The Daughter Chronicles

Wednesday, August 30, 2006

She says it's her birthday ... nananananananana!

Yes, today Mia turns four. Four big years! Jeez, it's hard to remember a time when she wasn't a part of our lives, but it really hasn't been that long. In honor of her birthday, today's post will be about her birthday party, which we had this past Sunday.

It was a fun party. More people came to it than showed up at Norah's party, but that's just because Mia has been around longer! Two of my ex-students showed up, one with her husband, and three of my ex-co-workers, two of whom are married to each other, and the other with her husband and two children, one of whom is a month younger than Mia and the other of whom will turn two in December. Now that's a sentence! It was nice to see everyone - the only one we see with any regularity is Rachel, one of my ex-students, and that's because she babysits for us (and has now gone back to school in Canada, so we're stuck in the house until Christmas - damn you, Rachel!). I miss seeing friends, but they all live far, far away on the other side of the Basin, so it's difficult to get out and about to see them. Parties are good excuses to catch up!

Mia and Norah were both very well behaved, as they usually are. Krys bought two cakes for some reason known only to her - and believe me, I'm not about to plumb the depths of the female mind that much! She got a chocolate cake with chocolate icing and a sheet cake with vanilla (well, white - I suppose it's vanilla) and chocolate layers. She said something about wanting a completely chocolate cake for Mia, but Mia isn't really all that into cake anyway and getting two seemed like overkill. But again, I don't dare question the decision-making of the wife!

People started showing up around noon, and Mia, of course, was happy that all these people were paying attention to her. Norah clung to Mommy for quite some time, but she loosened up as the day progressed. People ate, Krys lit candles on Mia's cake, and they both blew them out. I doubt if Mia had much to do with that, but I think she blew a little. She wasn't into the cake very much at that point - her aversion to trying new things extends to a certain degree to sweet stuff, even though she loves it. Norah chowed down on it, of course, because she's Norah. Then it was time to open presents.

Krys felt bad because she really didn't get Mia a lot this year. I pointed out that she has a lot, and other people got her presents, and Mia doesn't really care, but she still felt bad. She got her DVDs of two of her favorite books - Click, Clack, Moo Cows That Type and Chicka Chicka 1-2-3 - plus the sequel to Click, Clack, Moo (because the first book was so successful) and a Grover doll. Mia digs The Monster at the End of this Book, so we figured she'd like Grover. She got some clothes, which were greatly appreciated, and some foam puzzles. Which Norah likes to chew on. Of course.

Then it was time to take a nap. She was flagging, we could see, so we put her down and most of the guests left. Two of our friends, Michelle and Kevin, stayed for a while so we could chat. We hadn't seen them in months, and I miss talking to them face to face (Michelle and I communicate via our blogs, which isn't the same). Norah eventually went down for a nap, but not before she decided that Michelle was way cool. She did the same thing with Michelle that she does with Krys and me - brought books to her and then sat on her lap and pointed at each page saying "Dat?" Norah is slowly getting over her fear of strangers, which is nice. She loves Rachel and was starting to dig Mia's physical therapist's student (before said student moved on to other things). It was very cute to see her hanging out with Michelle.

When Mia woke up, she had some cake and decided that she liked it. Mia hasn't quite gotten it through her head yet that when we give her new things to eat we're not trying to poison her. She ate some cake and thought it was groovy. Yay, Mia!

Another impressive thing she has done over the past few days is tell us her age. On Sunday we counted up to four with her, but later we just asked her old she was, and she said, "Four!" Her success with this question has been intermittent over the past few days, but she said it again tonight, so we're hoping she's starting to grasp the concept of numbers. That would be nice.

Considering that we weren't sure if she'd make it to her first birthday, every birthday she has is a good one. We had a nice party and Mia enjoyed herself very much. She is still doing well on the mental side of her therapy, which is, for us, the more important side. Physically, she works hard, but let's face it - there is quite a bit they can do for someone who can't walk. But for someone who can't reason, there are significantly fewer options. So although we're frustrated by her slowed progress, we're very happy she's doing so well mentally.

So for the next year, she's the most beautiful four-year-old on the planet. You must deal with it!

Tuesday, August 29, 2006

Picking your battles

Every parent deals with this. You have to pick your battles, right? If you try to fight the children at every turn, you will go insane even more quickly than you already are trying to raise two children! So you allow them to slide on some things, because they're just not worth fighting over it.

One such battle is Norah's desire to wander around the house with her blanket. She loves her blanket, possibly more than she loves Mommy and Daddy combined. For a while, I tried to convince Krys that she shouldn't wander around the house with her blanket. It was in her crib, she sleeps with it, and I felt that when she wandered around the house with it, she was made artificially happy and wouldn't sleep because she never got cranky enough. When I didn't allow her to carry her blanket, she would eventually get grumpy and then I would know it was time to nap. On the weekend, Krys would let her carry it around, and she often didn't get grumpy. How can we tell it's nap time if the chick never cried????

I have given that up, however. Let her wander the halls clutching her blanket! It started because Mia was getting so upset when her physical therapist showed up. She was getting so upset that Norah would start crying, and the only things that were making her happy were her sucky or her blanket. And just like allowing gays to marry will lead to breaking up my marriage and me marrying a kumquat, it was a slippery slope from there! Now I just don't care. I don't automatically go for it, but I'm a lot more comfortable with her zipping around with her blanket. She loves it so!

I figure she'll either grow out of it or she'll become a wise-beyond-her-years comic strip icon. Either way, it's all good.

Friday, August 25, 2006

"The Death of a Thousand Cuts!"

Or, "The Chinese Water Torture!"

Or, "Pulling Teeth!"

Yes, it's drinking with Mia! I have mentioned our issues with getting Mia to drink before, and I figured I would update the situation. She's doing better, but it's still like ... well, you get the idea.

I may have mentioned that we are putting polyethylene glycol in her juice. A while ago, when she was have big trouble pooping, we went to the doctor and he prescribed it. It has helped - she is pooping at least three or four times a week. It's not as great as it should be, but she is doing much better with it. Occasionally she'll even poop two days in a row! Holy cow!

She still doesn't use the toilet. Confound her!

So, to drinking. We give her around five (5) ounces of juice - Gatorade, these days. We mix in the laxative and then get going. She digs the curly straw, and will drink pretty well with it. The photo shows about how much we give her. You would think that would be pretty easy to get through, right? Well, I filled that cup on Tuesday morning. She had her first sip from it at lunch on Tuesday. Today is Friday, and she finished the cup this morning. Sheesh. We give her stuff to drink at every meal and snack. So she drank at three lunches, three snacks, three breakfasts, and three dinners. I will add a corollary: we also give her milk at some meals, but we usually go back and forth between the milk and juice - she doesn't skip one. So she drank five ounces in three days. Do you see why we're concerned?

She does seem to be doing fine with it, however. She gets milk in her cereal in the morning, and her fruit and vegetables have water in them. It just gets annoying. I have to tell her before every sip to take a drink, and she takes a tiny little sip and then signals that she's all done. And then the ritual begins again. It is hard to start her drinking, but she does okay once she tastes it. We called the neurologist and asked if she might not feel thirst and hunger too well, and he said it was a possibility, but there's no way to tell. So we'll just keep plugging along.

She seems to enjoy drinking. Why won't she do it better and more often? Oh, the twisted mind of the four-year-old!

Sunday, August 20, 2006

As usual, good news/bad news with Mia

The good news is that Mia is off her Tegretol. As I mentioned, we've been slowly lowering her dosage, and this past Friday was her last day on it. She hasn't had any more seizures, which is a good thing, and we're going to keep an eye on her for the next few months as the drugs that were in her system get out. She's still on her other two drugs, so I don't foresee a problem.

However, we're a bit concerned about one of the other drugs she is one, Keppra. One of its side effects is nervousness, and Mia has been a wee bit weird recently. Not enough to make us too upset, but still, enough to make us wonder if the Keppra is making her act up a bit. Maybe the Tegretol was dampening the effects of the Keppra. We'll see. She's been a bit more touchy recently emotionally. If I get the tiniest bit stern with her, she starts crying. And a few times, I haven't even gotten stern with her. Today I sat down during lunch, held her cup up for her, and asked her to take a drink. She started crying, and when she cries, she wails, and we just have to leave her alone until she calms down. When I give her medicine at lunch, she starts to get upset as well, and she has started dribbling it out of her mouth to the point where I have begun giving it to her when she's lying in bed. At breakfast she's fine, but at lunch she's a mess, and I don't know why. So we're keeping an eye on that, because we may have to call her doctor and see what's going on.

It's a minor thing, because her personality hasn't changed completely and the "side effect," if that is indeed what it is, is minor - so far. She just seems more jumpy, and that's no good. As usual with Mia, anything good is tempered by something not as good. We hope she's just being weird. Maybe school will help.

Tuesday, August 15, 2006

News and notes about the two demon children

Item! Mia started school yesterday, and it was much like last year: the instant she saw all the people, she didn't know me. "Daddy Who?" is her mantra. There are far too many other people to worship her, after all! Her teachers were very happy to see her (they did see her at Open House last week, but this was different) and she had a grand day, apparently, much like she always does. As I mentioned here, we're hoping that being around the kids will make her more willing to work in her gait trainer. Her PT returns tomorrow, so we'll see how that goes. We're also hoping that her continued improvement with language gets a boost from being back at school. She can count the students now, after all. Who doesn't like to count the students?

Item! Norah is slowly working her way toward full mobility. Yesterday afternoon I was sitting with Mia in my lap on the chair and Norah was playing on the floor. She enjoys emptying the toy box, throwing the toys everywhere, but not actually playing with any of them. She had done this quite a bit in the morning, so when she started doing it again in the afternoon, I pointed out to her that she had quite a few toys scattered around and perhaps she should play with those. She took a Lego™ piece out and stood calmly for a few seconds gnawing on it. She was in the middle of the floor with no means of support, and she very slowly took about 4 steps sideways toward me. Usually, when she takes steps, it's because we're sitting on the floor and we put her a few steps away from us and she takes a few steps and then crashes into our arms. But yesterday I wasn't anywhere near her and she was trying to walk and stay erect without crashing into my arms - because, you know, I wasn't anywhere near her. After her fourth step she shuffled a bit and then sat down, but it was very cool to see her doing it in space, completely on her own. We tell her it's much more fun to cause mischief with both hands instead of always using on to support herself against the cabinets, but she hasn't figured that out yet. If the possibility of two-handed terror isn't enough to motivate her, what is????

Item! We got professional pictures taken on Saturday for their birthdays, since Norah's wasn't too long ago and Mia's is coming up. They haven't gotten photos taken since Christmas, and that was with the whole family. I figured Sears wouldn't mind if I stole the pictures and posted them here, would they?

Here's a nice close-up of Mia. Norah would not let us take her close-up. In fact, it was hard keeping her from crying the whole time because she couldn't cling to Mommy throughout the session.

Here's one shot of them together. It took forever to get it, because of the aforementioned crying one-year-old.

Here's Mia alone. We liked this one better than the other one of this pose even though she's a wee bit tilty in this one. Her smile is nicer in this one, and she looks a bit more relaxed.

We had a couple of different poses for this, too. Mia looked better in the other one, but Norah looked worse in that one than Mia does in this one. Mia looks fine, she's just not looking directly at the camera. In the other one, Mia looked right at the camera and had a great smile, but Norah looked truly miserable.

Norah got a lot happier once Mia and Daddy left the room and she could stare longingly at Mommy.

We decided to get an "official" one-year-old photo since Krys never got around to scheduling a session when she turned one. Yes, I blame my wife. She's in charge of those sorts of things, because I would just take pictures with my own camera!

So there are the latest photos of our children. You cannot deny they are the cutest in the world!!!!

Wednesday, August 09, 2006

Idiot-proofing the children

First, because some people had the audacity to doubt if the kids were still as cute as I claim, I give you two pictures:

Bow down before the cuteness!

I also have some pictures of Norah walking with her little walker toy. Yes, they're pictures, so you can't see actual motion, but you'll just have to imagine her steps. Soon I will figure out how to load videos onto the Internet, and then look out!

The real point of this post, however, is about keeping the children safe. It's a fine line parents walk between letting kids discover how to stay out of trouble themselves and keeping them safe by taking them out of danger. We haven't had to do much with Mia because of her condition. She doesn't get into a lot of trouble, so therefore we haven't had to decide when she needs to learn things herself. We imagine that as she gets more mobile (and whether she will progress or not in the gait trainer is still up for debate), we'll have to worry about that, but for now, it's just Norah getting into things. When do you step in?

One thing she likes to do is pick things, usually utensils, out of the dishwasher. Whenever I open the dishwasher she comes a-runnin' (which is a figure of speech, since she comes a-crawlin' right now). She thinks the dishwasher is one of those magical adult places that kids don't have easy access to so it must be the coolest place ever! I usually ignore her because she generally just stares into the dishwasher in awe. But then she starts pulling out utensils. I just pluck them from her grasp and put them on the counter top without worrying too much about it. She usually goes straight for Mia's spoons, which are red and plastic and too groovy to resist, apparently. Then, a few days ago, I looked down and saw Norah holding ... a steak knife. Yikes. By the blade. Double yikes. I very carefully took it from her and told her to go away. She whined and crawled away, insulted. She's very quick, and if I turn away to put a glass in the cupboard, she could easily grab a knife and do some damage. This is a danger I know I have to remove from her reach and not let her figure out on her own, but I hope I'm fast enough. Darned kids are speedy!

The other thing she did recently is far less serious, and something I'm sure I can let her figure out by herself. A few days ago she was playing on the floor near Mia's gait trainer, which Norah considers something of a jungle gym. She looked fine, but suddenly she started crying quite desperately. I looked over at her and could see no reason why she was crying so much. It was in the early afternoon, so I thought she might be tired. I asked her a couple of times what was wrong, and finally got up and walked over to her. Mia's gait trainer has a couple of metal rods running along the plastic tubes on which the wheels are attached. These rods are for the straps that go around her ankles. Attached to these rods are spiral wires that can be adjusted to keep the straps within certain limits. The wires are twisted into two circles that jut down from the spirals around the rods, and you push the two circles together to adjust the spirals. Norah had, you guessed it, stuck her thumb into one of the circles and couldn't get it out. This vexed her. I was a bit worried because I initially couldn't get her thumb out and I didn't want to push too hard. Finally I got her thumb out and she immediately stopped crying. Then (and if you're a parent you know what's coming) she stuck her thumb immediately back into the circle. And started crying again. I tried to explain to her how idiotic that was, but she was having none of it. Knowing it wasn't all that bad, I naturally took a picture before freeing her:

I know they'll learn cause and effect soon enough (Norah still hasn't figured it out with regards to the cat), but it's frustrating watching them not comprehend it quite yet. This is one of the hard decisions of parenting: when is it okay to let them make their own mistakes and learn from them, and when do you have to step in because they might really hurt themselves? It's an ongoing process, to be sure.

Friday, August 04, 2006

Shooting up with the botox

Mia got botox injections yesterday. "What?" you shout. "She's not even four years old! Why are you trying to make her so vain?!?" Of course, she didn't get botox injections in her face to freeze her muscles so she doesn't have wrinkles. She got them in her calves and her left arm to loosen her up. Read more about it here. We have been discussing botox with her neurosurgeon for a while, and he finally decided she was ready for it. So yesterday we were off to Phoenix Children's Hospital for the procedure!

Her surgery was scheduled for 8 o'clock, but I got there at ten to eight and had to fill out all the paperwork, so we didn't go back into the operating area until about 20 after. Her doctor came in and checked her out, making sure of her weight (she had been weighed at her pediatrician's office - a story for another day - the day before and came in at 32 pounds, 14 ounces) and making sure all her vital signs were fine. At about 8.45 they took her into the operating room. The anesthesiologist came in and asked if she had any adverse reaction to anesthesia. I was about to tell him to ask the neurosurgeon, who had put her shunt in three years ago, which was the last time she had been knocked out, when the anesthesiologist looked at her file and said, "I worked on her three years ago, when she had her shunt put in." We told him that he would then be a better judge of how she does under the gas. We left them alone and sat in the waiting room. They had told us that it would be thirty to forty-five minutes for the shots, but after about twenty, they came out and told us she was all done. Her neurosurgeon said she was fine, and a few minutes later, we went back to see her. She was already awake, and after a few minutes of spaciness, she shook off the effects of the gas and was wide awake! They also told us she might need an hour or two to recover, but after fifteen minutes she was ready to go. So we got home a little after ten, even though I thought we wouldn't be home by noon.

The neurosurgeon told us it would take 5-7 days to see any effect, and the looseness would peak after a month. The shots last anywhere from 3 to 6 six months, so we're hoping that in that time she can make a lot of progress, especially in the physical therapy arena (see the previous post for our troubles with that) and by the time the botox wears off she'll know more of how to balance herself and use her left side, so that she doesn't revert to her state now. We could, I suppose, get more shots, but just like medication, we don't really want to go to that well too often. We'll have to talk to the doctors, obviously.

We have seen some immediate improvement, however. Her speech therapist came over yesterday at around 4.45 and gave her food. She sat well in her chair, without tilting over as often, and when she turned her body, she moved her left arm with her, when she usually sticks it out straight, locks it, and keeps it back. Her leg remained relaxed throughout the entire session, which is a change, because she usually kicks it straight out. We're hoping the fact that she's relaxed will help her eat, too, and yesterday was one of the more successful feeding sessions she's had. She ate up ravioli with no problem, and later on during our dinner, she actually picked up a few pieces of steak voluntarily and gnawed on them without us bugging her to do so. For her efforts, she got pudding for the first time in a while (she only gets pudding when she eats well). We know she understands us when we tell her that she's only getting pudding if she eats her dinner, but she usually doesn't care. We hope that she's relaxed enough to try other foods. We'll see.

So the first day with the botox went well. We'll keep an eye on her and try to get her to walk during her PT's two-week vacation, and maybe by the time he comes back she won't be so cranky with him. So far we're happy with our decision. Mia seems happy, too, which is a big plus.

Tuesday, August 01, 2006

The triumph and frustration of mobility

First, the good news. Norah is standing freely pretty well these days. She can stand without support for a good ten to fifteen seconds, and is doing it a lot more often. She hasn't figured out how to get up into a standing position yet, so she simply lets go to whatever she is holding onto at the time. We bought her a walker toy to facilitate walking, and she was just holding onto it and letting go and sitting down when it rolled forward. Last week I put her behind it and she took off across the room without hesitating. It was unexpected but quite cool. I keep trying to take a picture of her doing it but the camera is far too fascinating for her, and whenever she sees it she starts crawling toward it. Oh well - I'll keep trying!

Then a few days ago she took a few steps on her own. Since then she has done it a few more times. She can only take about three before she loses her balance, but she's very excited about it and I doubt if it will be long before she's walking more. Tonight she was standing without support for almost twenty seconds without swaying at all, so her balance is getting better every day. We're very excited about it and we hope this helps Demon Child #1, because her news is not as good.

Today Mia had physical therapy, and her PT suggested that perhaps he shouldn't work with her anymore. He was serious, too. Mia is making good progress with her communication skills and even with her fine motor skills, but she has reached an impasse with walking. She has been wearing her AFO and using her gait trainer, but she has figured out how to walk in the gait trainer and go straight without pushing off on her left leg or even using it that much. Obviously this is not the way she needs to learn, and her PT has been trying to get her to bend her knee and move her foot forward and then push off. She has reached a point where she bursts into tears whenever he walks through the door and whenever he tries to make her work. If he leaves her alone for more than a minute, she immediately calms down, but the instant he begins again, the screaming resumes. I've been trying to get her to walk in her gait trainer while he's not around, but whenever I try the smallest thing to make her walk correctly, she freaks out too. We were discussing it today and he said there's really nothing more he can do because she has to master this before he can move on. It's not really anything more than stubbornness at this point, because she knows how to do it and it appears easier than the things she does to resist it. I have watched her move her right foot and brace her left heel on the ground and push forward with her right foot over and over. It looks very hard. Then, occasionally, she'll actually bend her left knee, bring her foot forward far enough to make a difference, and push off on her left foot, and it looks very easy and fluid. Then she immediately goes back to her old way. So I doubt very much if she is resisting because she doesn't know what to do. I don't exactly know why she's doing it.

Her PT is going on vacation for a few weeks, and he suggested some things we could do. He has said many times that it's a question of motivation with Mia, and I have no idea what will motivate her. He said we should clear out a large space in the house by moving some of the furniture and putting her, in her gait trainer, in the center of it, alone. We should place some toys on a table far away from her and simply leave her there. He also suggested putting her in the gait trainer first thing in the morning and trying to motivate her with food, because that's probably when she's most hungry. We're going to try both things, and I really hope something gets through to her, because she can't make any progress unless she gets past this.

We've been having a similar problem with her eating, even though she does fine throughout the day. We decided that both kids are going to start eating what we eat for dinner, and Norah has been relatively fine with it, but Mia is resisting every day. She gets bored with the food she likes but refuses to try new things. I am going to take her to the doctor so he can weigh and measure her to make sure her body index is okay, and then we're going to give her what she gets for dinner and nothing else. If she goes to bed hungry that's her problem. It's strange, because we'll put stuff in her mouth - like a Mandarin orange - and she'll just leave it there. She won't swallow it but she won't spit it out either. It just sits in her mouth for long minutes, and then, usually, she'll finally swallow it. And it doesn't kill her! Fancy that. But we can't go through dinner like that! So I'm hoping that the doctor says she's fine, because I have a feeling she won't be eating dinner for many months to come. Again, she's being stubborn and we have no idea how to motivate her. We know her taste buds were messed up a bit, but when she refuses to even try new things, it's hard to give her something she likes.

I'm not sure why she has become so bad in the gait trainer. I'm hoping that going back to school in a couple of weeks will help, because she'll be around a lot of kids who are completely mobile again. We also plan to make an exaggerated big deal about Norah walking in the hopes that Mia will get jealous. Ah, so manipulative are parents! I doubt it will work, but we have to try something.

So it's been a bittersweet week here, as one kid makes huge progress and the other resists it. On Thursday Mia is getting botox injections (more on that after the fact), so maybe that will help. We'll see.