It gets even better!!

So, since writing that post this morning, Avery went to physical therapy and did something else really spectacular. I tell you, this girl is an absolute miracle.
So we were working on independent standing and stepping. Lisa was helping her learn how to get up to standing by herself, and then once she was up and balancing she was having her take 2 steps towards me to put some pieces in a puzzle. Avery was doing what she normally does - she balances, then she takes a couple of steps while falling towards me, if you can picture that. So she did that, and then I helped her stand up again and Lisa gave her the puzzle piece and I held up the puzzle. Avery must have though the puzzle was too far away, so without even any prompting, she took two little steps closer to me and then stopped, still standing!!

Without any help!!

My baby took her first completely independent steps!!!!!!

Lisa and I both about cried!

Big achievement

Okay, so maybe I haven't decided for sure about whether to continue this blog or not...I keep changing my mind...maybe it will be a gradual thing....! I just had to share something Avery did yesterday.
So Avery started hippotherapy again yesterday. It was supposed to start last week but it got canceled because of the cold wind and rain. Yesterday it was just raining, and they have a covered area, so we were still able to go! Avery was so excited! Anyway, Lisa is "testing" all her kids throughout the course of the 10 weeks of hippotherapy so that she can show that it really does help, and what she decided to do with Avery was to test her before and after each session to see how long she could stand up unassisted. So that's what we did when we first got there yesterday. Avery stood up on the mat, and Lisa sat behind her and handed her the pieces for this puzzle which I was holding in front of her.
Of course, we were expecting her to stand up for maybe a minute before she lost her balance. Her record up til then was almost 2 minutes, and that had only happened maybe 2 or 3 times. So Lisa started the stop watch and started handing Avery the puzzle pieces, and I held the puzzle and made sure she wasn't holding onto the puzzle for support. A minute came and went, and she was still standing very steadily. She finished the puzzle. She took out all the pieces one at a time and gave them back to Lisa. She finished the puzzle again. She started taking the pieces out again, and finally lost her balance and fell backwards onto Lisa's lap after

6 minutes 14 seconds!!!!

It was amazing!

So of course we thought that would completely throw off Lisa's testing, because she'd never even come close to standing alone for that long before, so she wouldn't be able to stand for nearly that long after hippotherapy! But we were wrong! After 30 minutes of riding the horse, we went back to the mat and the puzzle, and this time, Avery stood for...

7 minutes 4 seconds

In case you weren't certain before, my daughter is absolutely amazing.

Neurosurgeon appointment

Yesterday Avery had an appointment with her neurosurgeon, which, I have to admit, I've been quite looking forward to! Last time we saw him was almost a year ago after we had a little scare at the hospital which, blessedly, turned out to be nothing! So it was fun to be able to "show her off" to him and some of the ladies at the office who remembered her from last time, because of course she's grown a lot since the last time they all saw her. I'm so proud of her!

While we were waiting for the doctor to come in, Avery found on of those reflex hammer things (no idea what they're called) on the table next to her, so she decided she needed to "measure" her legs! So she tapped each knee twice, just like the doctor does it, and said "Okay, good!", so she was obviously pleased with what she discovered :) She also then did her feet and her hands, as well as each of the fingers on her left hand :) Ha! (camera phone, sorry!)
So obviously, this was just a check up, so there really isn't much new to report, but I did get a couple of things I've been wanting to get because I lost it, namely, her head circumference chart and a picture from her last MRI. I still have the films from the MRI she had when she was 2 months old, but they changed the system for the one she had last year so that it was all done on the computer, so I only had one single printed picture from that one, and it got lost. :( But here they are!
This first one was done on 04/19/2006, when Avery was 2 months and 5 days old - 2 months and 3 days since her shunt surgery. The light gray area is the CSF in her ventricles, and the darker stuff around it is her brain tissue. I tell you, every time I look at these pictures I am amazed all over again at the miracle that is my daughter. The black dent on the side is distortion caused by her magnetic shunt valve.
Here is what her brain looked like 2 years later! This was done on 02/28/2008 when Avery (and her shunt!) was just over 2 years old. Pretty amazing, right?? In this one her ventricles are black and her brain tissue gray, and you can see the amazing difference in how much the ventricles have shrunk and how much the brain has expanded!
As for her head circumference, you can see from the chart (you might need to click on it to see it properly) that her head size is well within normal range now, which is wonderful! She's gone from more than 5cm above the 97th percentile at birth (43.5cm) to below 90th percentile today at 36 months (50cm) Hooray for Avery!


All in all, it was a good appointment, and Dr Simonds was pleased with how much she's grown and how well she's doing. They had a very fun little conversation :) He did recommend we see a pediatric developmental doctor too, so they made that appointment for us before we left. The earliest available date is...AUGUST 21st!!! More than 5 months away! She's the only one in the area.

Options

This morning at PT I was talking to Avery's therapist about different doctors and treatment options and all of that, because sometimes (okay, a lot of times) I worry that I'm missing something, or that there are more things I could and should be doing for Avery. I've been thinking about it a lot. A lot of my blog buddies seem to have taken the stem cell infusion route, and to be honest, since Avery's diagnosis didn't occur until two weeks before she was born, this was something I hadn't heard anything about when she was born, so we never kept her cord blood, so that wasn't an option for her at the time. I felt bad about this, because although I know the research is limited with the whole stem cell thing, I do wish we would have known about it at the time, because even if it hadn't done anything to help her, it certainly wouldn't have done any harm! I've stopped feeling bad about this though, because as I said, it couldn't be helped - in all the research I did during the short time between Avery's diagnosis and birth, the whole stem cell thing never came up, so I didn't know about it, and I've come to accept that if I was meant to do it, I would have been inspired in my research to find information about it. For us, it apparently wasn't meant to be.
Anyway. The reason I've been thinking about this recently is that Avery isn't currently seeing a neurologist. We're seeing her neurosurgeon on Thursday of this week, which I'm sort of excited about because we haven't seen him for almost a year, which is the longest we've ever gone! But Avery used to see a developmental neurologist until he moved to Idaho, and then we started seeing Dr Brown instead who is a wonderful physical medicine doctor. We love him, but I worry that we should be seeing someone else as well as him...I don't know. I was asking Lisa (PT) about what she thought, since she deals with other kids like Avery and knows what sorts of doctors they all see, etc. We were talking a little about the orthopedic doctor we took Avery to almost 2 years ago - he was actually the doctor who officially diagnosed Avery with cerebral palsy. We got her original prescription for her walker from him, but he wouldn't write a prescription for AFOs for her because he didn't believe that braces actually helped. I'm not sure what he would have had us do instead. Lisa was saying that there is now another pediatric orthopedist in town, but that she's pretty sure that he would never prescribe AFOs either. She was saying that she's also quite certain that if we took Avery to an orthopedic surgeon right now, they would recommend some kind of surgery, such as tendon lengthening. She says that as a physical therapist she has mixed feeling about tendon lengthening. *sigh* why can't everything be black and white?? I want to do what is best for my little girl, but how am I supposed to know that what I'm doing is what's best, and not just what one person thinks might be best?
Anyway. Sorry - a rambling sort of post, I'm just in a little bit of a quiet panic because I worry that I'm not doing everything Avery needs me to do.
I do remember that back before Avery got botox in her adductors back in November 2007, Dr Brown seemed to think that she would learn to walk independently during the several months of the botox's effectiveness, and that once that happened she would be using those muscles so well that she wouldn't need to get botox again. Obviously that didn't happen, and her poor little muscles just keep on getting tighter and her tone keeps on getting worse, even though she's working harder and harder, so of course I worry about her. She's having to fight against her body more and more as time goes by, but shouldn't it surely be getting easier?! One of the evidences of this is the fact that her constipation has been getting progressively worse and harder to manage. It's directly related to the muscle tone and tightness of her legs and the other muscles that are affected by her CP, because of course this kind of constipation (neurogenic constipation - I only recently learnt the name for it!) is a reslut of the intestinal muscles behaving in the same way as other muscles affected by CP. We used to be able to control it with an abundance of prunes/flaxseed/apple juice/water in her diet, but it's been getting worse and worse and we have to give her miralax now. I hate having to medicate her in any way, but we just can't control the problem without it anymore. Dr Brown prescribed colace, but have you ever tasted that stuff?? It's foul, and Avery screamed every time I tried to give it to her, and half of it dribbled out of her mouth in her distress, and even after all that she still wasn't going any more often, and even when she did there was still blood every time I wiped. I feel so bad for her. *sigh* What to do?

The Walking Game

Avery would like to introduce you to a little game Daddy came up with called The Walking Game. She LOVES it and will ask to play it on a regular basis. Of course, if you ask her how she plays the walking game, she would probably tell you that you play it by eating chocolate, but there is more to it than that :) And this morning's game was actually played with pieces of granola bar, not chocolate!
Here's how you play:

Walking with crutches

I just wanted you to see how much progress Avery has made with her crutches in the last two months. I need to get soem better pictures, but these will have to do for now.
This was Avery at the end of November. As you can see, she still needed lots of hands-on help to use her crutches.

This was her a couple of weeks ago. She wasn't in the mood to use her crutches that day, so we could only get her to use one and hold daddy's hand, but she can use them all be herself now! And you can see the difference in posture too.

Here she's using one crutch and holding the rail with her other hand. Little Miss Independent! She's doing so well! In her weekly PT session she's even been working on using them to go up and down stairs (which is too scary to watch - I don't know if I'll ever be able to let her do that by herself!!!). Also, she's been working on sitting in a chair and picking her crutches up from the floor, putting them on, and standing up all by herself, and has been doing marvellously at it!! She's even managed to get up off the floor with them with minimal assistance! She is one amazing little girl :) I'll try to get more pictures of all this wonderful stuff she's been doing!

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 :)

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.

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!

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.

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....!!

Early Intervention

So I've decided to start a new thing - Flashback Fridays! Since I only started this blog last November when Avery was already 20 months old, there is a lot I haven't talked about. SO I'm going to try and remedy that and make an effort to tell her whole story in pieces. So while I probably won't be good enough to do this every Friday, I will try to me Flashback Fridays a fairly regular thing :)
Today I think I'll talk about how Avery got into the Early Intervention program.
During the 10 days following Avery's birth when she was still in the hospital, she was visited by seemingly countless doctors, specialists and therapists. One of these was a physical therapist named Angela-something. The day Avery was released was a bit of a chaotic and exciting blur because I got a call as I was in the hospital elevator with my Mother on our way up to see Avery, and they said that Avery was going to be released that day, and then there were about a billion people who needed to talk to me and/or make me sign something, one of whom was this physical therapist. I remember thinking it was a little ridiculous that Avery had been seen by a physical therapist, because how much could a newborn baby be expected to be capable of?? Anyway, she explained that Avery's muscle tone didn't seem quite right, and that she wasn't holding her body as well as she should be when she was picked up. Again, I thought this was silly at the time, but since having my son 2 months ago, I am now more aware of how weak and floppy Avery's sweet little body really was when she was born, because my son just seems to be so strong, especially his legs, and I know Avery's legs were never like that. So at the time, not knowing any better, I was skeptical, but listened to her anyway, and she told me that someone from Early Intervention would be contacting us to arrange coming out to our house to evaluate Avery's physical state and decide how much help, if any, she might need. So at the end of March 2006, when Avery was about 6 weeks old, Avery's "team" came out to see her, and established it would probably be beneficial for her if she got physical therapy. Her gross motor skills were the main reason for this, because as far as they could see during the evaluation, she was still working at pretty much a newborn level. Poor baby, she had such a thin little neck and overly heavy head, it was extremely frustrating for her to be on her tummy because although she was trying really hard, she could hardly move her head at all. Understandably. So they made a list of goals for her and target dates for when they hoped for her to achieve them. So this was how that looked-

1. 05/29/06 Lift her head for 15 seconds in midline while on tummy twice a day
2. 07/29/06 Roll in both directions (back->tummy, tummy->back)
3. 09/29/06 Sit unsupported (placed in sitting) 3 times a day for 1 minute each time
4. 01/29/06 Get out of sitting to both sides independently
5. 12/29/06 Get into sitting using arms to push up, to both sides twice a day
6. 01/29/07 Get onto hands and knees for 20 seconds three times a day
7. 03/29/07 Crawl 25 feet 3 times a day

Avery started having twice monthly visits from her physical therapist. I don't remember the first girl's name, but after a couple of months we were given a new PT, Lisa, who is still Avery's physical therapist today, although she works at the hospital these days and not for Early Intervention. We love her. After a few months, once Avery was old enough to be awake and active for longer periods of time, we started having the PT sessions every week. Sometimes she loved it and was cooperative, and other times she hated it, but Lisa has always been really great at getting the most out of her, and Avery just loves her. Of the goals listed above, Avery reached the first couple not too far behind schedule, although I remember rolling was not a fun thing for her to learn. #6 took a long time...in fact, although Avery was able to stay sitting for 30 seconds or so if placed in that position well before she was a year old, she wasn't able to get into the sitting postion by herself until she started crawling at about 14 months, and even then it was by pushing back from crawling into a W position. She still has a strong preference for that position, which is not good for her. She can now sit cross-legged or with her legs straight in front of her, but she doesn't like it, and her back is still quite curved under in those positions, giving her quite poor posture.