Avery's first walker

Here's Avery wearing her first pair of AFOs using her first ever walker! It wasn't actually her walker - we were borrowing it from her PT while we were waiting for her own walker to arrive, which was a posterior walker. She was about 20 months old in this video.

Dandy Walker and Neurosurgeon problems

Well, I haven't posted for a little while, but I'm too tired to write a proper post, so I'm just going to copy an old post from my other blog about Avery's hydrocephalus and some issues we were having with her neurosurgeon from when she was about 6 months old. So here it is:

I don't think I mentioned before that Avery's neurosurgeon thinks that the cause of her hydrocephalus is something called Dandy Walker Syndrome although I don't think that is known for sure yet. The more I read on it myself, the more I think that she probably doesn't have it. I don't know, from what I've read it sounds as though Dandy Walker is usually associated with other defects and malformations with the face, heart, spine, fingers, etc etc, and Avery doesn't seem to have anything else wrong with her. The only thing that may or not be associated with something like that would be her eye thing, if she does turn out to have Duanes syndrome or something. But other than that... And also, it sounds like Dandy walker usually causes an partial or complete absence of the cerebellar vermis, which is that area between the two hemispheres of the brain, and unless I'm mistaken because I'm not a brain expert, her MRIs made it look like there was nothing wrong there - I'm sure I saw a clear divide between, and I've checked a couple of times. Am I just clinging to foolish hopes? I don't think so, but maybe I am. See, it's just that the presence of Dandy Walker would be another thing that would decrease her chances of developing normally, but as I've said before, she seems to be so normal!!! She's pretty much on track with everything the books say she should be doing. And I do a lot of reading about that sort of thing.That's actually been another thing that's bothered me with her neurosurgeon. When we've questioned the care she's getting, they say, "Well, it's not an exact science you see, and we're pretty much going on how you say she's doing, and if you say she's doing fine then that means we're doing our job", and sometimes when I think about that it really bothers me because here I am, totally inexperienced when it comes to babies, and while I am doing everything I can to learn everything I need to know, and am reading everything I can get my hands on, I am not the one with all the years of training.... they are. Shouldn't they be capable of keeping a better track of her progress and the reliability and effectiveness of her shunt? I just have a really hard time trusting that they're doing what's best for her. When her neurosurgeon doesn't even take the time to look at her chart before he walks in the room to check whether she's a boy or a girl, that bothers me. And when we're constantly being asked, "Now, what was her shunt set at...?" because they don't know, that bothers me. And when, after being told that an MRI is very likely to change the setting in her kind of shunt, they try to cancel our follow up appointment after her MRI, that really bothers me. It was only because we had the hospital call the doctor's office and say "shouldn't she be coming in to have her shunt checked after her MRI" that they said, "Oh, well, okay, I guess she can come on in after she's done" that they actually saw her. And her setting had changed. At least, they think it had, he said "Well, I can't remember what it was set at before, but lets see how she does with it at this setting."Do you see why I have so little confidence in Avery's neurosurgeon? This is why we took her to UVa for a second opinion. The doctor up at UVa was much nicer, and much more helpful and responsive to our questions and concerns. He said that with regards to what's actually been done for Avery, from what he can see he probably would have been doing the same things, so that made us feel a little better. But I think we'll take her up there again once she's had her second MRI in a couple of months to see if he's still in agreement with her current doctor.

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.

Avery's First Two Days in The World

It wasn't until about 7pm that night that we were allowed to go upstairs to the NICU to see our little girl. With a lot of help I was finally able to get out of bed and into a wheelchair and my sweet husband wheeled me up to the 9th floor, IV in tow, and we pushed the button and waited for them to let us in. She was beautiful.

As you can see, she had all kinds of moniters and devices strapped up to her, but she was strong enough that she didn't need to be enclosed in an incubater, and we were able to touch her. As you can see from the next picture, she was also strong enough to kick and scream and let us know that she wasn't happy in this frightening new world she had been forced into!

Since I was still rather drugged and dazed after the c-section, my memory isn't great when it comes to the order of things in those first few days, but I think it was that night that the neurosurgeon came to our room to talk to us about the surgery Avery would be undergoing. She was scheduled to have her shunt placed at about 7:30am on Thursday morning. Poor baby, what a welcome to the world!

For those of you who may not know much about hydrocephalus or what a shunt is, let me explain it the way I understand it. Congenital hydrocephalus can be caused by many different things - in Avery's case it appears that she had a cyst in her fourth ventricle and this was what caused the blockage which prevented the cerebrospinal fluid (CSF) from draining properly from her brain. This cause of hydrocephalus is called the Dandy Walker Varient. Without any treatment, the pressure on her brain would have continued to build up, and her brain tissue would have been more and more squashed against her skull causing extensive damage, and as her skull began to harden and fuse together after birth, the danger would have been even greater. Basically, if left untreated, this condition would have killed my daughter and/or left her with no quality of life to speak of. Even fifty years ago this would have been her prognosis, and we would have lost our first child. In the past 50 years or so though, medical advances have created a chance for these precious babies to not only survive, but also to thrive. Less than 48 hous after my sweet girl was born into the world, she would be undergoing surgery to have a Ventriculoperitoneal shunt (or VP shunt) placed in her brain, which was designed to relieve the intracranial pressure and allow the CSF to drain into her abdominal cavity where it would be absorbed by her body. The doctor explained that the site which had been chosen for her shunt was just behind her right ear. A hole would be bored into her skull to allow the tube to be inserted and pushed through her brain tissue until it reached the swollen ventricles, then the shunt valve would be secured under her scalp and the tube would continue down under her scalp, down the side of her neck, over her collar bone and chest and into her abdomen. The hardware would all be internal, and the only incisions would be the large incision on her scalp and a small incision on her tummy.

Of course, preparing for surgery of any kind is always scary, but this was terrifying. I had to push from my mind all the possible terrible things that could possibly happen, and put my faith in God and the hands that would be performing the surgery, and that kept me sane.

The plan was to not give Avery any nourishment until after her surgery, but by the time we got up to see her on Wednesday morning her nurse said that she had just been so hungry that she had got doctor's permission to prepare a little formula for her, and I was able to hold my little girl for the first time and give her her first bottle. They needed to moniter how mush she drank, and since I hadn't been able to pump more than a couple of drops of breastmilk yet, I was fine with her having formula.

I was just in heaven being able to hold her for the first time! The pillow on my lap helped to protect my incision a little, but it still hurt quite a bit to hold her, but I didn't tell anyone because I didn't want anyone to take her away!! She was more than worth the discomfort! I couldn't keep my eyes off her!

First Photos

It's a girl!!

Daddy's first touch

Big girl! (But so tiny....)

First Kiss

First Family Picture