Norah's mash note

Do they still call them "mash notes"? They totally should.



You'll notice that this is a bit old - I've been lazy about posting recently. Anyway, apparently this was an assignment at school, for which the students had to write an anonymous letter to someone in their class explaining why they like that person. I'm not sure why this was, or if Norah was even really explaining it the right way - if you have kids, you know that their explanations often leave something to be desired - but here's the note she received. It's pretty awesome - she's "beautiful in the eye," she's a "pretty ladie," and "also stunning." Man, that's pretty impressive!

Norah, of course, thought this was hilarious. So far, Norah is unimpressed with boys' attention, which is the way we like it! I also just learned this week that she's popular with the first-graders. I was going around with two other members of the Parent Organization to deliver Teacher Appreciation Week cards, and in first grade, the principal asked how many kids knew Norah, and over half of them raised their hands. Some of them know her from Girl Scouts, but I'm not sure why the other ones know her. But she's popular with the grade below her!

Ten years gone

As I do every year on 18 April, I'm posting today with an annual update about Mia. It has been - wait for it - ten years since her car accident, which is just stunning to me. I can't believe so much time has passed. Am I old yet? If you happen to be a new reader and you're curious about Mia, you can always read up on her issues here. But this isn't about that day as much as it's about the past year of her life. What's been going on?



If you're a regular reader, you probably know some of this, but what the heck, right? Last year at this time she seemed a lot better off than she does right now, unfortunately. She had gotten a g-tube installed in January of 2012, and by April, she had gained quite a bit of weight. She reached a peak of 56 pounds in May, when she went to see her gastroenterologist. All seemed fairly well. But, of course, that didn't last. In late June/early July she started throwing up quite often, and we finally figured out that she was constipated. That was our fault - we weren't paying enough attention, and she was attending summer school, so we forgot to tell them to let us know if she was pooping. We managed to clean her out and all went back to normal for a few months. She was getting a lot of calories and fat, and she was more alert and energetic, and when she went back to school in August, she was working better because she had more energy.



For some reason, in October that all changed. She started throwing up regularly, and we had not idea why. We got her an MRI (the first one in a while) just to check her shunt, which hasn't been operating for several years but might have been messing with her head. The MRI showed that it wasn't her shunt, and it also showed that she has a lot more fluid in her head than normal - some parts of her brain have atrophied because they're not being used, and fluid has filled in the space. It's kind of freaky, actually - if I could figure out how to put the MRI scan on this blog, I would, because it's very weird. The neurosurgeon said that he shouldn't drain her head, because that's just the way her body has responded to the brain injury - the body doesn't like empty spaces, so as her brain shrunk, the fluid filled it in. Draining it might actually harm her. So we left it alone. We also got an EEG, which didn't work out too well - she didn't fall asleep, so it was hard to get a true reading on her brain activity. She's always had seizure activity, even with medication, so we didn't think the seizures were making her vomit, but we thought we'd give it a look.



We've been going to see her gastroenterologist frequently over the past few months, because she's trying new things. First she gave us a thinner formula - not as rich, but also fewer calories and less fat - to try. We were supposed to feed her more often with it, due to that fact that it had less nutritional value in a serving, but that didn't work out. She was still throwing up. She was losing weight, of course, and she couldn't keep her medication down, so this was a bit of an emergency. About six weeks ago or so I weighed her at 47 pounds, which is not good at all. She's currently at about 49 pounds, which isn't much better. The doctor wanted to try a blended food diet, because she thought maybe the formula was doing something to her stomach. We just got that order, so we'll see how that goes. Meanwhile, two days ago Mia was in the hospital for an endoscopy, which can't be any fun. I could have told the doctor she wouldn't find anything, and she didn't - Mia's stomach and esophagus looks perfectly fine. (As an aside, there was at the hospital a couple with a 16-month-old who, I think, was also getting an endoscopy. The mom was pretty broken up about it. I told the nurse after they left that I felt bad for the mom, because she was an "amateur" - I had absolutely no concerns about Mia because she's been through this so often. I was kidding around a bit, but believe me - I'd much rather not have any idea how my kid is going to react to anesthesia and surgical procedures than know exactly how she's going to deal with it!) The doctor did take some biopsies, but I don't think she's going to find anything, because I don't think there's anything wrong with Mia's stomach. I'm convinced that, for some reason, her brain is telling her stomach to reject food - not all the time, just sooner than it would usually. I don't know if that's true, but I hope we can find out. She's going to a new neurologist in May (I don't know if we're going to leave our old neurologist, but I really want a second opinion about her), and we'll see if a fresh set of eyes can see something no one else can.



Of course it's frustrating dealing with her stomach problems, because the less food she gets, the less energy she has, and her schooling has suffered a bit. She was doing very well at the end of last year and the beginning of this year, but ever since she started losing weight, she hasn't had the energy to keep up. It's always the same thing, unfortunately - whenever she seems to make a bit of a breakthrough, something stops her. We're still not sure what's going on with her muscles - ever since August of 2011, she's been struggling with her muscle tone, and she's still not able to stretch her legs straight very well. We've been working with her, and she can finally stand in a stander without crying the entire time, but considering that two years ago she was walking with very minimal support from me and her physical therapist, it's still not good news. We've never been able to figure that out.



Meanwhile, she's gotten really good at moving around in her wheelchair. She still uses only her right arm, and she's really slow, but she usually gets to where she wants to go. She likes wide-open spaces, obviously, because she doesn't have to worry about crashing into anything, but she can maneuver pretty well. She still uses one-word commands far too often, but the good thing is that she's able to use complete sentences if we remind her to use them. She got a new speech therapist late last summer, and she's been working on prepositions and stringing together words with her, and Mia has gotten fairly decent at it. She still gives us the wrong answer when we ask her things, but it's because she's joking with us - we'll tell her that she knows it's wrong and that she should give us the right answer, and she will quickly, laughing as she does it. So her sense of humor is as keen as ever. She's getting a bit better at saying the appropriate thing independently of us - she doesn't always do it right, but she does it more often than she used to. A few weeks ago, completely on her own, she yelled "Idiots!" at a driver who wasn't moving when the light turned green - not the best example, true, because it wasn't very nice, but I didn't say anything at the particular time, and she remembered that I ... um ... occasionally call other drivers "idiots." Whoops. I wasn't proud of her for calling someone an "idiot," of course, but the fact that she used it "appropriately" without mimicking me at that moment was pretty cool. Now I have to get her to say things at the right time that WON'T be insulting. My bad.



As always, we're so happy that she's not dead, because she easily could have been killed. As sad as we are (and we are, almost every day - I've mentioned this before, and it's true; we don't let it cripple us, of course, and anyone who knows me knows I'm usually in a good mood, but whenever I think about Mia, which is often, I can't help being sad), we're proud of Mia because she's had to go through so much and she's almost always in a great mood and she tries so hard in her life. I can't even imagine what it's like to be her - I don't even know how much she understands about her situation, but it still must be frustrating - but she's such a wonderful girl and as annoying as she can be (and she can be), she's always telling us she loves us and she always want to snuggle with her mommy (me, not so much, but that's okay). Norah continues to be a big help - she's far more mature than most kids her age, because we've pretty much forced her to be, and she helps us out a lot. We're still working to make Mia's life more enjoyable and easier, and even though it will probably never be easy, we can still work toward that goal.



So we'll hope that someone can figure out why her stomach isn't working perfectly, and maybe we can get her standing up more often. We're getting a new mini-van soon, because she's outgrown the one we have and the new one will be modified so we can just put her wheelchair in where the seat is. It's pretty cool, actually - we already have an estimate on it and now we have to present it to the court. Her lawyer is moving to a different job, so we'll have to check out a new one (who her lawyer recommended), so we're hoping that transition goes smoothly. She continues to enjoy school even though it's been difficult this year, and her IEP meeting went well and her goals for next year are certainly achievable. She's come so far in a decade, so even though she still can't do as much as we'd like, it's wonderful that we've been able to have the time with her. And she usually makes me laugh at least once a day, so I can't stay too sad even when I think about her.



If you're that interested, I've been doing annual reviews for some time: 2005, 2006, 2007, 2008, 2009, 2010, 2011, and 2012. Yeah, I can't believe it's been ten years, either.

Mia's stomach problems: Continuing down the rabbit hole (so to speak)

When last I checked in about Mia and her tendency to vomit, she had been put on a new formula (which didn't work) and the doctor had ordered a gastric scan to see what was what. Let's pick up the story there, shall we?

Over Spring Break (the second week in March), I took Mia to the hospital for said gastric scan. They put a radioactive dye in her formula (yummy!) and put some into her stomach and then let her lie there for about an hour while they watched what happened. A few days later, the doctor called and said that, yes, her stomach empties much more slowly than it should. I mean, I could have told them that, but they used SCIENCE! to confirm it. Yay, SCIENCE!

The doctor prescribed erythromycin to help clear her stomach more quickly. Some of you (those who have no actual life, I would imagine) might be thinking to yourself, "But Greg, isn't erythromycin an antibiotic?" Correct you are! However, a side effect of erythromycin is that it's a "gastric agonist," which means it helps the stomach digest things faster. How handy is that? (On a side note, Gastric Agonist was the name of my punk band in college.) One of Mia's therapist's sons (phew!) actually took it a few years for the same reason, and it helped him quite a bit. So we got some erythromycin and fired it up!

Yeah, it didn't work. She had a few days during which she managed to get three complete feedings in her, but over the first week, I think she had two (2) vomit-free days and four (4) with vomit (on the 7th day, I didn't feed her the third time because we had an Ice Cream Social at Norah's school and I didn't want Mia to vomit at the event). So I called the doctor, and a few days ago, back we went!

I hadn't spoken to the doctor about the actual gastric scan, but she said it didn't show WHY her stomach wasn't emptying as fast as it should, just that it wasn't. SCIENCE! She then suggested that we need to slow down the rate at which we fill her stomach. I don't really think her vomiting has anything to do with the speed at which she's getting the food - last Sunday I didn't feed her after about 1 in the afternoon, and she threw up around 5 in the afternoon. She had four hours to digest with nothing going into her stomach, and she still threw up. But I figured we'd give that a chance. More than one person has suggested feeding Mia at night, because then you can do a ridiculously slow feeding and it doesn't interfere with her life at all. We object to this for a few reasons: One, Mia likes to figure out how to take things off, and we fear she'd figure out how to pull the tube out of her stomach. Unlike other kids, you can't explain to her that this is for her own good. Two, I posted these pictures on Facebook a few weeks ago, because they were very cute:





Mia sleeps in a fetal position and moves quite a bit during the night. We fear that she'll do something to the tube running out of her stomach and detach it that way, not even deliberately. So night-time feeding is, we think, out. On Thursday we sent her to school and they fed her very slowly for 5 hours. When she came home I fed her for another 4. She only got ~550 ml of formula into her, which is far less than the 800 or so that the doctor wants. She's only awake every day for about 12 hours (maybe she'll need less sleep if she gets more food, but right now, she really needs it), so basically we'll be feeding her constantly. But we're willing to try. Then, yesterday (Friday the 5th), we got about another 500 ml into her ... and she threw up. Good times! So today I'm feeding her the regular way, which means she's not going to get very much into her. On Monday I'll call the doctor again and tell her what's what.

The doctor has decided to give her a new kind of formula which is just blended food, but we haven't gotten that from the medical supply place yet. She's also going to do an endoscopy to see what's going on inside Mia. We'll see what happens with that. I'm convinced her brain is telling her stomach the wrong thing - maybe telling the wrong sphincter to close so that the food comes up instead of going down. The brain is a weird organ, and who knows what Mia's is telling her body. I think the only way we're going to get her to stop vomiting is the get the neurologist involved. But that's a rant for another day! I'm perfectly happy with the doctor's last suggestion, which is hospitalizing Mia for a few days to check her out thoroughly. Maybe I can convince her that that's the way to go. We shall see!

So, a lot of stuff going on with Mia and her digestive system, and none of it working. Mia: The Perfect Metaphor For The American Government! Whoo-hoo!

(Oh, that was just mean. It's an insult to traumatic brain injury sufferers everywhere!)

Tune in later for ... progress? Wouldn't that be nice?

Norah's mystery story!

Norah, like most kids (I assume), likes to create little stories. Back in the olden days, we could only share the physical copy, but thanks to the Internet, we can now scan them and share them with anyone who wants to read this blog! Good times! So while this isn't the most unique thing in the world, it does have ... a shocking twist!!!!! Read on ... if you dare!



Ah, the title page. Note the nice cursive - in her second-grade class, they've recently switched to all cursive, all the time, so she's improving quite quickly.





Two beautiful scenes of domestic harmony and love. Oh, the child is so happy!



The mom is heading out (note the purse), and the child asks politely if she can go with her. Note the crazy storytelling skillz on Norah, making sure that our eye moves left to right to read the dialogue. That's good stuff!





Here, not so much. I appreciate Norah trying to mix it up, but the child should still be on the left. Notice, however, that she try to mitigate it a bit by making the word balloon from the child a bit higher than the mom's, hoping we'll read it first.



Uh-oh, the story takes a disturbing turn. The mother doesn't know who the child is all this time? How weird.

Then, here comes the shocking twist ...



Dang, I did NOT see that coming! Who could have?

So that's Norah's epic. I think you'll have to agree that it is truly stupendous. Do I smell a Pulitzer? I think I do!

Norah's latest grades

I've been writing a lot about Mia recently, but today it's all about Norah, who today had her parent-teacher conference. There's never been any issue with her behavior, and her grades are usually fine, but I can still brag occasionally about her, right? In her school, an 'A' is 94% and above, and Norah got all 'A's, which is nice. Her lowest grade was in Phonics, where she got a 95%. They're starting writing exclusively in cursive on Monday, so we'll see how that goes. They use the Spalding spelling test (for what that's worth), and she's spelling at a fourth grade level (she's in second grade). The school uses the McCall Crabbs reading comprehension, and she's reading at a sixth grade level. So that's cool. She went to a book sale a few weeks ago and she got a few old-school Nancy Drew books. She likes them, and while she doesn't know all the words, she gets the gist of them, which is nice. In the non-graded things, she got "outstanding" in penmanship, citizenship (basically, behavior), homework completed, and academic effort. That's because Norah is awesome!

I'm sure Mia will have some complicated medical issues soon enough, but for now, Norah's doing well in school. That's always nice!

A broken record?

I mentioned last time that I had taken Mia to the gastroenterologist and that she prescribed new formula that was supposed to go through her more quickly. It has fewer calories, but the doctor hoped that we could get it in her more often so that it would balance out. With a renewed purpose, we began!

And, yeah, that didn't work. The weekend we began it - 2-3 February - was okay, although we only were able to feed her twice on Saturday and thrice on Sunday. But she didn't puke and on the Sunday, we managed to get all her medication in her at their proper dosage in a long, long time. Then came the week. I took the new formula to school and told them to feed her twice, and I would try to feed her twice when she got home. When I did so on Monday, she threw up. It was still early and she was still fairly wide awake, so I fed her later and all was well. On Tuesday, she threw up again after I fed her for the third time. This time, she had occupational therapy, so by the time that was done, it was too late to try to feed her again. On Wednesday, the nurse called me and said that she threw up after both times they fed her. Charming. I didn't feed her when she got home, because she had both physical therapy and speech therapy, and after that, she was exhausted. On Thursday, as scheduled, I called the nurse.

I actually managed to talk to the nurse (which is never a given) and explained to her that the new formula wasn't really making a difference. She said she'd talk to the doctor and get back to me. On Friday, she called back and told me the doctor wanted to do a gastric scan (which she said she was going to order at Mia's appointment, but I guess she never got around to it), so the nurse put in an order for that. We tried to feed her three times that Sunday (the 10th), and she threw up again. I noticed, too, that her sleep cycle was pretty screwed up. She was waking up at night and not getting back to sleep very easily, and then, at school, they would let her nap in the early afternoon if she started to drift. I never had a problem with them letting her nap, but last week I decided that it probably wasn't the best idea. I told them to keep her awake by any means necessary at school, which I thought might help her fall asleep and stay asleep at night a bit better. Meanwhile, I simply stopped feeding her the formula when she got home and instead gave her solid food. Both things worked okay - she slept pretty well all week, and she actually ate some actual food, including some chicken at dinner one night and steak at dinner another night. I spoke to the nurse again on Thursday and asked when the hospital would be calling me to schedule the gastric scan, and she told me to give it until the middle of this week. So come Wednesday, I'm going to start trying to annoy people into scheduling the scan. I hope it won't come to that - it's always vexing when you realize that a business that supposedly is trying to help people doesn't care all that much about, you know, helping people.

Mia's problem remains puzzling. We can't feed her after about 3 in the afternoon, because even if - like yesterday - she's only been fed once, she still throws up if we feed her too late. I don't know what that's about, but I just think it's a problem with her stomach. It would be nice if we could get the scan scheduled so we can see what's what, because if she can't keep a lot of this formula down (it's the thinnest stuff they have), there's not much else we can do.

I promise to write something fun next time! Norah has a parent-teacher conference coming up, and those are always good news!

Mia's continuing health issues

January was kind of a dull month for the kids, although they did plenty of normal awesome stuff that they do all the time. Mia's still having health problems, though, and I wanted to wait until she saw her gastroenterologist today before writing about it. Visits to the doctor are always fun!

First I took her to her pediatrician in the middle of the month. We were a bit worried about early puberty, but her doctor told us there was nothing to worry about in that regard. That's nice. The more important visit was to the gastroenterologist. Since October, Mia has been having some worrisome vomiting problems, and I have been tracking it. In January she vomited 7 times, which means every 4-5 days, and that's way too much. It was messing her up, too - she was losing weight, because we couldn't feed her as much as she was throwing it up so much. We had been feeding her 3 boxes of formula a day, which was enough for her to get her weight up. Now we can't do more than 2, because if we try to get the third box in her, she throws up. If we gave her seizure medication, she threw that up, too. We have to give her the seizure medication when she has something in her stomach, too, which is annoying. So we stopped feeding her the third box - the people at school would give her 2, and then I would just try to get her to eat solid food when she got home. That's a fool's errand, though, and so her weight dropped. Plus, it's been dicey giving her the seizure medication, because some days she simply doesn't eat anything. This was leading to more seizures, which messed up her sleeping. So she was more tired, which helps lead to ... more vomiting! Yes, the cycle is quite fun, why do you ask?

I told the gastroenterologist that I wouldn't mind it one bit if we had to hospitalize her for a few days so that all her doctors could look at her in a controlled environment. As I've mentioned before, they can never get a good reading on her EEG because she doesn't fall asleep, but if she were in the hospital for the entire time, I'm sure she'd have a seizure at some point. Plus, she might throw up at some point, especially if they tried to get too much food in her. I told the doctor that it seemed like her stomach wasn't emptying, because occasionally she'll vomit when she hasn't had anything for many hours, and formula comes up. Your stomach should clear every 3-4 hours, so if it's been longer than that, something isn't working in her stomach. She ordered a test to track the path of food through her, but we haven't scheduled it yet. She also gave her new formula, which is supposed to empty out of her stomach more quickly. Mia was doing pretty well with her weight for much of last year, but she's back down to 49/50 pounds, which is significant when she should be 55 pounds or higher. So we're going to try the new formula this week, and if she doesn't puke, we're good to go! I still think it would be better to do the test to make sure everything is going through her at the correct rate. I suppose that's the next step.

It's very frustrating, but that's just life with Mia. Every so often, things will be going relatively well, and we should look out, because we know something crappy is coming soon! Her seizures do seem a bit better recently, so that's something. She's still pooping fairly well, so that's also something. But she really needs to gain weight. Again. Sigh. Rinse and repeat, really.

Holiday photos!

Yes, it's time to end the year with some pictographs from the holiday season. First: Christmas! Second: Our brief visit to Sedona! Join me, won't you?











Those are the Christmas photos. Pretty standard stuff. Mia likes to tear off the wrapping paper, and Norah digs her presents.

Then on Thursday, 27 December, we went to Sedona for a few days. My mom really wanted to go, and who are we to say no to my mom? The afternoon we arrived, it snowed/rained/hailed a bit, and we took the kids to an outdoor shopping mall:



Friday, however, was gorgeous, if cold. Here's the view from right outside our hotel room:



Then we went on a Pink Jeep tour. We weren't sure if Norah would like it (because of all the turbulence), but she loved it. Here we are (my mom stayed at the hotel with Mia, who NOT have enjoyed it at all):



And here's Norah and the jeep:



We drove up Oak Creek Canyon (like you do) and stopped at the scenic viewpoint at the top. This is the third time we've done it, but the first with the kids. Norah got out and played in the snow. She likes snow, but rarely sees it:



So that's just a little of what our holiday has looked like. Soon Krys will be back to work (she took last week off), my parents will be driving back to Pennsylvania, and the kids will be back in school. I know, what will I do without everyone here all the time????

To EEG or not to EEG!

On Friday the 14th Mia went to Phoenix Children's Hospital to get an EEG, or electroencephalogram, which measures brain activity. This was because of all the seizures she was having back in October, which caused up some concern. Her neurologist said it wouldn't be a bad idea to get her an EEG, because it had been some time since they have done one (2007, I think). So we loaded up the family and went! I needed to go because I need to lift her. Krys needed to go because she has the best chance to get Mia to sleep during the EEG, as sleep is the best time to measure the brain activity. Norah had to go because the appointment was at 2 in the afternoon, and we wouldn't be done by the time she got down with school. So away we went!

The EEG was not terribly successful, unfortunately. We got Mia hooked up to the electrodes and such, and then Norah and I left the room so Krys and Mia could snuggle and Mia could fall asleep. The lights were off, Mia was tired (they recommend keeping the kids up late the night before, which we didn't do, but Mia is often tired at 2 in the afternoon), and all seemed well. The test lasted 43 minutes ... and Mia didn't fall asleep. Krys was surprised - her eyes were closed, her breathing was even, but the technician said her brain never went to "sleep," and then Mia opened her eyes and asked to watch TV, which means she wasn't going to go to sleep anytime soon. So we were done.

The technician told us they would look at the test, and last week we got a phone call from the nurse of the neurologist. The neurologist is on vacation, but an epileptologist (a doctor who specializes in seizures) looked at the scan and recommended that we increase her medication slightly. As this dude has never met Mia, I'm still going to call her neurologist back and see what he says, and I was thinking that taking her to an epileptologist might be a good idea anyway, so we'll see where we go from there. Her seizures are better than they were in October, so it's not as pressing a problem as it was then, but we'd still like to see if we can figure them out a bit more. It's frustrating that they can never get a good reading on her. A day or two in the hospital might help that. I'm not sure if they'll recommend that, but it's certainly something to consider.

So, another inconclusive test. That's not too surprising with Mia. It's always fun!

Norah rides a bike!

Yes, it's true. A few years ago, you might recall, I started teaching Norah how to ride a bicycle. She got her training wheels off and figured out to ride and stay upright pretty well, but she could not stop very well, or, more importantly, start. She had figured out that if she just stopped pedaling, she'd eventually stop, which isn't the best way, but it works for her. Starting, however, is pretty important, and Norah couldn't figure it out. Her problem is that she does not like feeling out of control, even for a second, so the fact that she needed to push off and move for an instant without pedaling or even having her feet on the pedal didn't sit well with her. It's for less than a second, true, but she couldn't convince herself that it would be okay. I told her last year that I had really explained it as well as I could, and it would be up to her to overcome that nervousness. (This is the reason she can swim quite well but can't dive. She doesn't want to leave the ground for long enough to get a good dive, because for those few moments, she's not in control. We hope she'll figure it out one day.)

So this year, she had outgrown her first bike, and I bought her a new one. I told her that this one would probably be her size for this year and at least two more, and if she couldn't learn to ride the bike by then, I wasn't buying her another one. I really didn't think it would take that long, but with Norah - who wants to do everything perfectly the first time she does something and gets in a bit of a snit if she doesn't succeed immediately - that was a possibility. She couldn't get it for a few weeks, but she kept trying. When she can get over being in a snit, she can often will herself to do something, and that's what happened here. Once she realized that being in a snit didn't do her any good, I heard her talking to herself when she was trying to get on the bike and telling herself what to do and not to be afraid. After that, it was pretty easy for her. So, of course, I had to film her ... well, get Krys to film her:

Here she is getting started:


Here she is stopping. She still kind of drifts to a stop, but she's getting better at it.


So there you have it. She was 7 years and a little bit over 5 months when she mastered the bike riding. I don't know if that's a typical age to get bike riding. I know some kids at her school were much younger, but I also know that some kids she knows haven't learned yet, but of course it's very possible their parents haven't taught them. She's really enjoying it, too - we go out almost every day. Soon she'll be able to cross the big streets, and then ... look out!