Picture to go with yesterday's post....

I had this particular photo in mind when I was writing that post yesterday, so I thought I'd post it too. She's about 5 weeks old here. I remember at the time that I thought this was the cutest little picture showing Avery's scrawny little legs and how long and thin she was! Now it makes me a little bit sad because now that I have Brogan I realise that healthy babies really do have quite strong legs from the very beginning. And do you see what I mean about her little long thin feet? They still look almost as fragile now. I do now wonder what her legs and feet would have looked like had she not been born with hydrocephalus and CP. I think the other thing that's been bothering me a little bit is that it now makes me wonder whether I should have been doing a better job. I think that because I was never really aware of how much she was affected I now wonder whether I would have pushed her more and worked harder to help her reach milestones if I'd been more aware of what she "should" have been doing. I don't know. I suppose there are good things and not so good things about her being my first, because it meant I had all the time in the world to devote to her, but it also meant that maybe I wasn't completely aware of how much help she really did need, if you know what I mean.

Brogan's feet make me sad...

This might sound a little strange or something, but sometimes my 4 month old baby boy Brogan makes me sad....! Here's why. Avery was my first baby, and so I don't think I was really aware of everything that was not "normal", since I'd never had any experience with other babies. So it's only now that I have Brogan that I can truly appreciate how Avery's medical conditions have affected her since before she was even born. She was so skinny and cute and frail, and now I have Brogan who is sturdy and strong and reaching milestones on time, and it makes me really see for the first time really how hard Avery has always had to work. She's amazing. This afternoon I was once again looking at Brogan's feet and legs, and he has such strong legs with the little fat rolls and his feet are so perfectly proportioned. Poor Avery. She's always had such skinny, frail little legs, and if you compare her long, thin feet with Brogan's, even now it almost looks like Brogan's feet are more ready to carry his weight and walk than Avery's are to do the same. It makes me wonder whether her feet would actually look different if she didn't have CP. I'm sure her legs would, because I think a lot of the skinniness is a result of her poor weak muscles, but I hadn't thought about the possibility that her feet may actually have developed differently as a result of the CP too. I wonder.... We have been working so hard on the W-sitting thing, but it makes Avery so frustrated sometimes. I feel bad for her, because it's how she's most comfortable and stable, but I just can't let her do it knowing how bad it is for her developing bones and muscles. Gabe and I both tried to W-sit this morning, and it's not comfortable...! Gabe couldn't even do it, and while I managed to get into that position, it was NOT comfortable! It can't be good for anyone, let alone my little girl with her leg problems...!
Anyway, should I feel bad about feeling a little sad? I absolutely adore both of my children, that's not even a question, and I am excited by all Brogan's progress, but in addition to the excitement there is also sadness for me. Sadness for my little girl who, since the day she was born, has had to be coaxed and forced towards developmental milestones which come so naturally to other children, and yet she's born it all so well, and I think she thinks that it's totally normal and that everybody must go to all these doctors and therapy appointments all the time!
I also have been thinking that it was also a blessing that Avery was my first baby. Not only for the fact that it meant I was able to devote all my attention to her and her extra needs, but also because it meant that I was able to avoid just a little bit of the anxiety in a way, because I didn't have a "normal" child to compare and contrast her progress against. Do you know what I mean? *sigh* I feel as though I'm babbling a lot but not actually getting my point across properly... sorry!
Also, sorry for the lack of posts recently....my Mother is visiting until the day after Christmas, and we've been really busy. Poor excuse, I know, but it's the only one I have :)

Hippotherapy again

This week Gabe wasn't working on Monday so he came out to hippotherapy with us, which was nice. For the first time ever Avery didn't want to get on the horse! She kept on saying "Noooo!" and crying when Miss Kathy took her over to the horse. Of course, she was fine once she was on the horse and it started moving, but it was strange! She's never not wanted to go ride the horse before, so I don't know what that was about. She had a cold over the weekend and still wasn't feeling completely better, so that was probably it.

Here she is "driving" Promise with her "steering wheel"!!

Flying like an airplane! She can now do this for quite a long time, which is great because of course it means that her core strength and trunk stability is getting stronger.


Clapping, tapping her helmet and high fives are all regular parts of the routine :

Next week is the last week of hippotherapy this fall :( How sad. And it might be our last time at Many Blessing Farm, which is even sadder, because they're all so nice there. But starting in the spring Carilion will be doing hippotherapy down near Rocky Mount, so we should be able to do it there with Lisa her PT, which would be wonderful for 2 reasons:

1. It's Lisa. Lisa is great. And She's been working with Avery since she was a tiny little 4 month old :)
2. It's less than 20 minutes from our house, whereas we drive almost an hour to get to Many Blessings Farm.

So, while we love the farm, and Avery not only loves the horses and the people, but also the cats and the bunnies :), it just wouldn't be smart to carry on going out there if we have the option of doing it closer to home. Also, it would be less complicated as far as insurance goes, because right now she's getting therapy through 2 providers (Center for Rehab and Development, and Carilion Pediatric Therapies), which her insurance doesn't like and it's a big ordeal to get it re-approved every few months. They want he to only have therapy through one provider, so they would probably like it better if she was doing PT and hippotherapy through carilion. Anyway, that's a few months down the road, so we;ll see how it all pans out then.

Theratogs

I know I've mentioned TheraTogs before, but we've been using them a lot more diligently for the past couple of weeks, so this morning I took a couple of pictures of Avery wearing them so you could see what they look like.

She looks like she's standing on her own here, but she's actually leaning against the table! But her standing balance has been getting better too - her record is 12 seconds!

So, before we got our own set of theratogs, Avery just borrowed some once a week when we went to PT, and she wore them over the top of her clothes. Now that she has her own, I put them on underneath her clothes before she goes to school. It's been great because 2 weeks ago I went into school to show Leslie (her teacher) how Avery wears the theratogs and how to put them on, and we talked about how to gradually build up to her wearing them the whole time she's at school. The PT and I had talked about that before, and she had said that we wouldn't want to go straight into wearing them all day because it would make her sore, since they basically pull and stretch her muscles the whole time she's wearing them. So we'd been putting them on for short periods at home for a while, and the plan was to send her to school wearing them, and then to play it by ear and take them off as soon as they were bothering her. While I was there Avery walked around in her walker with her theratogs on, and they were as amazed by the improvement as I was the first time I saw her wear them! They really do a great job.

So the next day (Friday) I put them on her before the school bus arrived, and when she got home Leslie had written a note in her book saying that she'd asked her if they were bothering her every few minutes or so, and Avery said she was fine until about 1:50pm when she said they hurt and she wanted to take them off. So that was pretty impressive! Almost 3 hours, because I put them on her at about 11am. And almost every day since then she's come home still wearing them!

She really doesn't mind wearing them at all. Some days she complains when I tell her it's time to put them on, but she does that sometimes for her braces, eye patch, and even when I just want to do her hair! So it's not because they're torturous or anything, it's just because she's an opinionated 2 year old :) Of course, that's not to say that they don't get a little uncomfortable sometimes... the way they work is by stretching and pulling, so the straps have to be tight enough to do that, so sometimes when she's been wearing them for a while, they do leaves quite sore-looking marks. And while they do go under her clothes, they go over the top of her braces, so the marks from her braces are also a little more pronounced.

The elastic straps that wrap around her leg have a silicone criss cross paterrn that helps them stay in place, that's what made this pattern. You can also see the outline of her braces on the back of her calf here, and her sock mark.

In this picture you can see why we need new braces. They're not supposed to leave those red marks on her ankle or heel. And I have to say that while it looked particularly sore on this day, and the worst of the red marks didn't fade completely for an hour or so after I took them off, it didn't seem to bother Avery very much. She didn't complain about it at all. She just said "Okay" when I asked her if she wanted to take her braces off when she got home.

Even in the short week that we've had this ball, Avery's balance has improved A LOT! When we first got it we couldn't let go of her without her falling off, and this morning she sat on it for about 15 minutes and I didn't touch her at all. Perfectly at ease. And look how flat on the floor her feet are. This ball is a good thing.

Peanut

Avery's peanut ball (aka "horse substitute") arrived in the mail last week. It took me a little while to finally buy one, because when I started shopping around I discovered that they come in all sorts of sizes, from about 12" diametre to something like 56", so I wasn't sure what size would be best. I thought that the larger sizes would obviously be closer to the size of a horse and would give her a great stretch, but the smaller sizes would offer her more independent balancing opportunity. So I asked Lisa, her PT, what she thought, and she said that it would be best if Avery was able to touch the ground, so we decided on a 16" ball. SO here it is!
Avery loves it because she loves bouncing and jumping. And it's interesting because you can see it working: when she first sits on it she can touch the ground only with her toes, but the longer she sits and moves on it the more relaxed and pliable her muscles get and pretty soon she's able to comfortably put both feet on the ground. So we've moved the table out of the TV room so that there is more floor space, the idea being that every time she watches TV she can sit on her peanut and get a good amount of stretching and exercise in. It's definitely a good investment in my book, and Avery loves her new toy.

Blog appearance

So...in case you haven't noticed, I've been a little fickle about the appearance of this blog recently, as well as my other blog. I keep on deciding on a template, and then deciding a few days later that I don't like it, but I'm going to try to stop jumping around now and stick to this layout for a while :) Honestly :)

Avery's AFOs

I've been meaning to get some pictures of Avery's braces on here for a while, so here they are finally! She's had this particular pair for about 6 months now, and as you can see, she's starting to grow out of them. Last time we went to see Dr Brown he wrote a prescription to have them adjusted or replaced, but she's been complaining about them quite a bit recently, so I have a feeling we'll need to get a new pair and not just have these adjusted. We'll see, we have an appointment at the orthotics place on Friday morning.
Avery can now get up into this chair all by herself!!!! She's a pro! She just started doing it about 3 weeks ago - before that she needed a lot of help getting into these little chairs. For a few weeks before she finaly figured it out, she was doing a lot of playing around on the stairs - climbing up one step, turning around, sitting down, climbing up to the next step, sitting down - so I think that helped her figure out how to do it and then she was ready to try it with the much smaller space of a child's chair. They also sit in little chairs every day at school, so that probably was part of it too. So proud of her! Of course, the one time she tried to get out of it properly by turning around and getting down, the chair fell over and she banged her head on the wall, so she doesn't do that anymore - she prefers instead to lean forward with her arms outstretched until the chair tips forward and she lands on her hands and knees :)

You can also see she's wearing her eye patch in this photo. It used to be a battle of wills every time we put her eye patch on, but for the past couple of months she has been an absolute angel and doesn't even complain about it! I think it's because she gets to pick out a sticker to put on the patch every day, and she thinks that is pretty cool. Also, recently when she's been choosing her sticker, she's been looking forward to showing it to Miss Leslie when she gets to school! For the past week she's picked a football (soccer ball), which she calls a baseball, almost every day, and has just been so excited to show it to Miss Leslie! It's quite cute! She wears it for two hours every day, and then she gets to take it off herself, and she likes to peel off the sticker and stick it on her shirt. I'm amazed at how compliant she is - I would hate to wear one of those things every day. She's such a sweet girl.




Avery loves her little brother! She's so gentle with him and sweet. It's funny too, because everytime she sees me changing his dirty diaper, she comes over and says "He pooped!! Oh! Well done Brogan! Good job!! Yay!!" and she claps her hands and cheers! I think that because she's always struggled with constipation, she thinks it must be just as exciting for everyone else when they poop :) Speaking of constipation though, Avery has been doing marvelously recently!! For the past two weeks I haven't even had to give her any miralax, and she's been going without any fuss at all almost every day! Maybe we've finally overcome the contipation hurdle? I don't know, but I certainly hope so! I think that because she's on her feet and walking around so much every day at school, it's finally got her bowels active and moving the way they should. Exciting times!

Hippotherapy photos

This is Avery riding her horse Promise with the wonderful people at Many Blessings Farm. These pictures were taken the last Monday of September. You see she's sitting "normally" on the horse, with her "sidewalkers" holding her legs as instructed by the physical therapist, Kathy. During a typical 1/2 hour session she also spends time sitting sideways, and also backwards on the horse. Also, you see she is holding rings in all of these photos. They have her playing with various toys as they ride around, and the purpose of the acticities they do with the toys is to strengthen core strength and balance, etc. Some of the things they will have her do are:

• One of the sidewalkers will hold up their hand and Avery has to reach over and put the ring on their arm. This makes her work those trunk muscles, as well as test her hand-eye coordination.
• They have various toys which Avery needs both hands to manipulate, which means that she's not holding onto the horse with her hands and is therefore using her trunk muscles to keep her balance as the horse moves.
• For the same purpose they'll sing songs such as If you're happy and you know it which again gets her hands off the horse and testing her core strength
• Sitting backwards on the horse is an even bigger stretch for her adductors

Physiatrist appointment

I've been slacking...again. But we've been really busy, and then both my babies got colds. Excuses excuses :) SO there is stuff to catch up on.
Avery had an appointment with Dr Brown, her physiatrist, who happens to be my favourite of all her doctors. He's just so nice, and he's communicative, which is so important. Plus, he was the first one to tell us with confidence that Avery will eventually walk independently, which may have softened my heart toward him a little!! :D Anyway, we were supposed to see him in August, but I happened to go into labour on the morning of the appointment, so we had to cancel ;)
They do all sorts of measurements of Avery's range of motion and reflexes and all of that good stuff whenever we go, and it's been interesting the last couple of times that while Avery has improved in her walking and mobility immensely, her muscle tone and range of motion has barely improved, and in some areas has actually decreased. Dr Brown says that what it means is that she is fighting her muscle tone with every step she takes, and that it's pure determination on her part that she's doing so well. That's why he prescribed the valium in the first place - to make it easier for her to move without having to fight her own body so much. They were very happy with her progress though, and as always she was an absolute joy and seemed to make everyone's day! Our appointment wasn't until 1pm, but it turned ou that we were his last appointment of the day, and we were there for 2 hours, and Avery had a great time showing off her mad skills to them :)
Here is the rehab plan Dr Brown gave us this time:

Maybe we can talk daddy into buying a pony (haha), but if he doesn't go for that a peanut will work (The really big ones that you can sit on). Hippotherapy would really help her, the more the better. AFOs are small but some trouble donning the left. They need to be adjusted or replaced.
I think it is worthwhile to try and gently slowly carefully increase the Valium as we discussed: the ladder is first to go to 0.3mg in the am and 0.6mg in the pm, wait 3-7 days, then go to 0.6mg twice a day. If she has any problems, you can always go back down and you can definitely stop at a certain point (if she is tolerating it) and just stay there (like you could climb or use a ladder). From the above point you can go to 0.6mg in the am and 1mg at night, but I wouldn't go past 1mg TWICE DAILY for now.
Laura [the PT who does all the measurements etc, who also happens to be a friend of Gabe's from his days at the Rescue Squad] will discuss the adjustment of how we wear the theratogs that really seemed to help today.
Disposition: Return to office in 3 months.

So I am now even more sure that hippotherapy is more than worth our time and effort! I mean, Dr Brown couldn't stress enough how much good it would do Avery. He said that in an ideal world he'd want to see her on a horse every day.
Avery has been complaining a little bit about her braces recently - we have an appointment at the orthotics place next week and a prescription from Dr Brown to have them adjusted or replaced.
Gabe and I are in different places over the valium issue. I increased the dosage as Dr Brown suggested to 0.6mg in the evening and 0.3mg in the morning, and Avery was irritable for more than a week after that. In my mind, I was still willing to give it another chance though because that week had also been a stressful one for us with some uncertainty with our house, and having family come visit over the weekend, so I decided to give the higher dosage another "normal" week before going back down. Anyway, Gabe was putting her to bed one night last week, and he called down and asked if we were still giving her 0.6mg, to which I replied, "Yes, I'm giving it til the end of the week", meaning I was giving the higher dosage til the end of the week and if she was still irritable I would go back down to the lower dosage. He said though that he's ready to stop giving her any valium at all though because he says he doesn't see that it's doing her any good. Hmmm.
Here's the thing. Avery is making progress. It's hard to know what exactly is responsible for the progress she's been making, because in the last few months she has started hippotherapy, started taking valium, started preschool, and continued with her weekly physical therapy. And in addition to that, she's also just getting older and more independent, so it's just impossible to credit her progress to any solitary one of those things. It also means that, while she has made progress since starting the valium, we don't really know for sure that she's made any more progress than she would have if she hadn't been taking it. Do we? Anyway, the way I feel about it is this: we decided it was worth trying, and since what's she's taking right now is an infant's dose, we should definitely continue to give it a chance to work on a slightly higher but still very conservative dose. Gabe seems to think more along the lines that since this tiny dosage doesn't really seem to be doing much, we should just stop giving it to her.
*sigh* It seems that more often than not, the right choice isn't clear.

Hippotherapy

Avery started hippotherapy again last week. Yesterday was her second session this fall. She loves it so much! Gabe and I were debating whether we should do it again or not, because it means that I have to get her out of preschool early every week, and it's almost an hour away, but I really think that she benefits from it. I'm more convinced of this than Gabe I suppose. I think he's not entirely convinced that it will help her physically, and is concerned that the only good thing about it might be that she loves it so much. I'm more convinced that it's an excellent physical therapy for her though, for a few reasons. They say that the movement of the horse underneath her simulates movement in her hips which is almost exactly the movement she would be doing if she were walking all by herself. Also, if nothing else it's an excellent half hour long stretch for her legs, which, when you consider how it's impossible to stretch her without making her scream, almost makes it totally worth it just for the stretch! When she was first diagnosed with CP, they did an x-ray of her hips because they were saying that the abnormal muscle tone and the way it can pull on joints, etc, it can actually make the hip joints form abnormally, so I think it's so important to do as much as possible to keep her hips positioned correctly, and that's another thing that I think hippotherapy helps a lot with. There's all sorts of evidence and research that supports hippotherapy though, and that's good enough for me. Also, there have been several people I've spoken to who have personally attested to the fact that hippotherapy has done wonders for their own children. Even if I didn't think it was helping Avery, I would rather do it and find out later that it didn't really do much, than NOT do it and find out later that it would have helped her.
I have some pictures and video of her riding somewhere, but I can't find them right now. I'll try to find them and post them later.
American Hippotherapy Association
Many Blessings Farm

Why would you??

I would have thought that it was obvious that I should not be your choice of confidant if you wanted someone to complain to about the fact that your 10 month old baby has just started walking and you think it's just too soon! Why would you do that?? I was talking to a friend of mine the other day and she was complaining to me because her son has just started pulling up on things and walking around holding on with one hand, and this upsets her because he was only army crawling before that and she wanted to see him crawling around on all fours for a couple of months first. Seriously, what did she expect me to say to that? "Oh yes, I'm so lucky because my 31 month old isn't walking yet so I still get to enjoy watching her crawl around on all fours"?? Sometimes it's like people jsut don't think at all before they open their mouths. So I just told her that there are many far worse tragedies than having a walking 10 month old. Nincompoop.

Preschool and valium

Avery started preschool last week!! I can't believe it! But so far it's going great, and she loves it! Once she's settled in properly (in about a month) they'll do the PT evaluation to see what she needs specifically as far as physical therapy goes, but until then there are also a whole bunch of other goals on her individualised education plan (IEP). What a great program. There are 8 kids in her class, 6 boys and 2 girls. The other girl's name is Ava, so they have an Avery and an Ava! The teacher is really great, and then there are also two paraprofessionals in the classroom with them. Today they did some fingerpainting. Avery has an issue with getting her hands dirty, so I was pleased to hear that she didn't get too bothered by the paint on her hands, and that once they started she actually got into it a little bit, so that's great.

At the end of her first day
Waiting for the bus
Still waiting

An update on the valium front: We started giving her 0.3mg of valium once a day before bed. The first week she seemed to be more irritable and sleepy and stuff, but then that sort of went away, but there was no noticeable difference in her muscle tone. So we upped the dosage to 0.3mg twice a day (before nap and before bed), and now it does seem to be making a difference. It's a lot easier to put her braces on even, because her ankles are a lot more flexible. Since she started taking it she's also made some exciting progress with the standing and walking. She will now attempt to take a step or two before she falls over when she balances independently, and on top of that she can also stand independently for longer than before - sometimes for almost 10 seconds! So that's exciting, and I don't know how much of that has to do with the valium, if anything, but as I said, the valium is definitely making her muscles more relaxed, which is great. We see Dr Brown again next week so we;ll talk to him about the dosage and how long she might be taking it, etc, because we still only want to give it to her for as short a time as possible.

Specialists...

What is it about medical specialists that makes them so impossible to get hold of?? The first time I tried to call Dr Brown (Avery's physical medicine guy) it happened by some miraculous allignment of the stars that not only did someone pick up the phone, but it just happened to be Dr Brown himself!! A modern day miracle! However, that was obviously the only time that that has or ever will happen. We just picked up Avery's valium prescription this morning, after about 3 weeks of trying to get in touch with somebody - ANYBODY - at Dr Brown's office to have them fax over the prescription to the pharmacy! Apparently it is office policy to never answer the phone, and to let it go to voicemail instead so that they can just call you back. Not only that, but on the voicemail message itself it warns that it will take 3 business days for them to return your call, but that seems to be rather optimistic. And then, when I finally did get a call back about the prescription, it happened to be during a rare moment when I didn't have my phone with me, so the woman left a message asking me to call back and leave a message for her to let her know which pharmacy to fax it to. So I tried, and went through the whole process of getting to Dr Brown's nurse's message line, and then couldn't even leave a message because their voicemail inbox was full!! Anyway, quite ridiculous, but probably not that unusual in the world of medical specialists I'm assuming. I also had a really hard time getting hold of Avery's neurosurgeon when we thought her shunt was malfunctioning a few months ago, and there are very few things as frustrating and stressful as not being able to reach your child's doctor when you're dealing with a potentially fatal problem! Of course, there's a whole system in place for moments like that, but having to call someone to have them page your doctor and then wait for what can seem like hours for him to call back, only to have a really hard time having a conversation with him because he can barely hear you out on the windy golf course he's on...yes, it's frustrating!

Valium Decision

Well, we've finally decided to give valium a try. I joined a few cerebral palsy related groups on facebook and asked for everyone to give me their opinions from experience, and a couple of people got back to me, and so that helped a lot. I find that it's so difficult to find the support and guidance we need, but things like Gabriel's Life and these groups on facebook really help. It's one thing having good doctors and professionals to guide you and give you advice, but I also really think that we, as parents of a child with serious medical conditions, need each other just as much. Doctor's know textbooks and have in-clinic experience with other patients, which is of course important, but other parents have the hands-on experience of living with and caring for their children in a way that only parents can, so we are able to support and advise each other in ways a doctor never could.
Anyway, the purpose of this post was jsut to say that we're going to be trying the valium. We've heard some good things and some bad things, but more parents who got back to me say that it's been a huge help in their child's life than not, so we're going to give it a shot. We can always stop if it starts affecting her in negative ways, but at this point we both agree that it's really important to do whatever we can before her bones and joints set too much - the sooner she walks independantly the better. Lisa, her physical therapist (the one we love and has been working with her since she was 4 months old) told us something the other day that made me take a step back and realise that we really need to be doing even more than we already are. Gabe asked her whether she thought Avery would ever walk completely normally, or whether you would always be able to tell that there was something wrong with her, and Lisa said that she would probably always have a little bit of a noticably crouched posture when she walked. I think I always assumed (at least since we were told that she would eventually be able to walk independently) that once she learned to walk you would never be able to tell that she had cerebral palsy because she would be walking normally, but apparently not. Of course, the fact that she will walk is miracle enough, but I don't want for her to have to live with any kind of struggle that she doesn't have to, so if there's anything we can be doing now to help her walk normally, then I want to do it. We're still waiting for the TheraTogs and her new walker, which I'm getting a little impatient for because she's gone backwards a little bit with some of her posture and stuff. Not much, but of course I feel that we can't afford any loss of progress. So, we're having a little trouble getting hold of her valium prescription, but as soon as we get it we'll start her on it and hopefully will be able to see some significant improvement in muscle tone, etc, pretty quickly.
It may be a little while before I post again, because I am still pregnant even though I felt sure this little boy would have arrived by now!! But he's taking his own sweet time and doesn't seem to mind how much agony he's putting me through!! Oh well.... sometime in the next week or so this will all be over and I will have a brand new little baby boy to show for it and the world will once again be a happy and accessible place!

Preschool Program

Well, this is great news! A couple of weeks ago we found out that Avery qualifies for the REACH preschool program! We're so excited about this, because after going to the meetings and hearing about how they help these children, I think it's going to do her the world of good! And not only that, but I think that she will love it too. To qualify for the program the child has to have a developmental delay in at least 2 areas. We went for her evaluation back in April, which took probably about an hour and a half. When we arrived, Avery went with two therapists (occupational and speech I think) to be evaluated, while I went with another lady who's job it was to ask me all sorts of questions about her to get some idea of what life at home is like and what she's capable of. Avery had a great time playing with the two ladies, and was gone for probabloy almost an hour, and of course they came in gushing about how sweet she is - she has such a knack for making people fall in love with her!
Anyway, the areas they graded her in are as follows: Gross motor, Fine motor, Cognitive, Language, Self-help, and Social/emotional. At the time of testing she was 26 months old, and this is how they graded her, with age-equivelence and delay percentages:

• Gross Motor: 10 months (62%)
• Fine Motor: 18 months (31%)
• Cognitive: 21 months (20%)
• Language: 24 months (8%)
• Self-help: 18 months (31%)
• Social/Emotional: 24 months (8%)

I was actually a little concerned that she wouldn't qualify for the program because while I knew for sure that she was way behind in gross motor skills since she can't walk, but I didn't know whether there would be enough of a delay in another area since she's so smart, and with this new baby arriving in August, I was really hoping and praying that she would get into the program so that she gets the extra help it will give her! I'm already so much more limited in how much I can do with her every day, because my pregnant body just won't let me get down on the floor with her or bend down to help her walk and stretch etc as much as I would like to, and I feel really bad about that, and then once the baby arrives I will be able to physically do all that stuff again, but I just won't be able to devote as much time to her therapy as I have in the past since I'll also have a newborn to care for. So I am thrilled that she'll be getting that help from preschool too!! I can't believe she's old enough to be leaving me for any amount of time though!!! But I am comforted by the thought that I know she will absolutely love it. She loves being around other children, and these days when I take her to nursery at church she's saying goodbye to me before I even put her down! She just loves it!

So anyway, we don't know yet exactly when she'll be starting or how many mornings a week it will be, and the next step is drawing up her Individual Education Plan (IEP), but I'm excited that at least know we know she will be going, and it will be great for her. Having other children around her who are walking will be such a great motivation for her!

We're still struggling with the valium question, so if there's anyone out there who can share their experiences and advice, please do!!! Thanks!

To Valium, or Not To Valium.....

Well, on Friday morning Avery and I took the long drive down to Radford to her Physical Medicine Doctor's new office. He used to come to Roanoke twice a month, but apparently there wasn't room at that office for him anymore, so now we have to drive an hour, which I know isn't that big of a deal, but when we've been so blessed to be within a five or ten minute drive from most of her medical appointments, an hour seems like a long time! Especially with gas prices being the way they are. I filled up with gas on Friday morning before we left, and with the appointment in Radford on Friday and then her hippotherapy out in the boonies on Monday, by Monday evening I had clocked almost 200 miles in the minivan... fun times!

But! That's not what I'm here to write about! So this appointment on Friday was with the Dr who had administered Avery's Botox back in November, and we just love him. He is a great doctor, and - just as importantly in my opinion - he's a great guy. He really listens to you and your concerns and observations, and he really takes the time to communicate and get to know you and make sure you completely understand what's going on - and that is a quality which is sadly lacking amongst many of these specialists I've discovered! So we really like him and trust him. Last time we saw him it was back in February, and at that point Avery was still not interested in walking and had to be really pushed to use her walker for even a couple of minutes. It seemed that the botox had begun to wear off, and he told us that we really needed to make sure we were doing her stretches faithfully to avoid having to do more botox and/or valium. Yep, valium - this is not a word which excites us. Anyway, Avery has actually made huge progress since February with regards to walking. We've been working really hard, and when the weather started getting nice I started taking her out for almost daily trips to various parks to help motivate her to walk, and I'd get her to walk to the park from the car. We put on her braces before we leave the house, and then once we get there I find a bench and put on her belt (I just use a soft belt of mine and put it around her chest and hold the end of it so that she's a little bit protected from falling) and put her in her walker, and most days she'll walk all the way to the park. It takes a long time - sometimes it can take almost 45 minutes to walk about 200 feet, especially if it's a nice day and everyone and their dog is out enjoying the weather - she gets distracted a lot! But the important thing is that she's been getting used to walking places. We've taken her to the mall to walk, and we've started getting to church early on Sundays so that she can walk in, and we've just been trying to make her understand that walking should be her primary mode of transportation - not crawling. It's hard work, but she's doing well, although there are of course still days when she just won't do it. And it's only been in the past couple of weeks that she's started to feel motivated to use her walker at home - before that it was like pulling teeth because she didn't understand why she should have to walk at home when she can get everywhere by crawling, which for her is much easier and much faster. So it's been really exciting that recently she's not only begun to be compliant when we ask her to walk at home, but she also occasionally even ASKS to use her walker! So anyway, on Friday they did the usual measurements and exercises to see how she's progressed since her last appointment, and it was pretty interesting. Her adductors (which were the ones which were botoxed) are actually tighter than they were last time, but she's actually doing more functionally. Dr Brown was saying that this must be because of how much we've been pushing and encouraging her, and she has motivation now which she just didn't have before, but he said that it's still really hard work for her, and you can see her fighting that muscle tone with every step she takes. So he wants us to start her on a baby dose of valium. We are very concerned about this, and he says we wouldn't be normal parents if we weren't concerned, but that we should really think about it seriously for her sake because he thinks the benefits would be more far-reaching than those of another round of botox. So we have the prescription sitting on our desk, and are now in the process of researching and weighing pros and cons and hoping and praying that we make the right decision, because of course we want to do the right thing, but of course with a drug like valium there are always risks. Dr Brown says though that he feels certain that it will make Avery's life easier and get her walking sooner because she won't be having to fight against her own muscles the way she does now. So I'm still not sure what we're going to do. But he also wrote a prescription for something called TheraTogs, which she has tried twice with her physical therapist, and they were WONDERFUL! I'm super excited to get those! The first time Lisa (PT) put them on her was the first time I've ever seen Avery walk with her feet pointing out instead of in - it was like a miracle! So I am really excited to get those for her, and maybe we'll wait to see how she does with those before we make a decision about the valium. I don't know. We're going back to see Dr Brown in 3 months. We may need to change the appointment since that's when this baby's due to be born. Actually, he was saying that was another reason that he would choose valium over botox because the botox would require intensive stretching and exercising again to be effective, and since I'm getting less and less able to do that stuff with her as I get bigger and more pregnant (which is true - I've barely been able to pick her up without killing my back recently, and I'm just in pain all the time), but the valium would do it's job whether I stretch her every day or not, basically. So, you know, if anyone's had an experience with any of this, I'd love some opinions....!!

Scare

Well, first off I need to apologise for taking so long to post on here again! We found out in December that I'm pregnant again, which is wonderful news and we're so excited, but I was practically dead to the world during the first trimester! So I'm way behind on everything that involves doing anything - yes, even if it is just sitting at the computer and typing - that's how bad I felt! It's a good thing I know how worth it these babies are!

Anyway, I have decided that I need to not only catch up with all of Avery's history, but I also need to keep on top of what's happening now. So this post is about stuff that happened this week.

For a couple of weeks Avery's been acting more tired and needy than usual - she's even taken to wanting to take a rest in the morning in addition to her regular nap in the afternoon. At nights she's been waking up quite a bit, so at first I thought that maybe she was getting those last 4 molars, but I haven't been able to see or feel any lumps or anything on her gums, so I was a little concerned about it because I know that tiredness and lethargy can be warning signs for shunt problems. But since that was the only thing that was different I tried not to make too big of a deal of it. Then at the beginning of this week she started losing her appetite as well, and was eating hardly anything at meal times. Again, this sometimes happens when she's teething because I suppose chewing just doesn't feel good on sore gums, but I still saw no physical evidence on her gums that there were any teeth trying to push through, and so it added to my concern a little. By Wednesday she hardly even wanted to drink her milk, which was weird, so again I was worried but tried not to make a big deal of it. By Thursday though things were pretty much the same - she was very tired, and rested in her bed in the morning and then took another extra long nap (about 3.5 hours) in the afternoon, and then that night, since she had once again hardly eaten anything all day, I decided to give her some pediasure before bed just to make sure that she wasn't going to bed hungry. Whenever she gets a cold her stomach gets sensitive to milk and so she's had pediasure lots of times before and she's always liked it and it's always gone down easily. So she drank most of it, and then I put her down to bed, and a couple of minutes later she started crying and by the time I went to check on her she was halfway out of bed (she sleeps in a twin bed now) and she had thrown up all over the foot of the bed and the floor. Gabe took her downstairs and got her cleaned up while I pulled out the carpet cleaner and got to work on the mess in her room, and by the time I had finished stripping the bed and cleaning the carpet, she had thrown up again all over her Daddy. Gabe took her upstairs to have a bath (the second one that day) and I got to work on the mess downstairs. Anyway, it wasn't long after that that she threw up again, although by this time of course there was really no food left in her stomach so she was just throwing up bile and mucus. So now we had a little girl who had been acting tired and lethargic for a few days, had lost her appetite, was throwing up, and was screaming that high-pitched little scream we hadn't heard since she was a brand new little newborn before her shunt was put in. So of course we were worried, since these are all possible symptoms of shunt malfunction. So I quickly packed up a bag with extra shirts for all of us and some towels and Avery's bedtime cuddly toys, and we headed off to the ER. She threw up again while the nurse was looking at her, so they took us straight threw to a room in the pediatric section of the ER.

I don't need to go into all the details of our visit in the ER, but they gave her some zofran for the vomitting, asked us a billion questions repeadtedly, took x-rays of her head and lungs to check for pnuemonia, took blood and put an IV in her arm, took urine with a catheter (her least favourite part) to check for a urinary tract infection and did CT scans to check the size of her ventricles. It was a long night. She finally stopped vomitting after the zofran, which was wonderful, because by that time she had thrown up probably 8 times or so, and was quite dehydrated. Her lungs were fine, and she didn't have a UTI, but her white blood count was more than double what it should have been, so they thought she must be fighting of an infection of some kind. So finally after midnight sometime they were saying that since they had ruled out a bunch of the obvious choices, it may well be a problem with her shunts, so they started getting ready to check us into the pediatric ward for the night. I sent Gabe home to sleep, and by 3:45 or so Avery and I were finally settled into our little room up on the 11th floor, and she had a new IV drip to try to replace some of the fluids she had lost. She had managed to get a little sleep down in the ER, but not much, so she fell asleep very quickly, and I got some sleep on the couch next to her bed. At about 7:30am a nurse came in to take some more blood, and Avery woke up very sweetly and watched her stick the needle in her arm and take the blood, but she didn't cry at all, sweet thing that she is. The doctor from neurology (A lady I haven't met before) came up to see her and said that since her ventricles didn't look enlarged, she could still look up with her eyes, and she was acting a little more like herself that morning, she didn't feel a need to tap her shunt to check for an infection or anything, so that was fine. In my sleep-deprived haze (magnified by the fact that I'm extra tired because of this pregnancy!), I didn't think to ask her to check her shunt setting, since it had inexplicably changed its setting once before. That didn't occur to me til the following morning. Anyway, after that breakfast came and Avery had 2 bites of rice krispies and a sip of grape juice before she decided she was done. The group of pediatric doctors came in and said that her white blood count had dropped back down, so they didn't know what was wrong with her, but it looked like she was getting better, so they'd send us home. They said she was dehydrated and that on its own can cause vomitting, etc, although of course she wasn't dehydrated before she started vomitting, but what do I know??! One of the doctors came back a while later and said that she wanted to just keep her in til after lunch to make sure she was eating and keeping food down, but then not long after that the nurses came in to discharge her and we were home by 11:30am with a diagnosis of "vomitting" and instructions to give her a normal diet and keep her hydrated. I bathed her and tried to give her some lunch, but all she ate was a handful of goldfish and a sip of water, and then she was too tired to fall asleep, so I took her for a drive and she was asleep before we reached the end of our road. She slept for two hours in the car (I got some chili and a baked potato from Wendy's and ate it in my driveway, and then I fell asleep in the front seat while Avery slept! Everybody needs to sleep in their driveway once, right??) I woke her up a little after 4pm because I wanted her to be able to go to bed at her regular bedtime of 7pm. We drove to Kroger to buy some food I thought she might like, and I also got her some mineral oil because the pediatric doctor had recommended it for her constipation (we're trying to avoid meds for that), since she hadn't pooped since Wednesday and the dehyration was probably making it worse, and severe constipation can cause temporary shunt drainage problems, although Avery's neurosurgeon doesn't agree with that. On the way home Avery vomitted AGAIN - a lot. I called Gabe and he said to call her PCP, which I tried to do, but they had just closed (it was just after 4:30pm), so I called to doctor on call and she said it was probably a stomach virus so don't give her food but make sure she drinks lots of fluids. So we went home again, got her cleaned up, and then headed back to Kroger to buy some pedialyte. I managed to get hold of the PA who had looked after us in the ER (she just happened to be my friend's sister!), and she said that yes, it probably was a stomach virus, and said to call her back later if she was still vomitting and she'd get her a prescription for zofran. Avery wasn't having anything to do with the fluids we were trying to offer her though, and whenever we asked her where she hurt, she pointed to her eyes, so she must have had a killer headache. Again, kind of scary when your shunted child has a headache. ANYWAY! Sorry, I know this is taking a long time. Avery went to bed at 7 pm, and she slept all night til 7:30am on Saturday morning, and then she came into our bed and fell asleep again at 8am and slept til 9:30 or so, and then she got up and drank some pedialyte and sat on my lap on the couch and watched cartoons for about 40 minutes. She didn't want to get off my lap at all, and she just sat there very quietly and watched TV. Then she said she was tired and she went back to bed for another 3.5 hours, during which time her bedroom door was open and we moved our brand new king size bed upstairs into our room, which involved lots of noise, but she slept right through it, which is not like her. While she slept I managed to get hold of her neurosurgeon, since we were still very worried about her because she was sounding more and more like a little boy we had read about a few weeks before. Very sad story. (That is a wonderful sight by the way, I highly recommend becoming a member and making good use of the forums and information - it's so good to be connected to people who can help you through common experiences) By the time she woke up she had slept for 18 out of the past 24 hours. Her neurosurgeon was worried about her, and said that if she didn't show any improvement that day to take her to the ER again and have them do another CT scan to see if there had been any change in her ventricles since Thursday. If we didn't go to the ER that day, then we should take her in to see him at the hospital the following morning and he would check her shunt setting. Saturday afternoon, we ran out for about 30 minutes to buy some sheets for our bed, and Avery slouched in her stroller the whole time as though she didn't even have enough energy to sit up properly. After we got home her tummy was botering her, and she kept on straining as though she really needed to poop, so I kept on putting her on the potty, and she kept on pushing but nothing came out and she was getting really upset. Finally we put her on the potty again and she pushed and screamed and finally she managed to push out a couple of marble sized pieces and then a whole bunch of diarrhea, and after that she actually felt a lot better. She was still very tired, but she was acting a lot more like herself. There was no throwing up on Saturday at all, and we started feeling a little less worried. We still took her to see the neurosurgeon on Sunday morning though, and he checked her shunt and it hadn't changed, so then we really did feel much better. Sunday morning she started crawling around again and playing, and was generally much happier and more comfortable, although she still suggested that her head hurt when we asked her. She ate some little bits of bland food that day and had a few sips of water and/or pedialyte everynow and then. That night she threw up again though, so on Monday morning I took her to see her PCP and he diagnosed her with a gastrointestinal virus, and said that it would probably stick around til the end of the week. So yay for gastrointestinal viruses!!!! I would take one of those over a shunt malfunction ANY day of the week!!!

Blessedly, Avery does not get sick very often, besides the odd unavoidable cold. I don't know how I would cope if she got sick more often than she does, because the problem with all the signs of shunt malfunction is that they are also all symptoms of other "normal" sicknesses, so I think I'll always be worried that there's something serious wrong every time she gets sick! While I am not wishing away her toddler-hood, I cannot wait until she can more clearly tell us where she's hurting and what kind of pain it is, because that will make it so much easier to know whether or not we should be really worried! My goodness, I feel for all those parents of children who have to go through multiple shunt revisions, etc, because I cannot imagine how I would sope with the stress and worry of that. Thankfully, this time it is just a stomach virus. I hope and pray that we won't have to go throught the trauma of shunt problems, and that if/when she does need a revision or replacement, we will be able to catch it before it does any damage. May that be years and years down the line.

While we were still in the ER, they did some x-rays, and the technician took her puppy and did an x-ray of it too :) I thought it was cute :)