pants. Even though she's a girl. Norah, meanwhile, was Rosetta the fairy, a friend of Tinker Bell's from the Tinker Bell movies. I don't know why she picked Rosetta. Who knows what strange things are going on in that five-year-old brain!!!!!

So here are the pictures of Mia and Norah:

I also forgot to post the pictures of the girls from their photo session in August, which we try to do every year (we skipped last year, unfortunately). Mia didn't smile as much as we liked, but here they are:

Look at those cuties! I hope everyone who cares to celebrate Halloween had a good one! We, of course, are mean and barely let the kids eat any of their candy - Mia doesn't want it, and we dole it out extremely carefully to Norah. She doesn't really love a lot of candy, though, which is handy. I'm sure someday she'll whine for it, but that won't be this year!

Good medical news about Mia? Uncanny!

2010-10-18T16:34:00.002-07:00

Yes, it's true - we have some good news about Mia in the medical field, which doesn't happen that often. Huzzah!

Last Monday we all went to see a child psychologist (Krys had off from work as it was a bank holiday). After she talked to us both with and without Mia, she decided that we could try a few strategies, none of which were all that novel, to get her to eat more. The one we thought would work is giving Mia a set time limit (20-30 minutes) to finish a box of the high-calorie drink we give her. She can easily finish one in that time (the box is the size of your typical juice box), and if we give her one in the morning, one in the early afternoon, and one in the late afternoon/evening (plus whatever she eats in the interim), she'll get a good amount of calories. The doctor said that's a sound strategy, and we may or may not try it. Right now, we're concentrating on our other strategy, which is making sure she has access to food pretty much all the time. This is most important at school, where they finally hired another aide, so the aide they hired to help Mia can do it all the time. They also got a small table to keep next to her, so that she always has food right there. Her aide says it's helping a bit, but we'll keep an eye on her, because if it doesn't work, we'll start with the time limit.

The doctor also prescribed some medication for her. The first one she said we should try is mirtazapine (Remeron), an anti-depressant. It stimulates the appetite, as well. We've been giving it to her for a week, and it seems to have helped quite well. It also makes her drowsy, which is kind of annoying. It wasn't too bad last week, because it was Fall Break and so she didn't have to get up for school, but it was a pain this morning getting her up. Her speech therapist was on Remeron several years ago and she says the drowsiness doesn't last, which would be nice. The doctor said the next med she would try is Zoloft and then, as a last resort, an anti-psychotic they use for anorexia, but I don't think she'll need those. She seems to have gotten a bigger appetite already (and the doctor said it should work right away, so we don't think it's just an anomaly). Today at school she drank two complete boxes of the high-calorie milk, which is superb, so let's hope that continues.

On Wednesday last week we took her into the gastroenterologist's office to weigh her, as it had been about a month since she had seen the doctor and the doctor wanted a weight check. She was 43 pounds, meaning she's gained a little over two pounds in about five weeks. The doctor was perfectly satisfied with that gain, so she's going back in a month for another weigh-in. No, 43 pounds isn't great (as Friend of the Blog Roger points out, his daughter is two inches taller than Mia and outweighs her by almost 30 pounds), but it's progress. Norah, by the way, is 45 inches tall (three inches shorter than Mia), 40 pounds, and almost three years younger than her sister. So Mia has a way to go, but she's on her way ... we hope.

So there's some fairly decent news about Mia's medical problems. We'll take them in as little increments as they want to come!

Norah: Martial artist!

2010-10-10T15:18:00.002-07:00

The other day a couple of flyers came home in Norah's backpack. The school is offering a couple of after-school programs. One is a drawing class and the other is a karate class. We've discussed them both with Norah before, and we asked her again which one she wanted to take, making sure she knew that "neither" was an option. She looked them over and pointed at the drawing class flyer. We asked, "The drawing one, right? Not the karate class?" She said, rather casually,

"I already know karate."

She then extended her arm with the hand flat, pseudo-Nazi salute style, and kicked a bit with her leg while saying, "Hi-ya!" So that was that. She DOES already know karate! Drawing classes it is!

(We don't care which she takes or even if she does. She enjoys drawing a lot, and we know martial arts would improve her confidence, so whichever she wants is fine with us. We didn't expect that reason, though. That's because Norah rocks!)

Yet more stuff about Mia's eating (or lack thereof)

2010-10-05T10:11:00.002-07:00

We had a meeting with Mia's teachers and the school nurse last week about her eating issues. It's not the first time and it's not the last time we'll do this sort of thing, but that's just life with Mia, isn't it?

As I wrote recently, she weighs not quite 41 pounds at she's 4 feet tall. That ain't good. So we've been trying to get her to eat more, which is what we've been doing for several years. They've been telling us that she's not eating well, and all throughout September, they kept track of the calories she consumed, and she never broke 500. As she should probably have 1400-1600 a day, that's a problem. So we had a meeting to come up with some strategies to get more food in her.

The biggest problem with the school is the lack of aides. Mia's classroom, with ten special needs kids in it, has a teacher and two aides in it. According to her IEP, Mia should have an aide with her at all times. With three teachers in the class, that's not completely possible all the time. I was giving them a month to hire another aide, and now that it's October, we're bugging them about it. The TBI specialist for Mesa schools told me that they hired someone and they just need to clear her fingerprints, so that's good news. The reason Mia needs an aide is because she has some issues staying focused (surprise, surprise). When it comes to eating, she needs someone to bug her about it. And for that, she needs her own aide!

What they have been doing with her is bringing the food and drink to her and offering it to her. That's just not going to work, as Mia is, quite frankly, a pain in the butt. So she just tells them she doesn't want any, and they don't push it. So we told them they need to do one of two things:

1. Get a table to put next to her and put her food and drink on it. When she's at home, she sits in her chair with her milk on a tray, and she usually does pretty well at drinking it. If you keep the milk next to her, she'll often drink it herself, and it's also much easier to tell her to pick it up and drink it.

2. Get her to drink the milk (which has 355 calories in one small box, the size of a juice box) in a short period of time, like 30 minutes or less. She can do it, although she doesn't like to do it. If they can do that twice a day, she doesn't have to do a lot of eating the rest of the day, and anything else they can get in her is gravy. It will probably be a bit more stressful than option 1, but it also will get it out of the way much sooner.

Now, the thing she needs is a tough aide. The woman who has been assigned to her is a sweet woman, and I told her a few times on Friday that she needs to be tougher (I did it as nicely as possible, of course). Mia doesn't respond well to pleading, as I believe most kids don't. She needs someone to tell her what to do in a forceful voice (without yelling, of course, because more than most kids, she goes to pieces pretty quickly if you yell at her and it's very hard for her to calm down), and her aide needs to work on that. I hope she does.

We discussed some other things, like how she needs to stand in her stander more (to stretch her out a bit and give gravity a chance to work on her bowels - we think part of why she doesn't eat too well is because she's constipated and doesn't feel good because she needs to get the poop out), but it was mostly about her eating habits. It was a pretty good meeting - we've always had good relationships with her teachers and school therapists - and we're hoping it helps. We do have an appointment with a child psychologist next week, and there are other options with behavioral therapists before we have to put a G-tube in her stomach, so we'll see where it goes. I really don't want to put a G-tube in her. That would suck. But we live in hope, don't we?

Anatomy of Norah's artwork!

2010-10-04T14:10:00.002-07:00

Here is Norah's latest artistic masterpieces:

This is our family. Some things of note:

1. Mia's wheelchair looks like a tank. She would kick so much ass if her wheelchair was built like Norah draws it.

2. We're all wearing winter clothing. Norah, who has lived in Arizona all her life, is obsessed with winter. We're going to Flagstaff over Christmas break, and she's extremely excited that she gets to wear winter clothes and play in the snow.

3. I have no idea what is up with our hands. We're all wearing yellow gloves, apparently, but I don't know why they're so huge.

4. Norah is in the center, and you'll notice that Mia, Mommy, and Daddy are all gazing at her adoringly. She's the only one with eyelashes, too, because that just makes her more adorable. This is how Norah sees the world, I suppose. I suspect this is how many kids see the world.

Norah loves drawing, and it's always fun to decipher what she's drawing. She's quite the subtle little artist!

My daughter the politician

2010-09-28T15:24:00.003-07:00

Today Norah got off the school bus and the bus driver said, "Goodbye, Norah." (I know this because I was standing on the curb - kerb? - and heard him say it.) She ignored him. As we started walking home, I said, "The bus driver said goodbye to you, so you should say goodbye to him. It's just the nice thing to do."

She said, and I quote, "I couldn't say goodbye because I was too excited to see my daddy."

Clever deflection, sucking up to those more powerful than she, smiling as she said it - yep, she'll make a heck of a politician when she grows up!

Norah is exactly like Martin Luther King Jr.; plus, she dominates in school

2010-09-23T15:19:00.003-07:00

This morning Norah told me about her dream. I will try to summarize it, because it sounds awesome. She made the whole thing up, of course, but still.

So, when she was two (if Norah wants to refer to something that happened in the past, it's always "when I was two years old"), she had a dream. According to her, a dragonfly kept coming into her bedroom. First it was a girl dragonfly, and she didn't have a problem with it. Then, a boy dragonfly, and she didn't like that. It turns out that this dragonfly was kind of a jerk. As she hid under the covers in her bed, the dragonfly took all the toys off her bed and absconded with them. Somehow the male dragonfly was either chased off by a female or transformed into a female, whereupon she brought all of Norah's toys back and became friends with Norah. Then a witch came into her bedroom and threatened to take all of Norah's toys, but for some reason she didn't. The dream started to make less and less sense then (because the whole evil boy dragonfly scenario made so much sense) and Norah decided to stop telling me about her dream. She did tell me that when she was "one years old," she didn't dream because she slept in the crib really well. Good to know she remembers that.

Anyway, this week was parent-teacher conference week, and we had no real surprises with Norah's conference. She's doing very well (all "A"s, for what that's worth) and getting better all the time. When she started school, I was worried that she wouldn't want to practice because she wants to be perfect immediately, but she's gotten better at dealing with that, even though she still gets a bit upset when she can't make a letter perfectly right away. But as long as she slows down, she's okay (this is true for most kids and probably people, I would imagine). The teacher told us her behavior is impeccable, which we didn't worry about. As part of the school's push to get parents to volunteer, I was in her classroom on Monday, and although it's always a possibility she was behaving just because I was there, she was very good (and I don't think she's quite that devious yet). I'm a bit worried because she's still pretty shy and she allows stronger personalities to dominate the group, and there's a girl in her class who's very loud and very gregarious and Norah thinks she's neat, but that's not too big a concern right now - Norah might be shy, but she also realizes that sometimes, it's better to distance yourself from certain kids. Overall, however, she's doing very well in school and her teacher is very happy with her. So that's nice.

Of course, she's still scared of dragonflies. What's up with that?

I should really have the house wired ...

2010-09-12T10:56:00.002-07:00

I miss so many fun things that Norah says, or I hear them but then forget them later. This morning, for instance, she strolls up to me.

"Daddy, it smells like dirt in here," says the lass.

"What do you want me to do about it?" says I.

"Clean up the stink!" says the logical Ms. Norah.

She meant that the litter boxes smelled a bit. Considering I had just cleaned them, I guess she could smell the litter and the deodorizer I use, and as I had just stirred it all up, perhaps the odor was a bit stronger. But at least it didn't smell like cat poop!

Clean up the stink, indeed. If only that advice were so easy in the real world!!!!

Mia turns eight!

2010-09-08T16:04:00.017-07:00

Mia's birthday was 30 August, as you should all well know. I can't say it's amazing she's made it to eight years old, considering she hasn't really been in danger of dying since her initial surgery, but the fact is that she has had more surgery than most kids her age, and there's a risk any time you go under the knife, so we feel pretty lucky that she's still with us. Well, we already feel lucky that she's still with us as her initial injury probably should have killed her, but we feel lucky whenever she goes into surgery and comes out fine. You know?

So we had a nice birthday party on Sunday the 29th. Mia doesn't invite her friends because she doesn't really have any (that's not to say she doesn't talk to kids at school, it's just that she forgets them when she's not around them and doesn't socialize with them too much), so we always invite friends of ours, some of whom have children and some of whom don't, as well as people who are important in Mia's life with whom we have close relationships (her therapists, for example, but we always invite her lawyer, even though this year she couldn't make it - but her daughters adore Mia, so it's fun when they show up). Mia, as usual, isn't impressed with any parties - she was fine throughout, but she just wanted to watch TV the whole time. We finally caved and let her watch a DVD after we ate cake. She got some nice presents, had a nice cake (which she didn't eat), and all was well in the land. Norah was allowed to invite one friend of hers, and the kids who did show up went in the pool, and we tried to avoid putting things down our garbage disposal, which my mother clogged up about thirty minutes before the party started (my mom likes to jam pretty much everything down the garbage disposal; if she were a serial killer, that's how she would dispose of the bodies). A good time was had by all!

Of course, I took pictures. What did people do before photographs? Using your vivid memory is for suckers!

Good news would be nice once in a while

2010-09-02T14:08:00.002-07:00

I'm still going to write about Mia's birthday party, but real life intervened, so there's that.

I get very frustrated taking Mia to the doctor. Nothing is specifically wrong with her right now (her wound is healing nicely), but whenever I take her to the doctor, there's something bad happening. It's kind of annoying. Yesterday it was the turn of the gastroenterologist, who's helping us with her weight problems. Krys and I thought she was doing okay - she definitely doesn't look as gaunt as she did a year ago, and while she's not eating as much as we want her to, she's eating steadily. Then I took her to the doctor.

She weighs 40.7 pounds and is 48.5 inches long. So her height-to-weight ratio is way down, and the doctor is a bit concerned. She, in fact, was surprised at how skinny she was when she came in. Now, Mia has always been skinny, but the doctor thought she didn't look good. So she brought up a G-tube again (which goes directly into her stomach), and while I'm still a bit resistant to it, I'm much more open to it than I was a year ago. She also mentioned a form of massage that might help, so we're going to look into that before we put Mia through more surgery. Of course, getting Mia to eat more throughout the day is the first priority. That's always fun.

Mia is healthy, which is a good thing, and the fact that she doesn't eat enough is vexing, because she has no problems with the actual eating. She just doesn't want to. I was hoping that when we went to the doctor yesterday we'd get some good news. I should know better, I suppose. Oh well.

Mia and her goonie!

2010-08-30T13:03:00.006-07:00

Let's file this under "Things that wouldn't happen if my child didn't have a traumatic brain injury."

On Friday morning I had to take Mia to swim therapy. I took her out to the van and put her in the car seat. We had just put in a different car seat because she had outgrown the one that was in there previously. The new seat has only arm rests but no high sides. The instant I put her in, Norah was coming out of the house and she left the door open. I turned toward her and told her to close the door. In that moment, Mia pulled her legs up, as she is wont to do because her tone is so high. She was wearing her bathing suit, which is slippery (it's lycra, I guess), and when she pulls her legs up she is balanced only on her butt. So she pulled her legs up, twisted a bit sideways, and spun right out of her seat. She doesn't fall very well, and she went straight down like a sack of potatoes. She bounced off the floor of the van (or maybe the running board) and hit the driveway. Krys ran out and we picked her up and took her inside. She was gushing blood out of a cut over her right eye. She was screaming her head off, of course, but she didn't throw up and she didn't lose consciousness. I took Norah to school while Krys tried to stop the bleeding, and then I drove her to the hospital. The cut was right to the bone and fairly wide. The doctor put two layers of stitches in, but she was out of the ER by three o'clock in the afternoon and she was back to her old self by five or so. But her eye is nice and swollen!

You might think a cut gushing blood would freak me out. It certainly freaked Krys out, but that's because she's a girl. But as I pointed out, she never lost consciousness, and the doctor checked her out for a concussion, and all was well. But it wasn't too freaky, mainly because we've seen far worse. Still, it was not a fun experience. She went over so fast - I turned my head for less than five seconds and she was out. This is why we keep an eye on her.

And, of course I took pictures. Even with a swollen eye, she's still adorable!

She's not bothering it too much, which is nice. The sutures will dissolve in a couple of weeks, and we'll just hope that's that. We did put the old car seat back in, though. I mean, we're not stupid!

Today is Mia's eighth birthday (yay!), and we had a party yesterday, so I'll post pictures tomorrow. Come back, won't you?

School: The first few days

2010-08-21T17:31:00.002-07:00

The kids have been in school for a week and a half now, so there's some things to tell. I am in Pennsylvania, and I arrived here on Thursday, so I don't know how the end of the week went, but I know how the first few days went, so here we have it!

We found out a few days before school started (on the 11th) that Mia was getting ... a new teacher! Yay! Her fourth in four years, mind you, which is probably SOP for most kids, but for Mia, it's kind of a pain. Her teacher from last year, who had made such strides in figuring out to deal with her, left and went to a different district (presumably for more money, as it's in Scottsdale). And not only is her teacher new, she's also a first-year teacher, just like last year. Don't get me started on teacher retention!

We thought about sending her to a different school, but we figured we'd at least meet the new teacher and see what she was like. She seemed much more focused than her teacher did last year, and she seemed to have a better plan for teaching Mia, which was nice. The Traumatic Brain Injury specialist for Mesa Schools was also impressed with her, so we decided to give her a chance. Mia is eating better (although not great) this year, and physically she's sound, so neither of those should be an issue. But we're still going to keep an eye on the new teacher to make sure she's doing a good job, and we're not going to let it go on too long if she's not. Mia deserves better, confound it!

She's been doing fine so far, although I'm a bit concerned about her eating. They keep a food diary for her because we want to know what she's eating during the day. She seems to be eating regularly, but I sent a bag with a whole bunch of stuff in it for her to nosh on throughout the day, and they don't seem to be giving it to her. Mia will not sit down and eat in ten minutes at lunch time - that's just not how she rolls. She will eat throughout the day if you give a little bit at a time. She's been eating a lot of goldfish crackers, and while that's okay, she has a lot of other foods at school, so I may have to go in and ask what's up. She is also still drinking the Kid Essentials milk drink, which has a ton of calories and fat in it. I took some fruit juice to school to keep her hydrated (the Kid Essentials isn't great for that), because over the summer she decided she liked it. It doesn't appear they're giving that to her. They write that during lunch she drinks chocolate milk. Well, that's groovy, but I don't want her to drink chocolate milk - if they're going to give her milk, give her the Kid Essentials! So after next week (I'm in Pennsylvania until Tuesday and my mom is currently visiting to help with the kids and she'll still be there, so I won't have a ton of time to sit in on her class), I'm going in to have a chat with the teacher. We shall see what transpires then.

Norah, meanwhile, is doing well in kindergarten. Krys was going to take her the first day, but thought she might freak out a bit too much, so I took her. She was fine. Once she got in the room and found a book in her desk, it was as if I didn't even exist. So I was fine with that. She took the bus home, and that turned into an adventure. Her bus is supposed to arrive at 3.18 in the afternoon, and the stop is at the end of our street, which I can see from the house. Mia's PT works with her from 2.30-3.30 on Wednesday, so he was there. I didn't want to leave him with Mia in case Norah's bus didn't get to the stop until after 3.30 (it was the first day; I was expecting it to be late) and he'd have to stay with Mia. So I stood in our driveway looking for the bus, hoping I could see it and run down and catch it. Yeah, that wasn't a good idea. It drove by at about 3.40, just as Mia's PT was leaving. I wasn't sure if it was her bus, but I kind of thought it might be. So I called the school. The line was busy, a message said. I kept calling the school but could never get through. I didn't know what to do, because I didn't want to leave Mia. I could have put her in the car and driven to the school, but I didn't know if that bus had actually been Norah's and I didn't want to miss it if it happened to go by. So I was stuck. I made the mistake of calling Krys, who freaked out. I told her that Norah was fine - she was either at school for some odd reason or still on the bus ... wherever that might be. They wouldn't just kick her off. The only problem was that I didn't know where the bus was. So she looked up the Transportation office for me and I finally managed to get a number where they could contact the bus. Krys left work and went to the school, but I was able to find out that the bus was coming back, so Krys went down and picked her up. She thought Norah would be upset, but I pointed out that Norah didn't know that she wasn't supposed to be on the bus for 90 minutes (as it turned out she was), so she wouldn't be upset. It turned out, of course, that the bus I saw was her bus, and because I wasn't at the stop, it took off. I know it's my fault, but you would think that on the first day of school, when you're almost 25 minutes late, you might call the dispatcher and see if you could track down a parent to get the kid. Or maybe not. I did find out that the school's phone lines weren't busy, they were down completely. Good move - the first day of school, and your phone lines are down. Excellent.

But Norah is doing fine. She's still very shy, so although she tells us she plays with a kid or two, she doesn't know their names and can't tell us much about them. When I take her to school in the morning, she gets in line quietly and tilts her head down slightly so that nobody looks at her. She already has quite a bit of homework, but she and Krys sit down every night and get through it. When I dropped her off on Wednesday, the teacher said she's doing very well. I figured she would be fine at the work - Norah is very good at doing what's she told (most of the time), especially from teachers. I know she'll make friends; I just hope it's soone rather than later.

So that's the first week or so at school. Krys and I both have to volunteer at Norah's school, so that will be fun, and I'm sure I'll be visiting Mia's school to suss out what her teacher is doing for her. Good times!

It's the first day of school!

2010-08-11T18:03:00.000-07:00

I'm freeeeeeeee!!!!!!

FREEEEEEEEE!!!!!!

FREEEEEEEEE!!!!!!

FREEEEEEEEE!!!!!!

FREEEEEEEEE!!!!!!

FREEEEEEEEE!!!!!!

Plenty of information about the first week of school later!

On the road with Mia and Norah!

2010-08-07T13:26:00.007-07:00

Two weeks ago the family went on a mini-vacation to Lake Havasu City, Arizona. We couldn't afford to do much, but Krys found a "stay two nights, get the third one free" deal for the London Bridge Resort, so we figured it was a place we ought to see before we escaped from Arizona. Lake Havasu City is famous, if it's famous for anything, for buying London Bridge 50 years ago and transplanting it into the Arizona desert. (It was actually the tycoon who created the town who bought it, and then he donated it to the state, who gave it back to the family when it became too expensive to maintain, so it's now considered the world's largest antique.) So we loaded the kids in the van, and off we went!

The drive west and then north across the desert ought to be wildly uneventful, but that wouldn't be any fun, would it? About ten miles on this side of Quartzsite, AZ, while we were still on I-10 and about 85 miles south of our destination, the van's air conditioning went out. Actually, it started blowing hot air, which was, if possible, worse than it going out (and Krys continued to leave it on, blowing hot air at us, because she claimed the moving air would feel better than nothing - I didn't buy that). So we continued on in our suddenly very hot van. And then north of Quartzsite on the road to Lake Havasu, I got pulled over by a cop.

This police man claimed I was speeding, doing 62 in a 45-mph zone. I was a bit grumpy not only because of the lack of AC but because I was convinced I was in a 55-mph zone and therefore shouldn't have been pulled over (using the strange logic that doing less than 10 mph over the posted speed limit doesn't count as speeding, which seems to hold no matter where you are). Krys told the cop that our AC was out and that we had kids in the car (I didn't want to because I didn't want to sound wheedling; women can get away with pleading for leniancy more than men can, I think), and I just told him that I was in a 55-mph zone and if he needed to give me a ticket, he should just get it over with (I told him to do what he had to do, because I didn't really care - I just wanted to get moving again so we could get there). He went back and talked on his radio for a bit and then let me go. How nice of him. Krys was convinced that he let us go because he made a mistake and we really were in a 55-mph zone. When we were coming home we looked at every sign on the opposite side of the road, and I'm fairly sure she's right. He probably didn't admit it because I was being a bit of a jerk. But I knew it was 55 there!

Norah did not have a pleasant journey without the AC. Mia didn't either, but she's so stoic that she only started getting whiny right at the end of the voyage. She also didn't drink as much as she should have - we kept giving her water and she just ignored it, because that's what she does. We put the windows down a bit and hoped we could get there as fast as possible, but Norah started whining pretty early on in the non-AC portion of the trip. She needed to pee, so we stopped. She said she needed to poop, so we stopped. She didn't poop, however, and I told her the more we stopped, the hotter it would get and maybe she could soldier on. We finally made it to the hotel and almost ran into the air conditioned lobby. Both kids were bright red. It was no fun at all.

The next day I took the car to the local Toyota dealer, and they kept it until we left. That was through no plan of ours, of course - they had to order a new compressor, so getting it fixed on Monday was out (we arrived on Sunday night). They started working on it on Tuesday, but it took longer than they expected (which always happens, of course). I told them we were checking out on Wednesday morning at 11, so I had to have my car by then, and on Wednesday morning I was able to get to the dealer and get back and on the road by 10, so at least they were good with that. We didn't really need a car - there's not a lot to do in Lake Havasu, especially with two young children (and one handicapped one), so we knew we'd probably stay near the hotel for two days, but it still would have been nice to have one. We didn't go out to dinner because even though there were some restaurants near the hotel, they were too far away to walk (it's still summer in Arizona, after all). We were staying in a time-share-type room, so it had a kitchenette and we had plenty of food, so that wasn't a concern, but it would have been nice to go out once. But we really didn't need a car, so that wasn't an issue.

We had a nice relaxing few days. Mia, of course, wanted to watch TV the entire time, so I spent a good deal of time in the room (luckily they had Wi-Fi, so I could get on the Internet). Norah and Krys went in the pool a lot. We did go on a boat ride around Lake Havasu and the island that was created when London Bridge was erected, so that was fun - nice and windy, and highly informative. The kids didn't love it, but that's just the way it is, right? We also walked across the bridge on Tuesday and ate lunch on the other side before walking back. As I mentioned, there's not much to do. We thought about renting a canoe and heading out by ourselves, but Mia would be a pain in the butt and I doubt if Norah would have enjoyed it, either. Maybe when she's a bit older and can help more. I didn't really care - it was relaxing after two hectic days at the San Diego Comic-Con.

So we came back on Wednesday and settled back in. Krys took the entire week off from work, so she had a couple of days at home to recharge. I certainly don't think that Lake Havasu is a wonderful vacation spot, but it was kind of neat to see the bridge, mainly because it looks so out of place. Maybe next year we'll be able to go someplace a bit more interesting for a vacation!

This week the kids go back to school. The drama has already started! But that's a post for another day!

Why selling the kids to the gypsies ought to be an option

2010-08-01T07:50:00.003-07:00

So there I was, sleeping away on Friday morning on the sofa bed.* I felt someone tapping on my back. I rolled over and there stood Norah, holding a section of the newspaper. She pointed at the line of wine bottles on the front (it was the food section) and asked, "Is this all poison?"** I said yes, and she walked away. I looked at the clock. It was 5.52 in the morning!

Yes, my child woke me up before 6 a. m. to ask me if something in the newspaper was a photograph of alcoholic beverages. If that doesn't constitute parent abuse, I don't know what does. We're just keeping our eyes out for a camp of gypsies to roll through Mesa. They'll take her off our hands!

* I snore a whole heck of a lot, and Krys can't sleep because of it. In a perfect world, we'd have two bedrooms, but as we don't, I sleep on the sofa bed. She offers to do it, but I'm the one who snores, so I should suffer!!!!

** After Norah's birthday, we had some beer left over, so I was drinking it at dinner. She asked what it was, and I told her it was poison and that adults can drink a little because they're older, but it wasn't good for kids. It was just a joke, but of course Norah ran with it. Hence the poison comment.

Norah's art

2010-07-25T07:42:00.007-07:00

In the middle of these lazy, hazy, crazy days of summer, when I fail to post because nothing huge is happening, Norah's school had an art show. And I thought I'd show off her work right here!

You'll note that the first one is a still life of fruit, the third one is a mosaic, and the fifth one is Squidward's house from SpongeBob SquarePants. We're pretty impressed that she was able to draw it from memory (at least we think it was from memory; I doubt if the school had a model of the house lying around). You'll also notice that her fake smile needs work. She'll get better at it - she's only five!

Norah loves the farting!

2010-07-12T19:37:00.002-07:00

Not the actual action, mind you, although that does crack her up. No, she likes the word "fart." Well, who doesn't? So Krys was reading How to Train Your Dragon to her because they saw the movie earlier this year and Krys thinks it's fun to read books that they've made into movies, because Norah pays closer attention (I guess). Apparently farting is a big part of the book. So Norah was flipping through it and she wanted Krys to tell her what one of the characters did, because apparently he breaks wind quite often. Krys knew what she wanted her to say, but she was being coy. Krys told Norah that she had read the book, so Norah should know what the character did. Finally, Norah offered up this admonition: "You're a mommy, you know what he did! Think about it!"

I've written before that I dig sassy Norah. She's not really being bad, just goofy. And it comes out sassy. She giggled when she said it, because she just wanted Krys to say "fart." Because she's, you know, five.

Norah's rough life

2010-07-02T20:28:00.003-07:00

Poor Norah. She has such a hard life.

The other day I got my car washed. I got vanilla air freshener in it when it was detailed. When Norah got in, she said, "It smells like meatloaf!" in a very sad voice. We're not sure how she knows what meatloaf smells like, but it made her sad. Poor Norah!

Then today she revealed her homophobic side. A song was on the iPod, and Norah asked what it was. I told her and she asked if the dude was singing to his girlfriend. As the song doesn't specify to whom he is singing, I said he might be singing to a boy. She laughed and said, "He doesn't have a boyfriend!" as if it was the silliest thing ever. I said some of the boys at her school had friends who are boys, so why couldn't the guy be singing to a boy? She giggled again and said, "We have a mommy and a daddy, not two daddies!" So much hatred in her heart! Poor Norah!

She's been acting kind of weird lately. She's fine at school, but when she comes home, she gets very sullen at the smallest things. If we tell her to clean up her toys, she sulks and whines about it. If she asks us for something and we say no, she sulks and whines and even cries about it. She gets so upset if life doesn't work out exactly the way she wants it to, and while that's not surprising for a 5-year-old, the fact that she doesn't seem to be able to control it is vexing. I finally told her that I was going to start taking toys away from her if she keeps doing it, and yesterday, she kept crying when I told her she had to wait to watch television until Mia came home. So I took her new video game thing away from her (the one she got for her birthday which allows her to draw and identify colors and whatnot - it's edumacational!!!!), which really upset her. I told her if she kept behaving poorly, she might not get it back. I just want her to think about it before she flies off the handle, because that's the most annoying thing - she just goes to pieces and can't pull herself together. So I took her game away and told her she'd get it back when she behaved herself. She might get it back tomorrow if she's good. In the meantime, she's sad. Poor Norah!

Boy, her life is hard. I don't know how she stands it!

Birthday time!

2010-06-22T17:20:00.009-07:00

Man, I really stink for not updating. We're just in the middle of the summer doldrums - it's well over 100 degrees here, so it's just c-a-t hot all the time. Plus, the kids are in school every day, so there's just not much to report about them. But hark! Today is Norah's 5th birthday! Man, she's five. That's just ... wow. And we had a party for her on Sunday! And I took pictures! Whoo-hoo!

She had a good time. Only four kids from her school showed up, but the five of them had a good old time swimming in the pool and playing. Krys had put together an activity for them - they made their own pizzas (she stole this from a friend of ours, who did it at one of her kid's birthday parties a few years ago). So they were in the pool for a while, made some pizzas, ate them, opened presents, and had cake. Exeunt! Norah got some nice swag, although I think she didn't need anything at all, but that's just because I'm cranky. The kids were all very well behaved (for the most part). Norah took her swim goggles off at one point and a friend of hers put them on. When she wanted them back, I told her to ask the girl nicely if she could have them back, and the girl said no. So I had to appeal to her father, who set her straight. When she was opening the presents, Norah was, not surprisingly, a bit greedy, but nothing too evil. They all played well together and nobody had any meltdowns. That's really all that mattered! Krys got Norah a little learning video game that she loves, so she's now not watching as much television, although she is playing video games. Why can't she just read Moby-Dick or Ulysses?

Today, her official birthday, she had to go to the doctor and get four shots. Yeah, that wasn't fun. But she only cried a little bit and then calmed down. She's officially 36.6 pounds and 43.75 inches. Her vision is dandy. All is well! She's been having some issues with pooping recently - she'll go once a day, which is fine, but it was at about four in the morning and it didn't come out easily, causing her some grief. It wasn't diarrhea or too, too hard, it just took a while. So we've been giving her more water (she loves soy milk so much that it's hard to get her to drink water) and trying to force more fruits and vegetables into her. She doesn't mind fruits and vegetables, she just doesn't dig them too much. This past week has been better - she still gets up really early to use the bathroom, but she hasn't been having too many issues with it. The doctor said she looked fine and gave me some more tips about smoothing her out. But she's perfectly healthy, and loving going to school all day, every day!

So here are some photographs from the party. Enjoy!

I don't know how often I'm going to update this over the next six weeks or so. When the kids start school I'm sure I'll have more to say, but we're in hibernation mode here a bit, so who knows. Maybe our trip to see Toy Story 3 this weekend will be eventful. You never know!

School is OVAH!

2010-06-02T21:26:00.002-07:00

Mia and Norah wrapped up their school years last week, although they're both going to summer school, so it doesn't really count too much. Norah is totally ready for kindergarten in August, so I'm glad she's going. Her teachers think she's ready and so do we. This summer she's actually going to summer school all day, every day, and after two days, she's ecstatic. She still hasn't wrapped her brain around the fact that she gets to go every day, even though we've told her. Tonight she asked Krys once again if she was going to school tomorrow, and when Krys told her she was, she got really excited. I hope that she still thinks that way after a week or two of going there. I don't know how long this enthusiasm for school will last, but we're trying to encourage it for as long as we can!

Mia, as usual, loved school all year. I've written quite a bit about her school year and how much better it got as it went on. I know that in the final weeks she was working very hard and enjoying herself a lot, and I know that her teachers had really made great strides with her. Her physical trauma with her hips is almost all in the past, and that makes her so much happier it's almost unbelievable. Even when she hurt the most, she was always happy, but she was so much quicker to cry because of the pain. Now she moves fairly well and I can move her almost all the time without making her cry in pain. She's been walking a bit (with help, of course, but still) and moving much better. In the past few weeks of school, her attention improved and, not surprisingly, so did her skills. Her teachers have worked really hard to help her, and that, combined with her healing, made her final few months at school so much better. We hope that the fact that she's going to have the same teachers and at least one returning aide next year will make next year even better. I don't see why it wouldn't!

So that was the school year. Mia starts summer school/camp next week, which she digs, and we hope that both kids keep enjoying school. Why wouldn't they? School is awesome!

A quick one while he's away

2010-05-31T08:59:00.003-07:00

I'm going to write a decent post about both kids' school years, now that they're over (most schools in Phoenix finish the week before Memorial Day, as that's when it starts to get really hot), but before that (it'll probably be up tomorrow), I just thought I'd share another good quote from Norah.

Her birthday is coming up (you all bought her presents, right?) and she knows it (it's 22 June, by the way). So everything she sees on commercials piques her interest. She told Krys that she wanted something for her birthday, and Krys said, "You seem to be getting a lot for your birthday." To which Norah responded:

"That's what birthdays do!"

Well, of course they do. She didn't say angrily or snottily, which would have earned her a rebuke. She said it more self-evidently, as if she couldn't believe we didn't know that. We keep telling her that she won't get everything in the world for her birthday - we'll see if she remembers that in a few weeks.

(The title of this post, by the way, refers to an old song by The Who. I don't even like the song, but I thought it made a nice title of the post.)

Let's quote Norah some more!

2010-05-25T19:17:00.003-07:00

It's been a while since I quoted the younger daughter, so let's fire it up!

Today I put her in the car to drive to the swimming pool (ours is still too cold - the weather here in the desert has been very weird, as it hit 100 degrees last Friday but then cooled off considerably over the weekend; the water can't get any warmer with the weird spikes and dips in temperature) and she told me to put the air conditioning on. She said, "It smells hot in here." You know what? She was right.

Later she collected all her animals together on the sofa and was talking to them as if she was the teacher and they were the class (she does this quite often). She told them they could sing one of two songs. She said they could sing a horse song or a cat song. In a warning tone, she explained, "It has a cat in it." Well, thanks, Norah. I know I was confused!

Next time you visit someplace where the temperature is a bit high, make sure to tell your host that it smells hot in there. I'm sure that will go over well!

She's come undone

2010-05-24T12:31:00.007-07:00

I was going to write a smug post about how lousy other parents are, but then my own child proved what a lousy parent I am, so this will be about kids and what freaking nutters they are. Won't that be fun?

So last Tuesday was Norah's performance at Little Gym. I've shown video before, so I won't do it again, but I will sprinkle some pictures throughout this post. She did a good job tapping and balleting through her routines, as I figured she would. She's been dancing there for a while, and I think she was the oldest one in the class (which will be important later), so she is a bit more mature than the other girls in the class (or so I thought). She likes dancing, and so I was happy to see her following the teacher and doing a nice job dancing. She's made a lot of progress over the past few years at Little Gym.

The class then did some gymnastic routines for the parents. The teacher asked who wanted to go first, and Norah demanded that she be the one (another girl jumped in a bit late; the teacher finally chose Norah first then the other girl, but I thought there might be some hurt feelings there for a second). She did a short routine on a balance beam and then sat down. All the girls did the same routine (there were seven girls, I think). At one point, Norah got up and began hanging from a bar next to the balance beam. I told her to sit down and be quiet, because the other girls were quiet for her. She went back to her spot and sat down. The reason I was peeved at the other parents was because at least three girls ran off to the bars and were hanging from them and trying to put their feet up on them and flip over. They were making a lot of noise and being disruptive. At least one parent was sitting right next to her daughter and not doing anything to shut her up. She didn't tell her to sit down or that they were going to leave if the kid didn't hush. These were girls who had already performed their routine and had the rest of the class sit quietly while they did it. Now they were being rude, and their parents didn't care. When Norah got up and wandered over to the bar, I told her, not angrily at all, that she needed to sit down or we were going to leave. She knows not to test me. I'm sure some parents would argue that their kids are too young to sit still - one of the girls in her class just turned 3, I think - but that's crap. Norah could sit still two years ago if she knew there would be consequences if she didn't. I just couldn't believe these parents weren't more embarrassed that their kids were being rude when their classmates were trying to do their routine. I may not be a great parent, but I know enough to be embarrassed when my kids are behaving poorly, because it reflects really badly on me. I was really angry at these parents. It was just sad that some of the kids were trying to do their routine while some of their classmates were running around shrieking.

Of course, Norah, after behaving so well when I told her to, had a meltdown later. It was partially my fault, but she still needs to learn how to behave. Krys took off from work to see the dances, but she, of course, had to go back to work. Norah has been fairly good about leaving Mommy behind recently, but on this day she reverted to the old Norah. I usually give her ample warning when we're about to leave, but last week I sprang it on her, and I don't think she was ready for it and didn't prepare for leaving Mommy. So she freaked. She started screaming uncontrollably and would not calm down even as we both spoke softly to her and told her everything was fine. I was trying to put her shoes on, but I finally gave up, picked her up (she had one shoe on), and carted her away. I was giving Krys the camera and Norah's shoe bag, and Krys wondered why she had to carry it all. "Because I'm carrying her" was my logical answer. I simply took her right out of the Little Gym, because I'm not self-absorbed enough that I don't get embarrassed when my daughter is behaving poorly. She should know better, and she didn't. So I didn't care about getting her shoes on or even trying to calm her down - it was time to leave.

She didn't calm down in the car all the way home. She screamed pretty much constantly, so I just turned up the iPod and ignored her. When she got home, she was still whimpering and whining, so I didn't say a word, just took her by the hand and showed her calmly into her bedroom so she could scream in peace. After a minute or two, she knocked on the door. When I went to the door, she asked if she could get dressed (she was wearing a leotard that she danced in). I told her that her clothes were in her room, so she could get dressed by herself. She came out perfectly calm, and all was well. What a weirdo.

I did take her back to Little Gym about an hour later and made her apologize to her teacher. She was scared that they would be mad at her, but her teacher was just worried that something had happened to her. I told her that it was just a Norah freakout, and Norah needed to accept the responsiblity for bothering the class. Norah apologized very nicely and we moved on. I don't know why she freaked out so much - she used to do that when she'd see Mommy in the middle of the day but couldn't stay with her, but recently she's been much better about it. I really do think it was because I surprised her with the knowledge that it was time to go and Krys had to go back to work. It was just too much for her! But still - she shouldn't have melted down like that. She's not Norma Desmond.

We're taking the summer off from Little Gym, because I think she's a bit burned out. Plus, they don't have very good times for the dance class, so it was as good a time as any. We'll see if she wants to go back in the fall.

In other news, Mia won a "fairness" award at her school last week. The school has "six pillars" of good behavior, and Mia, I suppose, is just so fair that they had to give it to her! So that was nice. Here she is with her little certificate:

This week is the last week of school, but both kids are going to summer school pretty soon. Norah won't get any time off and Mia gets a week (next week), but as they both love school, neither of them minds going back for the summer. Plus, it gets them out of my hair! And isn't that really all that matters?

Man, where have I been?

2010-05-16T16:46:00.002-07:00

I apologize to my legions of fans for taking such a long break. The lovely Ms. Kelli Solly actually took me to task on Facebook for not updating for so long. I never even got around to writing about Mia's IEP meeting, and we know how much fun those are!

So where have I been? Well, a few weeks ago Krys had a terrible pain in her gut. So terrible, in fact, that she had to go to the hospital. She spent five days in the hospital, during which time they found out she had ischemic colitis (charming) AND gallstones. They had to clear up the colitis before they could do anything about the gallstones. They considered leaving the stones in because gallstones don't really cause any problems unless they're blocking the duct ... which hers were. Of course. So she had to get her gall bladder removed, which they did endoscopically, so she didn't have to have major surgery. So I wasn't really thinking too much about posting here.

Then, last week, my mother came to town. She stayed for a week and a half, and I just didn't have much to write about. I knew I should write something, but everything is fairly normal around these parts right now, so there's that. Yay, lack of drama!

I should point out that Mia's IEP meeting was completely without acrimony, which was a bit surprising. Mia's teacher didn't push for her to be put in the lower-level class, and as it turned out, she didn't qualify for it anyway. Mia's teacher has done a great deal to learn more about Mia's brain injury and how to deal with it, and both she and Mia have made great progress in the past few months. I'm very happy that she has tried so hard, and I think Mia being in her class next year as well will help because a new teacher won't need to figure Mia out. So all went well there.

Mia is also improving physically a lot. She has no more stitches in her groin and the skin is getting tougher every day. Her PT has been making her stand quite a lot, and he's going to start making her walk this coming Wednesday. She doesn't seem to have too many issues with standing, which is nice. We'll see how she deals with walking. Probably not well.

So all is pretty well at the Burgas homestead. Mia has two weeks left of school and then she gets a week off before summer school begins. Norah is still having a blast at school - her teacher has told us she's very ready for kindergarten - and she too will be going to summer school, this time all day (as opposed to last year, when we weren't sure if she could handle going all day). That should be fun.

I promise that three weeks will not pass before I write again. I might not have many readers, but I know those who do read like it when I update it! I'll be better, I swear!

Norah dispenses wisdom to her dumb daddy!

2010-04-24T15:05:00.004-07:00

This week, Norah and Mia got a tea set at the doctor's office (don't ask). It's a nice one, too - it's a Tinker Bell set, and everything is made of china, not plastic. She wanted to play with it when we got home, but I told her to wait until Mommy got home. When Krys showed up, she bugged me again. I really didn't want to get it out because I was afraid she would break a piece or two and wanted Krys to impress upon her that she needed to be careful. I told Krys that I wanted her to show Norah how to play with it. It wasn't exactly what I meant, but I said it anyway. Norah indignantly said, "I know how to play with it. You get your dolls out and you have a tea party!" Well, I guess she told me! And so she did:

They're naked because it's a pool party, so they have to take their clothes off. And yes, Norah got a haircut this week. Last weekend she cut a bit of her hair off (not the first time she's done this, if you recall) and so I took her to get it fixed up, and she said she wanted it short. We think she was jealous that we were making such a big deal of how pretty Mia was with short hair. But of course, Norah and Mia are adorable no matter how long their hair is!

(Krys went to her parent-teacher conference for her pre-school - yeah, I know - this week and they said she was definitely ready for kindergarten. I figured she was, but it's nice that others share this opinion. August can't come soon enough!)

Seven-Up

2010-04-18T12:37:00.018-07:00

As long-time readers of the blog know, every 18 April I post about Mia's accident, which occurred on 18 April 2003. Yes, seven years ago today. It's a bit odd to realize it's been that long - days may be long, but years tend to speed by, I guess. I always like to assess Mia's progress throughout the year, so let's go to it!

I have written about the accident before, here, so there's no need to rehash. I try not to dwell on it, because it happened, and we all need to move on. I mentioned to a few people that today is her "anniversary," and they mentioned that it's probably a rough day for me. It's not really, because it's not like I don't think about her predicament every day, so this is just another one. It's a useful date to ruminate about her progress, that's all.

Just like last year, the big news this past year has been her hip and her problems with it. She had the surgery in January 2009, and in April of last year, she still had the metal plates in her hips helping her heal. She got those out in July, but she developed a stress fracture in her groin that needed to heal. She got over that, but by November she was having problems again. Her adductor muscles in her legs - the ones that pull our legs toward the middle, as opposed to the abductors, which pull them outward - have such high tone (a consequence of her accident) that even after the surgeon cut two tendons in her legs, they were still pulling her legs across midline, which was causing a great deal of stress on her hip capsule, so the doctor had to operate once again. In February he went back in, cut another tendon, cleaned up some scar tissue from the fracture, and fixed her hip capsule. She was in a abducting cast for a bit over two weeks, the cast keeping her legs spread farther than is reasonably comfortable. I told people who didn't see her to stand up and spread their legs out as far as they could in a split. Then do it a tiny bit more! Then stay like that for two weeks. Yeah, not too comfortable. The idea was that her abductor muscles would be strengthened by this and when the cast came off, she would be looser than she had been. It worked ... to a degree. A few days after her cast came off (and after she had a few very good days at school, because she felt so much better), the incision in her groin opened up. That wasn't pleasant. Again, imagine a wound right where your leg connects to your pelvis and think about how much that area moves during the day. Even for a kid like Mia, who doesn't walk, there's a lot of movement in that area. So Mia was really uncomfortable and a lot of her looseness in her muscles went away, as she tends to tense up when any little thing hurts her ... but unlike regular folk, it's very hard for her to relax, so she just spirals a bit into more and more pain. Her surgeon finally decided to stitch up the wound (instead of letting it heal naturally, which, given how large the hole was, wasn't going to happen too soon), and that helped a great deal. She's much more relaxed and loose over the past few weeks (she had the wound stitched about a month ago) and she's working harder at therapy. She's been riding her horse again, which keeps her legs apart, and having a grand time doing so. She's been in her stander at school and isn't complaining about it (well, until she's been in it for 45 minutes or so, but that's to be expected). We don't keep her legs as far apart for as often as the surgeon recommends, because it's impractical, but we do make her sit with a big wedge between her legs for a little bit every day, and she sleeps with a large pillow between her legs (when she keeps it there, which isn't often). This past week the surgeon took out half of the stitches, and the rest come out next week. I very much hope that the wound won't re-open, because that would, well, suck. So far the half-stitched wound seems to be staying closed, which is nice, but once the rest come out, that will be the real test. Her surgeon seems remarkably optimistic that it won't pop open given that it's, you know, already done that, but we're going to be careful with that as we move forward. No big wide stretches until we're sure the skin is completely healed, in other words.

That's the big news of the year, mainly because it's taken up so much time. She's basically missed over a year of physical therapy, even though we can still make her do a lot of what she was doing before. She was doing her usual therapy in the pool last summer, and when the weather got better she was able, for the most part, to switch to the horses (not when she had the cast on, obviously, but other than that). It's only in the last few weeks, however, that her therapist says she seems comfortable on the horse, and with Mia, if she's not comfortable, it's very difficult to get any meaningful therapy out of her. Meanwhile, she was just starting to stand again last summer when she got the plates out and then fractured the bone. So that was a setback. Then, when that healed, she began hurting again, which led to the surgery, which was another setback. She's just started standing again, and in the meantime, her PT hasn't been able to work on her walking for well over a year. In late 2008, she was doing very well walking (with help, of course), even though she was pulling her legs across midline too much. After the surgery, she couldn't walk for months, and because of all the problems, she hasn't been able to start again. Her horse therapist made her walk a bit a few weeks ago, and she did fine, so maybe she'll be able to start again. Her home PT is a bit tougher on her, however, so I anticipate the screaming will begin again fairly soon!

The other major event that happened this past year is the switch to a different school. She was in the same school for the first two years of her schooling, and it was pretty perfect for her. The class was small and had almost as many aides as kids, and the teachers and aides were all very experienced with TBI kids. She had made a lot of progress there, and so of course Mesa Public Schools killed the program. They claimed there weren't enough kids for it (which is a horrible, horrible lie) and they couldn't afford to keep it going (which is true, but they based that on the fact that they didn't have enough kids for it, which is, as I may have mentioned, a horrible, horrible lie). So we had to switch schools and put her in a different program. We chose a school that is actually closer to our house, which is really the only improvement. It's not that it's a bad school, it's just that they have two different Special Ed. programs and neither really works perfectly for Mia. We put her in the higher-level one even though we knew she'd be slower than the other kids, because in the other class, she'd be the highest-functioning kid, and we want her to have good role models in school, so the first class was better that way. As I've chronicled throughout the year, it's been a challenge. After her surgery last January, she dropped about six pounds (considering that she was barely over 40 pounds to begin with, that's no good) and still hasn't recovered all of the weight (for a 7-year-old, she's about ten pounds underweight, as she has always had problems eating). When she got to the new school, we told them that getting her to eat was the biggest priority, and they spent months getting her to eat while we tried at home. Finally, she was eating relatively well, and they could concentrate on other things. Meanwhile, her first-year teacher was having some issues figuring Mia out. For those of you who don't read this blog regularly (shame on you!), Mia is like every other 7-year-old, in that she likes to manipulate adults. However, she tends to cry loudly very often, because she's often uncomfortable. It's hard to tell when she's in real pain and when she's crying because she doesn't want to do something. As Mia is very adorable and as she's obviously disabled (she's in a wheelchair, after all, and doesn't talk too much), it's harder for people who don't know her well to call her on her BS. People tend to want to hold her and make her feel better, but when she's crying just to get out of, say, sitting on her own, that's not the way to go. It took me a while to harden my heart, so to speak, to her crying, but I've spent years with her learning her ways, so I know when she's really in pain and when she might be in some discomfort but is also grumpy that we're actually make her, you know, work. Her teacher is finally, after several months, starting to understand this, but it was a tough road. Her PT and I actually went in to her class in November to show them that Mia could actually sit on her own quite well, because whenever they moved her, she would cry and they thought it hurt her too much and that she would fall over. She falls over occasionally, but it's much less common than you might expect. Her teacher finally gets that Mia is, in many ways, a typical 7-year-old, and if she doesn't want to do something, she whines about it. Unfortunately, when she whines, it tends to come out like crying, so people take it much more seriously.

She has adjusted to the new school, and in this calendar year, she's making great progress. I just wrote about her IEP meeting a few days ago, so I won't recap here, but everyone who sees her in class is impressed with her progress. She is slowly learning to read simple words (mostly CVC, but a few longer ones, too) and she is doing some rudimentary addition. Her handwriting has improved a little, but we don't really care about that too much - so much is done on computers these days that if she can sign her name, we'll be happy. Her computer skills are improving, as well. Once the teacher understood that she didn't have to meet all her IEP goals this year, she relaxed and started simply getting Mia to learn as much as she could. That seems to have helped a great deal.

We continue to see improvement in Mia, but it's, of course, very slow. She's talking much more, but she still doesn't really have conversations with people - she's very goal-oriented with her speech, as in "I want _____!" and such. She seems to vacillate between not pinching very much and pinching a lot - she's still not really aware that it's not the best way to get someone's attention, but she doesn't pinch everyone, so she knows it's not very nice. She's getting better at knowing who people are and learning their names, so even if she doesn't engage them in conversation, she's very good at saying hi to them and using their names. She and Norah still have a good relationship - Mia occasionally pinches Norah, but Norah has gotten smart enough to stay out of her range for the most part or at least walk away when Mia does so. Norah has been a big help this past year (and for longer, but especially this past year), because she's gotten older and more knowledgeable about what we want her to do (not much, trust me - she's four!). It's interesting to watch Norah, because it seems like she's a bit more mature than most 4-year-olds, and I wonder if it has to do with the fact that we ask her to help out with Mia a bit. Just today I asked her to hold Mia's arm while I changed Mia, because Mia is unhappy with the stitches in her incision, especially as they itch her a lot. She tries to scratch them as I change her, so Norah held her arm - no small task, as Mia's right arm is quite strong - and did so admirably. We ask a lot of Mia, but we also ask a lot of Norah, and I'm proud of both of them for rising to the occasion so often.

2009 and 2010, so far, have been tough years. Before Mia's surgery, she was making progress at school and in walking, but she really needed the surgery because it would have just gotten worse and worse. Her surgeon told me a year ago that hip surgery is usually the hardest surgery from which to recover because the hip is such a crucial fulcrum in the body and there's a great deal of stress on it. So I don't know if Mia's recovery time is slower than usual - I suspect it is, but I don't know - and that's why this past 15 months have been so hard. She seems finally to be coming out of it, and that's why I want to keep it slow so she doesn't have yet another setback. We always take the long view with Mia, because everything she does takes so long for her to get, but it's still frustrating losing over a year of therapy. But we're still hopeful about her. I despair occasionally, of course, because I honestly don't know if she'll ever walk (I don't care as much about that, but it would be nice) or if she'll ever be able to read or interact with the people around her (which is our more important goal). It's frustrating not knowing, but we do what we can.

I've written before that I'm sad almost all the time, but I never let it cripple me. It's possible to be sad and be happy as well, and when I see Mia work hard or hear how well she's doing in school, it's a mixture of sadness and happiness, because I wish she weren't in the situation but I'm glad she's working hard. The accident is a huge turning point in the lives of all four of us (even Norah, who wasn't born yet), and as we move along through life, it becomes clear it hasn't had completely negative consequences. Of course, it would have been better had it never happened, but I can't pretend that some good didn't come from it, even if that good has very little effect on Mia, which is really all that should matter. I can't speak for Krys, but I think it's made me a better person, and it's definitely made me more aware of the problems of kids with special needs and what needs to be done for them. I can't say it's worth it, because I do wish I had no idea about kids with special needs (I'm still selfish that way), but I try to take some goodness from the accident and its aftermath. The best thing about Mia is that her personality from before the accident didn't change - she was a happy baby and she's grown into a happy kid. She gets frustrated and angry like every kid, but she doesn't understand her limitations and therefore she works hard at things even if it's probable she won't master them. She loves school, she loves people, and she loves getting out and seeing stuff. We want to show her everything even if she doesn't remember much, because she has such a grand time getting out and about. I took her to the San Diego Comic-Con last July for a day, and she had a great time moving around the packed floor of the con and saying hi to various people. I often get very sad looking at her and thinking of all the things she'll never do, but then she smiles and says "Hi, Daddy!" and I can't be sad, because she's alive and happy. Sometimes that's good enough.

Anyway, if you're interested in reading the previous anniversary posts, here are the links: 2005, 2006, 2007, 2008, and 2009. I always appreciate people reading about the kids, so I'd like to thank you for it. Maybe some day I'll have a video of Mia walking on her own! That would be keen.

(Yes, I just posted this yesterday, but this is the most recent picture I have of her. And look how cute she is!)

Off with her ... hair!

2010-04-17T18:07:00.006-07:00

Yes, Mia got a haircut today. We have been letting her hair grow for a few years, but we cannot any longer! When we originally cut her hair very short, it was because she was putting it in her mouth. So we cut it short and kept it short. Then we let it grow long in the hopes that she had grown up enough to keep it out of her mouth. Alas, it was not to be. She gets bored and pulls out her barettes and her pony tail, and then she puts her hair in her mouth. It's very frustrating. So today we got it chopped off. Behold!

Mia with long hair:

Mia with her fancy new hair cut:

So there's her brandy-new hair style. It's awful purty, ya reckon?

IEP time!

2010-04-16T15:31:00.002-07:00

On Thursday, 8 April (I'm a tad tardy), Mia had her IEP meeting (that's Individualized Education Program for you lucky people without Special Ed. kids). I mentioned recently that we were a bit worried about it, because her teacher seemed to be pushing for her to be moved to the Moderately Disabled class rather than the Mildly Disabled class she's in right now. You might argue that a kid with a traumatic brain injury is certainly NOT mildly disabled, and you'd be right, but she's probably not right for either class (she should be in the class she was in last year, but budget cuts ended that, so it's not an option), and we'd much rather she be in the class that is a higher level than a lower level. She's been doing well in school recently, so we hoped there wouldn't be too much dissent.

It turns out all was well. The school psychologist and the district TBI specialist wanted to get her classified as "multiply disabled" as well as TBI because TBI is such a broad category that they like to be a bit more focused, and she'd get more funding if she was in two categories (money concerns are, unfortunately, always present when you're dealing with public schools). It turns out she doesn't qualify for the Moderately Disabled class anyway, but even before that, I got the feeling that the teacher wasn't going to push it. I've been talking to the TBI specialist a lot recently, and she told me that the teacher has been working very hard to understand what's going on with Mia and how to deal with her. It doesn't hurt that Mia has been relatively healthy recently (yes, she's been having some surgery, but that's just discomfort - before the surgery, I think she was actually in pain quite often) and she's eating better, so the teacher can focus on her education more. Plus, Mia has gotten to know the teachers and kids better, so she's more into everything. Once that was settled, we simply went over Mia's goals for this year, tweaked them a bit for next year, and all was well!

We've never had a contentious IEP meeting, which is nice. Everyone knows what Mia needs, and it's just a matter of making sure everyone reads the document and agrees with it. The teacher was putting a lot of pressure on herself to make Mia reach her goals this year, and once the TBI specialist told her that wasn't really necessary (as we can, and do, simply tweak the goals a bit), she relaxed. She seems to put a great deal of pressure on herself in general with regard to the kids, so the fact that with Mia specifically (and probably Spec. Ed. kids in general, although I don't know for certain) she didn't need to reach every single goal made her happy. We'd love it if Mia reached her goals, and we were able to take a few off the IEP and add some new one (but not many), but what really matters is that she makes progress. If that means doing something 5 out of 10 times this year and 6 out of 10 times next year, so be it. You take the long view with brain injuries.

The next day I took Mia in after her horse therapy and spoke briefly to the teacher. I told her how much we appreciated all the hard work she's been doing with Mia. She really has worked hard to make sure Mia has moved forward, and anyone who goes into the class after not seeing Mia for a while is amazed by her progress. The teacher mentioned how difficult it is to adjust to teaching - she compared it to studying the Grand Canyon and then going to see it, which is an apt comparison, I think - and how she just wasn't sure how to get through to Mia. Mia is, I think, a bit more difficult to deal with than even other special needs kids, because she learns so very slowly and she really doesn't express herself very well - it's very hard to judge when she's angry or when she really gets something, for instance. The teacher also told me that she's still pinching the aides far too often, and I really think it's because they're not tough enough with her - you really have to get right in Mia's face and tell her, sternly if not angrily, that pinching is unacceptable. She'll get in eventually, but if you do it with a nice voice or half-heartedly, she'll just ignore you. The teacher speaks to her very sternly, and Mia doesn't pinch her. The teacher doesn't yell at her, but she's curt and keeps Mia focused on her when she's talking to her. The teacher told me she understands what I go through - Mia screams bloody murder when you make her work, and about 5-10% of it is actual discomfort or pain - the rest is whining. But when she's screeching so loudly, the tendency is to ease up on her and comfort her. I got over that a long time ago, and the teacher has finally moved past it too. She told me that many people at school have no idea what's going on with Mia, so they think the teacher is being cruel when she doesn't listen to Mia's whining. I've seen enough of the teacher's interactions with Mia to know that she doesn't do anything terrible, so I'm fine with the way she talks to Mia. I'll continue to keep an eye on her teacher, but I also told her that if anyone ever gets on her case about how she speaks to Mia, she should send them to me. If teachers don't give in to regular kids whining, why should they give in to Mia? The only difference is that regular kids whine using words, and Mia cries. If you spend any time with Mia, however, you quickly learn when she's crying "for real" and when it's just her trying to get out of doing something she doesn't want to do. She's a 7-year-old kid, after all - they all whine!

I'm very glad everything went well, and I hope that Mia's even better next year, when we hope her physical issues with her legs are far behind her (fingers crossed there!) and that she's eating more and has more energy. Also, the teacher and aides will have a year of experience with her, so some of the crap she pulls won't work as well then. Such is the theory, of course. But it was still a good meeting, and I'm more hopeful about her schooling than I have been for most of this year.

Norah's new school!

2010-04-06T12:35:00.004-07:00

A few weeks ago, we received a advertisement in the mail about a new school not too far from where we live. It's actually not a new school - the school buildings are actually built, but a different school is moving in. It's still going to be a Mesa Public School, but within the district, there's a subset of schools called Benjamin Franklin Schools, which are, apparently, a bit accelerated and a bit stricter than the regular schools. We decided to give it a look just for fun, and Krys was fairly impressed with what they had to offer (she went to the presentation, but I had to stay home with the kids). The curriculum is harder and they don't let the kids run wild, which is always nice to see. In order to register her, we had to go to the presentation and observe their classes for two (2) hours. Sheesh! So last week I went on a couple of days to watch both the kindergarten classes and some of the higher classes. That done, today we registered Ms. Norah. Should be fun!

The observation was interesting. I have no idea what they're teaching kids in kindergarten these days, so I wasn't sure how accelerated they really were. They were teaching kids about symmetry with shapes, which seems a bit tough, but other than that, I couldn't really tell if what they were learning was so much harder than what she would learn in a "regular" classroom. Similarly, I couldn't even tell if the fourth- and sixth-graders were doing so much more than in a regular class. However, they were very well behaved. The kids were quiet and did what the teacher told them when they were told to do it - there was a bit of fuss, as they're still five- and six-year-olds, but not too much - and they listened very attentively. The schools have a not-too-strict dress code (no shorts, everything below the knees, that sort of thing), which is also keen. They emphasize the basics, of course, but they also have a lot of artistic and poetry projects. It seems like a good place. The school also makes sure the parents are involved, too, which I have no problem with whatsoever.

We think it will be good for Norah, too. I have no idea how smart she is (as her father, I'm probably a bit biased), but I think she can handle the "accelerated" curriculum. She is also, we think, able to handle the more rigorous discipline in the school. She seems to have the personality to deal with it. She's not a wild kid by any means, so I don't think she "needs" a tougher structure, but it's never a bad idea. I asked her pre-school teachers how she's doing with the work in her class, and they said she's gotten very good at sitting and doing her tasks without being distracted. Good to know!

So we'll see how she does in this school. She's looking forward very much to going to kindergarten and is bummed that it's still four months away. We're optimistic about the new school, and we'll be happy to help out with whatever she needs!

Mia: Into and then out of the hospital!

2010-03-30T20:31:00.002-07:00

Mia, as you well know, had to go to the hospital over the weekend. Originally she was scheduled to go in on Saturday, but the doctor had to reschedule, so the procedure was done on Sunday. I had to take her in around 7 in the morning, and the doctor drained her wound and stitched her up by 10.30 or so. Then he came out and told me she had to stay overnight. The wound oozed a bit and he was concerned that it might be infected, so he decided to leave the tube in and make sure it drained completely. She only had to stay in for the night, but it was pretty annoying, mainly because the hospital is really, really boring. Krys brought me another book, which was nice, but Mia was watching the television all day, so that wasn't an option. Her doctor wanted to keep her hips apart, so she was lying in bed all day with pillows between her legs, which didn't make her happy. She got used to it, though, and dealt with it, because she's a trooper!

Her night was rough, mainly because she always has difficulty sleeping in the hospital, and of course, she still had the pillows between her legs. She slept okay although not great, but she stayed in good spirits even without a full night's sleep. In the morning, the doctor took the tube out and pronounced her good to go! I took her home, she hung out for the day, and today went back to school. All is well!

She has a follow-up appointment on Thursday, and we'll see what her wound actually looks like. I haven't seen it; the dressing hasn't come off yet, nor am I allowed to take it off. So I assume he's going to change it on Thursday, and give me further instructions. He wants to keep her legs separated as well, which is not going to happen. At night, we've put pillows between her legs, and during the day, she's sat on the floor a few times with her legs apart, but every minute just isn't feasible. She hates it, for one thing, and if we put pillows between her legs, she'd spend every moment trying to get them out. So we're doing what we can, but the best thing for her is to do lots of therapy. Her doctor says there are no restrictions on her, but we're going to take it easy for a bit - after all, we really don't want another hole opening in her leg! But keeping her limber will require therapy, and keeping her limber is all that the doctor really wants.

She's doing well, though, and she's happy. Isn't that what counts?

Mia experiences a setback!

2010-03-24T20:31:00.002-07:00

As I mentioned, two weeks ago Mia got her cast off. Life was good! She was nice and flexible, and she had a couple of very good days at school prior to Spring Break. Then, on Saturday (the 13th), I noticed that her incision was open. And when I say open, I don't mean a slight opening, I mean a fairly big hole. When I can see the tendons inside her leg, I consider that a fairly big hole. It didn't seem to bug her too much except when I actually moved her, which was nice, but I still wasn't sure what to do. I called the hospital and spoke to the on-call doctor (her surgeon was in Honduras). He said that I should soak some gauze in sterile water, pack the wound a bit, and then put a dry piece of gauze over it. I got distilled water because, as it turns out, one needs a prescription for sterile water. I got the distinct impression that the doctor and her surgeon's nurse (who called me later in the day) didn't quite believe that the hole was as big as I said it was. I've been dealing with Mia for almost seven years. I'd like to think I don't panic. This hole, however, was a bit freaky.

So we did that for a few days. We kept looking at it and it didn't seem to be infected, so we kept changing the gauze twice a day and hoping it would heal. I took her to her regular doctor a week ago just to make sure I was putting the gauze on correctly. He said I should call the hospital back and have someone look at it, because he didn't want the hole to get any deeper. The deeper it gets the greater the risk for infection, so he wanted to make sure they understood the issue. I called the hospital again and again got the idea they thought I was unnecessarily freaking out. But they made an appointment for the next day to check her out.

So I took her to the office and a physician's assistant looked at her (she was a very nice lady, but I must point out that her last name was - no lie - Stufflebeam). She was taken aback by the severity of it, which kind of confirmed my suspicions that they thought I was freaking out. She called Mia's surgeon's partner, who said to keep doing what we were doing, at least through the weekend until her surgeon came back and could look at it. It still wasn't infected, and Mia was handling it fine - even when we moved her, which is when it hurt the most, she wasn't screaming as much as I thought she would (or I would if I had a hole in the hinge between my leg and my groin). So we waited through the weekend.

I called the doctor on Monday and spoke to his nurse, who told me she'd ask him what he wanted to do. She called back yesterday and scheduled an appointment for today - he obviously wanted to check it out. Today he decided to be a bit more aggressive with it. He's going to drain it on Saturday and, if it's not infected inside the wound, stitch it back up. I was hoping he would do that, because we haven't been able to stretch her or do any therapy since the cast came off, and I fear that her muscles are going to start tightening up again. Simply letting the wound heal by putting gauze on it would take a long time, I imagine, and who knows how her muscles would be afterward. I'm sure she'll have to wait to do therapy if he stitches her up, but I'm sure it will be a shorter healing time than letting it heal by itself.

I hope it goes well on Saturday. I just get so frustrated with the fact that Mia just keeps coming close to being at full health and strength and then something else puts her back. It's been well over a year since she's had a full coterie of physical therapy, even though she's done some work. I hope this gets her healing faster. We shall see.

Mia's schooling concerns take center stage

2010-03-17T08:00:00.002-07:00

I've been meaning to write about this for a week, but it's here now! Last Monday (the 8th) we had Mia's Multidisciplinary Evaluation Team (MET) meeting, during which her various teachers and therapists discuss her eligibility for special education. As the school psychologist said, there's no way she's not going to be eligible for special ed., but every three years they have to go over it and figure out her placement. This is in anticipation of her Individualized Education Program (IEP) meeting, which will set her goals for the next year.

I thought it might be a bit acrimonious, but it turned out it wasn't. Her therapists agreed that it wouldn't be a good idea to subject her to standardized tests because she wouldn't understand them and wouldn't perform well at them, so they're going to keep track of her progress as they have throughout the year to come up with goals. This is what they do all the time, naturally, but because they need to evaluate her, it takes on a bit more importance this year. The Traumatic Brain Injury specialist for Mesa schools told us they're trying to get her classified as "multiply disabled" as well as TBI in order to get more funding. I'm not sure why she wasn't classified that way originally, but that's nice. So they're tracking her as usual, and won't worry about more formal testing.

It's the same with her teachers, but her main teacher brought up an interesting point. She said that she's been keeping stats on Mia all year, and one day she'll meet a goal, say, 8 times out of 10, and the next day she'll only get it twice out of 10. The TBI specialist and Krys and I all said at the same time that that's TBI kids, and one just has to deal with it. Mia does learn, but it takes her a long time and she usually experiences several setbacks while she's trying to get it into her long-term memory. If she's having a good day, she might do really well on a goal, but if she's having a bad day, she won't. We told her teacher to take an average, as she's tracking her stats each day. That will give her a better idea about her abilities.

Mia is doing fairly well with handwriting, as she works on that every day. We also learned that she knows the Pledge of Allegiance, with was kind of neat. She's working very hard, and the therapists and teachers all had nice things to say about her. We're still concerned about her pinching her teachers, but we're all working on that. The reason I thought there might be friction was because of where they have been talking about putting her - namely, the moderately disabled class instead of the mildly disabled class, where she is now. She really belongs in a class somewhere in between those two, but that no longer exists at Mesa schools, so we chose to put her in the mildly disabled class, which is too fast for her. The moderately disabled class, however, is too slow for her. So there's been talk about putting her in the moderately disabled class, which we oppose. I wasn't sure if that would come up at this meeting, and it didn't, so the meeting stayed friendly. I'm sure it will come up at the IEP meeting, so I hope that can remain civil. That would be nice.

Her IEP meeting is on the 8th of April, so that will be the next time we discuss her schooling. Should be fun!

Exciting news about Mia!

2010-03-10T20:19:00.002-07:00

I was going to write about Mia's meeting at school the other day (and still will), but I needed to interrupt because she got her cast off today! Yay!

She had a follow-up appointment with the doctor today. I asked him if we could get the cast off next week because it's Spring Break, but apparently he's indulging in some partying himself, because he's going on vacation. So he said, "Why don't we take it off right now?" I was a bit surprised, but I wasn't about to say no to that! So off it came!

She's a bit weak, which isn't surprising. He said her knees will probably hurt for a few days, and she's still having muscle spasms, which aren't pleasant. On the other hand, she had physical therapy today and her PT said that her legs were not tight at all, and her hip was rotating outward very well. Yippee!

So now we have to work her back into shape and hope that nothing else goes wrong. That would be nice. We'll see going forward.

Where on earth did Norah get this?

2010-03-09T11:56:00.004-07:00

Yesterday, while I was playing tennis on the Wii, Norah told me, "When you lose, you have to say 'Oh, snap!'" Both Krys and I said, "Excuse me?" I don't really have a problem with Norah saying "Oh, snap," even though she's about, what, a decade behind the times, but we have no idea where she picked that one up. School, we're sure, but which kid we don't know. But it's an example of strange things the kids will pick up at school. I know it will get worse, and I hope we can steer Norah away from some of the more objectionable things she will hear there.

We had a meeting with Mia's "team" of teachers yesterday, so I'll write something up about that in a day or two. Oh, snap, I guess that's a tease. Ha!

[Edit: I discovered that she got it from the Madagascar: Escape 2 Africa. At one point, Chris Rock says, "Oh, snap!" She never picked up on it before, which is why I had forgotten about it, but for some reason now she's picking up on it. I still want to ask if some kids at school say it, because according to some women Krys works with, saying "Oh, snap" is the hip thing about the young teen set.]

The big difference between girls and boys!

2010-03-07T12:20:00.002-07:00

Norah has a new swimming teacher and a new level, as she graduated a few weeks ago. She hasn't met her new teacher yet, but I made sure it was a woman. She had a man once, as a substitute, and she screamed the entire time and wouldn't get off the step by the side of the pool. I don't know what her problem is! So yesterday, we asked her what her problem with "boy" teachers is, and she replied:

"Boys are not awesome." Beat. "Girls are awesome."

So there you have it. The battle of the sexes, explained by a four-year-old. It's so easy when you just break it down a little!

More of Norah's smart-assery

2010-03-05T20:30:00.002-07:00

As Norah gets older, I expect her to be more and more of a smart-ass. As long as it's not excessive or snotty to the point where she doesn't do what I ask of her, I don't have too much of a problem with it. It's a fine line! This week, for instance, she came up to me and said, "Daddy, I just looked in the refrigerator." I asked what about that, and she said, "There's no milk in it." She meant there was no cup with her milk in it, so she couldn't drink any. I just looked at her and started laughing. Then I told her that perhaps she should ask for milk if she wanted some, and she did. So I didn't care that it was a bit smart-ass.

A few days later, while Mia's PT was here, Norah came over with one of her dolls and asked me to put its hair in ponytails. I told her that she needed to start learning how to do it herself. She said, "I can't do that, I'm only four." Mia's PT chuckled. That wasn't really smart-ass, but it was hilarious. I told her that it doesn't matter that she's four - she should give it a try!

She cracks me up. I know anyone who has kids knows how hilarious young children can be, and Norah cracks me up. Even when she's being a smart-ass!

It's time for a Mia update!

2010-03-01T19:31:00.002-07:00

One week later ... how's Mia doing, you might ask? I'm sure you think about her all the time, even though she's not your child!

Mia had a rough week, although she's getting better. She stayed home on Tuesday, Wednesday, and Thursday. It was extremely boring for her, as you might expect. She managed to take a long nap on Wednesday, but on Thursday she didn't appear tired and was much happier all day. We give her Valium for her muscle spasms and we have some pretty strong pain medication, but it seemed to be making her nauseous, so we have been trying to skip that and stick to Motrin, which seems to work. I wasn't going to send her back to school until today, but she was so good on Thursday that I really didn't see any reason why she couldn't go back on Friday.

So I took her in on Friday and spent some time there, just to make sure they were okay with her. They were worried that they wouldn't be able to get her through doorways (she could get through them, with only a little extra maneuvering) and how they were going to change her. As long as they have two people to change her, everything seems to be fine. They have to be careful moving her around and making sure none of the other kids bang into her, but so far that's been okay. They told me she was good in the morning but she wore down as the day went on, which isn't surprising. Mia gets worn out fairly easily, and given the fact that she's not eating very well (since the surgery, that is - we believe she's back to being peeved at us so she's not eating) and she's lugging around a heavy cast (well, not lugging, but it's still weighing her down), it's not surprising she was getting tired. I went by after school to check if she would fit on the bus, and that went well too. So her first day was fairly successful.

Her weekend was pretty boring, unfortunately. She can move around even less than she usually does, and we can't take her out anywhere (well, we could, but it would be a HUGE production), so she's pretty much stuck in front of the television. She'll play with some of her toys, but it seems like she's less patient with them now than she was before the surgery - I don't know if it's just the effort of pulling herself up to a sitting position or what, but she plays with her toys for a few minutes and then tells us she's all done. So the weekend went really slowly, as you can imagine.

Today she was back in school, and apparently everything went well again, and again she hit a wall in the afternoon. She slept in very late yesterday morning, and I think waking her up at 6.45 this morning was something she just didn't enjoy. That's about as late as I can wake her up, though, so she's just going to have to get used to it! She actually fell asleep on the bus ride home, which is a very rare event. We decided to put her to bed about 6.15, so we hope that helps keep her at least awake at school. The teacher didn't say she started acting poorly, just that she was sleepy. So maybe they can give her a break if she nods off. Her muscles are stretched way out and she's wearing a big heavy cast, after all!

She has a follow-up with the doctor next Wednesday, and I really hope he decides when she's getting it off. The following week is Spring Break, and I would love it if she could get the cast off then. We shall see. It's already been a long week, and I anticipate the next few weeks will also be trying. But hey! that's what being a parent is all about, isn't it? At least Krys and I don't have to sit around with our legs pulled apart and in heavy casts!

Hey! Mia had some surgery today!

2010-02-22T21:09:00.008-07:00

Yes, it's over. Today Mia had her surgery, and let's hope it helps her a lot. We'll see. We took her in this morning and sat around. They claimed she would get in a bit earlier than scheduled, but anyone who's ever been to a hospital knows that was a crock. She was scheduled for noon, but she didn't actually go in to the operating room until around one. That was okay, though - it wasn't a terribly long surgery, so she still didn't have to stay the night. I got some "before" pictures of her while we were waiting to go in. Look how happy and unsuspecting she is!

The surgery lasted about two hours. The surgeon told us that a good deal of that time was putting the cast on - the actual cutting and whatnot took about an hour. I've posted about what he was doing before, but I'll do it again - he cleared some scar tissue in her groin, did a bit of work on the hip capsule (which is the socket into which the thigh bone fits), and cut yet another tendon in her groin, which we hope will keep her adductor muscles from pulling her leg across midline and yanking her hip bone out again. We had a weird meeting last week with the doctor, at which he told us he was doing this to relieve her pain. When we got the X-rays done in January, he made it sound far worse than that, which is why we were freaking out a bit. I thought the surgery was to repair the structural damage in her hip, but apparently that wasn't all that bad. He was concerned about the pain she'd been having since November, and thought this would help. I'm glad she had the surgery, because she did need to fix the hip and get another tendon cut, but I guess we could have waited until April and it wouldn't have caused much more damage. I'm glad we didn't have to wait, though - it's always best to get surgery over with as soon as possible. I have my doubts about whether this will relieve her pain, though. Her pain, it seems, stems from her high muscle tone, and that's a brain problem. Until we deal with the pain at the source (and there are ways to do it, but she's a bit young and underweight to get into it now), she's always going to have some pain. I hope it can get down to "discomfort" level, but I have a feeling this surgery might alleviate some of the pain but definitely not all of it. She's already having muscle spasms because the tone is so high and she can't bend her legs. That's going to be the worst part about the next few weeks, I think - she has a prescription for Valium, but she can't take it on an empty stomach, and getting her to eat isn't fun at the best of times.

Anyway, she came out of the surgery and we went back to see her. She looked so cute sleeping that I had to take a picture:

We wanted to take her home right away, but we didn't want to force her to wake up. So we waited for a while. Krys left to get Norah at school and fill the prescriptions we needed. A few minutes after she left, Mia woke up ... not willingly, as a kid they had just brought into the recovery room threw up and started screaming. Mia woke up and looked over at the girl indignantly, as if to say, "Some of us are trying to sleep, here!" Well, as indignantly as she could look, as she was still extremely groggy. We hung out for a while until she was a bit more lively, and then I told her it was time to go! Yay!

There was, of course, a problem: her cast. The doctor told us last week that she wouldn't have a cast up to her waist, which was very good to hear. Her cast was only coming to the upper thighs, which meant we would be able to change her diaper without much distress. Even though we didn't have to worry about changing her, we still had to worry about how far apart her legs were. The surgeon cast her legs in a fairly extreme abducted position. How extreme? Luckily for everyone, I had a camera handy:

Yow, that doesn't look pleasant, does it? You see why her muscles are spasming, right? Sheesh, poor Mia. The big problem, as you can probably figure out, is moving her around. The cast is very heavy, for one. Plus, when I carry her, it helps to be able to get my arm under her knees, and it helps if her legs are together. That ain't happening here! So we had to get a good wheelchair for her. The one she's using right now is too narrow and doesn't have support for her legs if they're sticking out like they are in the cast. So we got a "standard" wheelchair - you know, the kind you think of when someone says "wheelchair" - and used that. It's wider than it needs to be - it's basically for an adult - so she kind of sinks into it, but at least it can accommodate the width of her legs. She fit in the car perfectly well, although I did have to take out the car seat and just put her on the regular seat. And moving her around the house is a bit of a pain, because the hallways are just barely wide enough for her to get through them. Nice.

So she's home, and she's not happy. She immediately started telling she wanted her cast off, which surely won't get annoying over the next 3-4 weeks, right? She did eat and drink a bit, so we were able to give her medicine, but after we put her to bed and she slept for a while, her muscles started twitching, which woke her up and made her cry. We don't know if the Valium will work - we certainly hope so! That's going to be the biggest problem, I think. The incision the surgeon made is tiny and, after a few days, shouldn't hurt at all. He didn't do enough work on the bone to cause her too much grief - she's allowed to sit up, for instance, which she wasn't allowed to do after her major hip surgery last year. But the high tone in her muscles causing them to spasm isn't going to stop for some time, and I hope the medicine helps until it subsides (if it does, that is).

She'll probably be out of school this week, and then the second week of March is Spring Break, so she doesn't have to deal with wearing the cast at school too much. We'll see how even going to school works with the cast - I really don't want to her to miss a second week next week, but who knows if she'll even be able to get through the door. I don't have a lot of confidence in her teachers and aides right now (a story for another day!), and this situation won't help. Oh well - we'll figure out what to do in a few days, when (we hope) her pain has lessened a bit.

Oh, surgery - how much fun it is!

Update on Mia's surgery date!

2010-02-14T19:06:00.002-07:00

Chalk this up to the squeaky wheel getting the grease: Mia's surgery date has been moved up. Good times!

I mentioned that her date was 14 April and I asked the nurse if it was possible we could move it up. I didn't hear from her for a few days, so I e-mailed the doctor. He's fairly good about getting back to me, so I figured I'd give that a try. He e-mailed back that they'd try to move the date up, and then his nurse called me back. She said they'd had a cancellation on 22 February and they could move Mia in there. I said that would be super. We'd like to get this over with as soon as possible, so moving it up two months was better than I'd hoped.

His nurse also told me she had spoken to the doctor before I e-mailed him and that he said waiting until April was fine. I would have been perfectly fine with that, but I'm a bit confused why she didn't call me back. I didn't feel bad about going over her head because I was worried about it and I thought if Mia got into surgery sooner, everything would be better in the long run. But I wouldn't have gone over her head if she had called me back. She's usually pretty good about getting back to me, so this was puzzling. But hey! it got the job done!

So Mia will be going under the knife in a week. This should speed the process up a bit. We can get her done and get her hips back in alignment and get her back into therapy. I just didn't want to wait for two months for this situation to get resolved. And now we don't have to!

The funniest words in the history of language!

2010-02-09T08:30:00.002-07:00

Norah, as any four-year-old does, finds some very odd things incredibly humorous. Recently, the words that crack her up more than anything are "underpants" and "peanut butter." I guess I can see why "underpants" would do it, although it's not quite as funny as she thinks it is, but why "peanut" and "butter"? I don't know. It's the mind of a four-year-old ... we don't try to apply logic to it.

This has persisted quite a while, too. I'm not sure when she's going to find something funnier, but I'm perfectly happy with those. At least they're not really terrible words.

It's been two weeks since I posted, and I apologize. I've been in a funk, mostly because I'm vexed by Mia's surgery news. It's now set for 14 April, which seems an awfully long time to wait. I asked the nurse if she could run that date by the doctor to make sure it was all right, and I haven't heard back from her. So I'm grumpy. But at least we can all laugh at "underpants," right?

Yay! More surgery for Mia!

2010-01-26T19:21:00.002-07:00

Yes, it's true. And no, I'm not happy about it. Oh well.

Last week I took Mia to her orthopedic surgeon to get her X-rayed. She has been crying a lot when we move her, and it seems like her muscles never get looser even though we stretch her a lot. Her PT was mystified, because it seems like a lot of it is her overreacting to movement (which she does a lot), but obviously something was making her uncomfortable. He didn't think it was a muscle tear or a muscle caught in a bone joint or anything like that, because then she'd be in pain all the time, and she's not. So we figured it was time to take her to the doctor so he could look at her hips.

Well, the news wasn't great, but at least we know what it is now. Her right adductor muscles on the inside of her legs, which are very high in tone, are still causing problems. During her initial surgery, the doctor cut one of the muscles, and when he removed the plates on her hips in July, he cut another one. The remaining ones, however, are still strong enough to pull her leg across midline, which happens quite often. They're pulling so strongly that they're pulling her right hip out of its socket. This is, not surprisingly, causing her some distress. There's also a good bit of scar tissue in her groin that he wants to get rid of. He has to cut (he and Mia's PT use "release," which sounds less horrible but is also less descriptive) a tendon in her groin, clean up the scar tissue, and fix some of the hip capsule, which is the bone at the socket where the leg bone fits in (I love that it's called a "capsule"). He claims that the surgery will be on an outpatient basis, which is nice, but that she'll have to wear a Petrie cast for 3-4 weeks afterward. A Petrie cast is a cast on both legs with a bar in between them, keeping them abducted - wide apart. This is, presumably, to allow the bone to lodge further in the socket. He said there was no reason she would have to skip school, but of course her therapy will be set back once again. Sigh.

It has to be done, of course, but it's still frustrating. Krys was a bit angry at the doctor because this happened, but I think she has realized it's misplaced. He did cut two tendons and couldn't predict that her muscle tone is so high that it would pull the bone out of the socket. I just hope that cutting a third tendon will alleviate the adduction, because if it doesn't, she'll have to go back to the doctor to get yet another one "released" before this can happen again. I just wish we had caught this sooner so all he'd have to do is that and not mess with the hip, but I guess we know better. She was due for a follow-up appointment in March, and I plan to take her in much sooner after he takes the cast off just to make sure everything looks fine. It didn't seem like her muscles were pulling the leg so violently across midline, which is why we didn't think of it. I just thought she had been out of action, therapy-wise, for so long that her quadriceps had become insanely tight. It's frustrating because we can't ask Mia what's wrong, and it still doesn't seem like her hip is hurting her all that much. I suppose it was the same situation before her initial surgery, because her hips were in worse shape and she was still able to walk and stand without pain. We can never tell with Mia, because she doesn't often tell us if something hurts.

So it's back to the hospital, another delay in her therapy, more annoying issues with her general care (exactly how does one go to the bathroom while wearing a Petrie cast, anyway?), and potential problems with her eating. The last time she had outpatient surgery, nothing much happened to her appetite, which was nice. However, she's making a lot of progress in that area, and I don't want anything to compromise it. We'll just have to cross our fingers.

We haven't scheduled the surgery yet, but I hope it's soon. We'll see. I wouldn't mind doing it in early March, when she's on spring break, because then at least she can stay home for a week and recover just a bit. I don't completely trust the people at school to take great care of her, and if we can keep her at home without her missing any actual school days for a while and figure out how to care for her, I'd like that. Of course, if she goes in for surgery before that and we think it would be better for her to skip some school, I don't have a problem with that, either.

Yes, the fun never ends with Mia! She's just lucky she's so adorable, or we might have sold her to some wandering Gypsies by now!

Mixed signals at Mia's parent-teacher conference!

2010-01-19T12:49:00.003-07:00

Last Friday Krys and I went to visit with Mia's teacher, the one we'll call Ms. First-Year, as it's relevant. It was the quarterly review, and we hoped that Mia's school issues had been worked out. Ms. First-Year had a great deal of praise for how Mia is doing right now in school. Mia has been working harder and enjoying herself more. Part of this is due to the fact that she's eating more, so she has more energy. She's also been feeling better (for the most part; we have an appointment with her orthopedic surgeon tomorrow to discuss something that's vexing us about her recovery) and is able to do more around the classroom. Ms. First-Year told us that she's doing fairly well with numbers, she does well on the computer, and last week she assisted on a spelling test by saying the words the other kids had to spell out loud (after some help from the teacher, of course). She is eating well, as I mentioned (she went to the gastroenterologist yesterday, weighed in at 39.5 pounds, and got kudos from the doctor), so that's not too big an issue anymore. She still pinches way too much, but it's rather odd - she doesn't pinch Ms. First-Year all that much, because Ms. First-Year is stern with her. The aides, I guess, are less stern with her, and also (apparently) a lot slower, because Mia pinches them. It's not that difficult to anticipate her pinching, so they must not be paying attention when she's in a "pinching" mood. We've been trying and trying to get her to stop pinching, but nothing seems to work. It's quite annoying.

So, all is well, right? Well, not quite. Ms. First-Year still seems quite flummoxed as to how to deal with Mia. As I wrote in November, she's still locked into this mindset of Mia keeping up with the rest of the class, even though that's not the point. The point is that Mia's IEP is the only barometer of her progress, and if they're working on the goals in the IEP and she's doing okay with those, that's what matters. Ms. First-Year still seems obsessed that Mia is the "lowest performer" in the class (she told us that directly, which might seem crass, but it's not like we don't know it) and that she has to devote so much individual attention to Mia. Well, first of all, she does has three aides in the class, so I'm not sure how much attention she's devoting to Mia (although if Mia doesn't pinch her but she pinches the aides, maybe she is devoting more time to Mia). But it gets back to the whole idea of a special education class - each kid has an IEP, so even if the other kids in the class are similar, they still have individual goals that they have to meet. Perhaps all their goals are similar so she can work on them all as a group, but that's just luck. Mia deserves an individualized education plan (in a perfect world, every child would get one), and if you can't handle that, perhaps you shouldn't be in special ed.

The option she brought up was moving Mia to the "moderately disabled" class. A few years ago, when Mia was first going to elementary school, we checked out both the moderately disabled class and the one she's in now. We decided that the moderately disabled class was beneath her skills while the one she's in now (I don't think it's technically called the "mildly disabled" class, but let's call it that) was above her. When the program at her former school was disbanded (much to our regret, as it worked perfectly for her), we decided that we'd rather put her in a class that was difficult for her than one that was too easy. Ms. First-Year made a big deal about how in the moderately disabled class she'd be one of the best students, but that's just not a big deal for us. I told her I'd call the Traumatic Brain Injury specialist who works for the Mesa School District and see about checking out the moderately disabled classroom, but I don't really think it's the thing for Mia. Krys and Mia's speech therapist don't think I should even check it out, but I told them that at Mia's IEP meeting at the end of the year, I don't want anyone to say, "Well, you didn't even take a look at it" and give themselves an out. I want to look at it, even though I doubt it will be a place I want to put Mia. I would much rather her be the lowest-performing kid in her class, because then she can look at the other kids and see what they're doing and try to model it. Last week her horse therapist put her in a "regular" wheelchair just to see what Mia would do. Mia immediately grabbed the wheel and began rolling it forward (it was in a narrow hallway and someone was steering without pushing forward, so she didn't go in a circle, as she would if she just used her right hand, which she did). Mia knew how to operate a wheelchair because she was in a class with kids in wheelchairs the past two years and she watched them. So why can't we have her in a class where the other kids are learning, and she can learn from them?

It gets back to my suspicions about the motives people do things. I've written about this before, but it's still pertinent. I wonder exactly why Ms. First-Year wants to put Mia in the other class. If she's selfish, it's because Mia is a lot more work than she anticipated and she just wants to get rid of her. I think that's part of it, because she does seem to be in over her head just a little, which is certainly normal for a first-year teacher (I know it was true for me). It's frustrating thinking that you can go into a class with a curriculum all set and then have all sorts of circumstances come up that thwarts you, but that's what teaching is. If Ms. First-Year doesn't figure that out soon, she's in for some trouble down the road. Another reason could be that she wants us, Mia's parents, to feel better. I don't know if parents desperately want their kids to be "top of the class" even if the class isn't anything special, but we're not like that. We want our kids to be in the best learning environment. If that means she's further behind the kids but the potential to learn is better, so be it. I don't think she's suggesting it for Mia's benefit, even if she might try to convince us it is. Mia is perfectly happy in the class, and she is definitely learning. Yes, it's incredibly slow, but that's the way it is with Mia. If she has to stay in that class for a few years, it won't bother her at all. And she'll learn what she needs to. Krys is of the opinion that the kids in the moderately disabled class are the ones who are "stuck" (for lack of a better word) at a certain developmental stage and will never progress. That's not true of Mia - even though her progress is very slow, she does progress. So I'm not sure why Ms. First-Year suggested it. I suspect it's because she just doesn't know what to do with Mia. Which is odd, because in the first part of the meeting, she was telling us what she's been doing with Mia, and it seems to work. I guess she just feels like dealing with Mia is taking away from dealing with the rest of the class, but she didn't say that. Nor should it be true, based on the fact that she has three aides.

So we're heartened by how well Mia is doing in school, and we're hoping she continues to do better. I'm probably going to go check out the other class, but I'm also going to let the TBI specialist that I don't think it's that great an idea. We'll see. I think Ms. First-Year is doing a fairly decent job, even though she has room for improvement. If she can realize that things are a tad bit different when you're the teacher and not the student, she should be fine. We'll see if she can step up. According to her, Mia has!

Mia's a big-time reader!

2010-01-11T15:46:00.002-07:00

Krys has been working with Mia to teach her to read, even though it's a hard slog. She memorizes books quickly enough, especially if she really likes them, but that's not the same as reading, is it? But Krys is still trying!

Recently she's been getting better at it. Last week Krys was reading The Golden Egg Book to her, and she was pausing to work through some words with her. Mia read, without help, the words "hill," "up," and "big." Krys tells her to sound out the letters and then put them together. Mia is getting very good at doing it herself. Because she RULES!!!!!

We'd really like her to be able to read, because that will help her in the real world quite a bit. I have no idea if she'll ever be able to walk on her own, but if she can read, she can do a lot more in life. That would be nice.

Sassy girl!

2010-01-08T13:40:00.004-07:00

I think it is a universal law that girls who are 10 and younger kind of have to be sassy and adorable. It's just how they roll!

Norah is, of course, no exception. Last night I mentioned that I had to take the Christmas tree down (which I did today!). She asked, "Why do you have to do that?" I told her that Christmas was two weeks ago, it's not coming around for a while, and the tree is taking up a lot of space. After that, she said, "Why are you telling me that?" What? You just asked me! Why I oughta ...

The funniest thing was the way she was standing when she retorted. I managed to get a picture in a re-enactment. This is, I promise, about two minutes after she said it, and she was standing exactly like this:

I kid you not, she was standing with arms akimbo, wearing an apron. She got the apron for Christmas and now she loves to wear it while she helps me make dinner. Because she's awesome.

I also forgot to post a couple of pictures from a few weeks ago. She and Mia were watching television one evening (it was a Friday and Krys was working somewhat late) and ... Norah fell asleep on the floor in front of the television:

Maybe being sassy so much just plumb wore her out!

Here, for your consideration, many videos of the girls (and the parents of the girls) at Christmas

2010-01-02T16:15:00.005-07:00

Yes, I've been neglectful. Last weekend was busy, and then this week I was home with the children all by myself, which took up a bit of my time. I still could have done this, but I kept forgetting. Just be glad I didn't write about the week before Christmas, when all three women in the house decided to be sick! (Though not at the same time, which made it a bit easier.) But now I have some time (it takes forever for these to upload to YouTube), so here are the kids opening their Christmas presents! Just ignore the fat man who shows up in one of them. He's a tool!

I know it's a lot. Sorry, but that's the way the computer splits them up. You can pick and choose, though!

I hope everyone had a great Christmas and New Year or whatever else you might celebrate. The kids are back at school, and I'm happy. Man, they're a handful when they're home for so many days in a row! Phew!

Hey, it's Christmas!

2009-12-25T15:59:00.002-07:00

We hope yours was groovy!

As promised ... VIDEOS!

2009-12-18T14:47:00.003-07:00

As this week is the end of things in the school/kid-related arenas, Norah and Mia had things going on. Mia sang in a choir on Monday, but for some reason we weren't informed about it and so we missed it (we're a bit peeved about that, you can be sure). Then, on Tuesday, Norah had her dance recital for Little Gym. I've posted videos of her dancing in her recital before, and this is more of the same. She's very funny, because she knows what to do but seems like she doesn't want to stand out, so she looks around to see what the other kids are doing. I wanted to yell, "Come on, Norah, you know what to do!" Then she went into the gym and played on the various gymnastics props, so I filmed some of that. On Wednesday she had a little choral presentation at her pre-school. She did the motions in the first half of the first song and then quit. But she did sing throughout, which some kids did not do. Her best friend stood in the back row and looked grumpy through the entire "concert" (you can see him, very briefly, in one of the videos). Then on Wednesday night, we went out to Mia's horse therapist's place for a Christmas party. There was a band singing Christmas songs, so I videotaped them dancing along to the music. They both had a grand old time even though we forgot jackets and it got mighty chilly out there in the desert!

I hope you enjoy these, even though they're not very exciting. That's just the way it is with kids, isn't it? But they sure are cute!

I promise, soon there will be videos, but for now, it's another quote (threat) from Norah!

2009-12-17T16:03:00.002-07:00

This week was presentation week for Norah (in school and at Little Gym), so soon there will be plenty of video up here, so swear I! However, when Norah came home from school today, she said, "May I have some peanuts so I don't whine anymore."

This confused me, as she hadn't actually been whining. But you can believe I hurried up and fetched her some peanuts! She might have started at any moment!

Sorry, but it's even more stuff that Norah says!

2009-12-14T16:59:00.002-07:00

I just can't shut her up! Today, while we were driving home from her school, she noted Mia's red shirt, on which was written "Santa's Favorite." I told Norah what it said, and she nodded. Then she said, "She was born for that shirt."

What she meant, I believe, is that it's Mia's shirt and not Norah's because it's too big. I think that because she immediately said something about getting that kind of shirt when she's a bigger girl. She has no idea about time, so she always says things in the past tense - "When I was a bigger girl, I would wear that" - that sort of thing. So that's what I think she meant.

But I prefer to think of her believing that Mia was so perfectly suited for the shirt that she was, indeed, born for it.

Yes, it's more stuff that Norah says!

2009-12-10T20:56:00.003-07:00

Krys took Norah out to look at Christmas lights last night. Near where we live an entire street decorates the heck out of their houses, so Krys took Younger Child over there. While they were strolling around, Norah said, "This is a classy neighborhood." Yes, she cares about those things.

Tonight while I was making dinner, she wandered in with a bowl and some of her fake food in it. She said, "I made dinner for my elegant self." That totally cracked me up. She's so very elegant!

I need to start wearing a wire ...

2009-12-09T08:47:00.002-07:00

I'm sure people who see kids often know they say the darndest things. I keep meaning to write more of what Norah says, because she cracks us up. Apparently last night, for some reason she got into a discussion with my lovely wife and Spanish came up somehow. Yesterday Norah heard someone speaking Spanish on the radio and she correctly identified it as such. I was fairly impressed. Then last night she was chatting with Krys and she said, "Chris speaks Spanish because he's black." Chris is a kid at her school. We're not sure why she said that, but we believe it's because Dora the Explorer is brown and that's why Norah knows what Spanish sounds like. Krys told her that she, Norah, also knows some Spanish. Norah didn't quite know what to make of that.

Thanksgiving at the Burgas house!

2009-12-03T08:19:00.009-07:00

Yes, I've been away. Last week my parents were in town, and my mom must always be doing something! No rest for the wicked! We went to Tucson for a few days and checked things out, and then my mom and lovely wife went off and shopped for a few days over the weekend. Krys always claims she doesn't like the crush of holiday shopping, yet she always manages to go out the weekend after Thanksgiving. Hmmmm ...

Anyway, I thought I'd post some photographs of the week. Enjoy!

Here's Norah at the Pima Air and Space Museum. You're allowed to sit in some of the planes, fret not!

Here I am with the two kids under one of those weird helicopters that carry stuff. Whatever they're called.

Right outside our room, we had a rough spot of desert in between us and the gold course. The first night, a whole grip of javelinas wandered by. They're kind of neat, but they stink. I mean, as bad as skunks. Pee-yew, as Norah would say.

This is a statue of Pancho Villa. In downtown Tucson. Why is a statue of Pancho Villa, whose claim to fame (in the United States, at least) is that he invaded New Mexico and killed American citizens, standing in a plaza in the middle of downtown Tucson? Only Tucsonians know for sure!

Here we are at Thanksgiving dinner. Look at those cute kids!

We had a nice time, and the kids enjoyed seeing their grandparents (even if Norah was a bit scared of Granddad). It's always too bad that they don't see the kids more often, but that's what happens when you're 2000 miles away. Que sera sera and all that. But we'll see them again soon! We don't know when, but it will be soon!

A schism develops in the Burgas household!

2009-11-18T19:11:00.004-07:00

Yes, it's true. A few days ago, Norah created a Thanksgiving tree at school. She drew and colored a trunk and then affixed two hands to the top. The teachers asked her what she was thankful for and then wrote it on the hands. Here it is, in all its glory:

Notice anyone missing? That's right, she's not thankful for Mommy! The funny thing was, Krys joked with Norah that she was very sad, and of course, being four, Norah took it very seriously and almost cried. She then petted Krys's leg and told her how much she loved her. Crisis averted!

I just love how her toys, of course, take precedent over everything, including Daddy. Norah has her priorities straight!

(By the way, do you like her name on the right side of the tree? That's how she writes it currently. We're trying to change it, but she stubbornly resists our instructions. But she knows how to spell it!)

The other day I asked Norah to do something and I got a rather cheery "Yes, sir!"

2009-11-11T08:10:00.002-07:00

I don't know where that came from. I asked her to take something back to her room, and she did it immediately, but I'm just not sure where she got the "sir" part from. I mean, I call most men I know "sir" if I don't call them by their names (I refuse to call people "dude"), but I don't say it around Norah, because she's not, you know, a dude. She must have heard it somewhere.

It's certainly better than the "whatever" she threw at Krys over the weekend. Boy, was that a mistake. We assumed she picked that up at school, because I don't think I've heard it on the television shows she watches. Krys was extremely unhappy with her over that. I'll take the "Yes, sir!" any day.

School issues with Mia

2009-11-09T15:42:00.002-07:00

A few weeks ago Krys went to Mia's first parent-teacher conference (I was sick that week, so I was lying on the couch trying not to die). Her teacher told her the usual stuff, and we all moved on. Then, last week, her teacher sent a note home that told of Mia's poor behavior, from pushing things away from her when she doesn't want to learn to problems when they try to get her to do physical stuff. Her teacher was most concerned about her falling behind the other kids, which she's starting to do severely. They have been working hard to get her to eat, and she's doing fairly well in that regard (I haven't weighed her recently, but I have to think she's gained something, as she's eating decently at home too), but now they're trying to get her up to speed academically, and she's just not keeping up. This does not come as news to us - Mia is very slow to learn anything. She has a good long-term memory, but getting stuff into her long-term memory is a serious chore. I was more concerned with the behavioral stuff.

I spoke to her teacher, who invited me to observe one day to see what they were doing with her. I went last Friday to check it out, but it wasn't really an observation, because we were discussing with her physical therapist and occupational therapist what to do with her in the classroom. I told the teacher I think part of the problem is that she's feeling much better, both because her hip is finally healed enough (she was back on her horse this past week, which is nice) and because she's eating more, thus she has more strength. This, I think, leads to a bit of boredom on her part, and I'm not sure if the teachers are doing enough to move her around, because she needs to move around a bit! So when I went into her class, I showed them a bit of what they can do with her. Her home PT is going to visit the class next week to help them out a bit more with that. As usual with Mia, they are worried that they're hurting her when they move her, because she whines so much. Mia is quite smart, and she knows that she can manipulate people into feeling sorry for her. She also anticipates movement hurting more than it does, so she starts whining almost before you touch her. I've grown immune to it, but people who don't know her that well - like her teachers - think she's in immense pain, so they don't challenge her. I told them that they need to warn her when they're moving her and that it's not going to hurt, and if she cries, they start what they're doing all over again, so she doesn't get away with it. I also told them that she can, with minimal help, sit up when she falls over, so instead of just lifting her up, they should try to help her sit up on her own. Mia tires so easily that she's become a bit lazy, and everyone needs to make her work harder to get what she wants. They, of course, are terrified of causing her some real damage and any subsequent lawsuit which would stem from that, and I understand that, but it doesn't mean they shouldn't make her do some work!

As for the academic problems, it's a bit more vexing. For the last two years, Mia has been in a class with several different grade levels, so the teachers worked with her very individually and didn't worry about where she was in relation to other kids. Now she's in a class with all second-graders, and while they're special education kids, they are more advanced than Mia is. It's not a big class, and they have at least three teachers (the head teacher and two aides) in there (there's another aide, but I'm not sure if he's full-time), so giving Mia individual attention isn't a problem. I'm not sure why the teacher is so worried about her falling behind the other kids, because each special needs kid has an IEP (Individualized Education Program, in case you're new around here) and by law, they need to tailor a curriculum for her. So what the other kids are doing shouldn't matter. Her teacher got in touch with her teacher from last year, who gave her some tips about how to deal with Mia (lots of short breaks, because her attention span is so short), and I hope that helps, but I'm not sure why I care where Mia is in relation to the other kids. I assume her teacher is worried because she might have to be "held back," but I think everyone knew she would never work at her grade level. It's very frustrating, because I think they don't want to move her to third grade because she won't be ready for it, but they don't want to keep her second grade because she'll be too old. This is why I was so happy with her previous school - they worked at her speed, and we'd decide once she reached sixth grade age if she was ready to move on to junior high. The discrete elementary grades didn't matter all that much.

So what to do? Well, her teacher is going to wait until the end of the quarter and assess her. I have to call the Special Ed. coordinator, who checks in on Mia, and a teacher who comes into the classroom to assist with her specifically, and see what they think. Her teacher suggested a "moderately disabled" class for Mia, but I'd have to check that out, because the moderately disabled class next to hers last year was full of kids who were barely verbal. Mia would have been the most advanced kid in there, and I don't want her to be the most advanced kid in a class - I'd rather her be in a class like the one she's in now, because then she can have role models to whom she can aspire. Unfortunately, that's not looking so good right now.

I hope her teachers can get it figured out. I have a feeling that if they move her around more, she'll calm down a bit and maybe focus more. If she doesn't, we have options. We thought about moving her to a different school district with better special education facilities, and that's still an option. We're just frustrated because Mia was in such a good place the last two years and the school district "couldn't afford" it anymore. So now she's in a bit of a limbo situation. We get that it's a challenge educating her. You know what? Don't get into special education if you don't want a challenge!

"Underpants!"

2009-10-27T20:00:00.002-07:00

Tonight Krys was reading a Fancy Nancy book to Norah. At one point Nancy didn't want to go on the jungle gym because she was wearing a fancy nightgown and if she hung upside down, everyone would see her underpants. Norah totally cracked up when Krys said "underpants." She laughed pretty much uncontrollably, and at one point said, in between chuckles, "I can't stop laughing!" She kept wanting Krys to read the passage again so she could laugh again. She kept saying "Underpants!" and giggling. She is, of course, adorable when she laughs. She finally calmed down, but it's good to know that something innocuous like underpants can make her so very happy.