My Hydrocephalus Baby

She lives!!

2009-09-21T20:54:00.002-04:00

So I got a couple of messages from people wondering where I had disappeared to...
I am still blogging!
I'm just not doing it here anymore...
I think eventually when I have the time I might merge all of the posts from this blog into my other blog and then maybe delete this one, or maybe not, but in either case, I am now just blogging on my other blog - Andersen Family Journal
It just got to the point where I couldn't decide whether to write about something on this blog or my other one, so I decided that I should only have one blog for my whole little family, instead of one for Avery and one for the rest of us including Avery!
So if you have been waiting around for me to post something here, please follow me over to my other blog! I'd love to hear from you there!
Thanks!

Drama

2009-06-19T01:35:00.002-04:00

We're going through some tough times with Avery right now - she's pretty much been in the hospital since Saturday, and we still don't really know what's wrong. I've been texting updates to my facebook profile, so if any of you are on facebook, you can befriend me and keep up with Avery's status there. I'm also trying to update my other blog as often as possible, but that happens less frequently since I only have access to a computer when I'm at home.

You should read this, you'll like it :)

2009-04-16T19:41:00.002-04:00

My husband emailed me an article about a girl with hydrocephalus and cerebral palsy today. I'm keeping a copy of it, I think this girl is inspirational, and she gives me high hopes for Avery :)
Find the whole article here.

"It really bugged me when I was little because I couldn't run as fast as the other kids or do some of the things that they did," Allen said. "One of the biggest effects of cerebral palsy is balance. When we were little, someone brought in a balance beam that was just an inch off the ground, and it was easy for the other kids, but I had to step on the ground a couple dozen times. I've had to wear glasses my entire life and I've always been picked on a little bit. But I've learned to cope."

Encouraged by her mother and older brother, Ray, Allen began running cross country and track as a seventh-grader at Memorial Middle School. She had to walk part of the course to complete her first cross country race, but she's been hooked on competitive running ever since.

"That sparked my interest to get strong enough to run a whole race, and I've never had to walk another race again," Allen said. "After I got good enough to run the whole race, my goal has always been to get out of last place, and that's something I've clung to my whole running career."

It gets even better!!

2009-04-03T13:39:00.003-04:00

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

2009-04-03T09:35:00.004-04:00

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.

Busy Busy

2009-04-01T20:01:00.003-04:00

I just thought I'd let you all know why I've been such a slacker with my blogs recently! We made an offer on a house on Friday! We've been looking for a few weeks, and it's been taking up pretty much all our time, and now that we've made an offer, we've been spending all our time organising and packing up boxes! It's pretty exciting! The house we are in right now we've been renting from Gabe's uncle, and although its been such a blessing to have it, it's just not going to work anymore, especially if we want to keep any friendly feelings towards each other. But the new house (I'm trying so hard not to think of it as ours until our offer has been accepted...!) is great! It was built in 1962, and I don't think it's been redecorated since then (!!!) but I think it's going to be perfect for us! And it's a split level, so it will be wonderfully accessible to Avery since there are only 5 or 6 steps between levels. I love it, but I'm not going to talk about it anymore until I know it's ours....
Another thing I've been debating about for a while, and have finally come to a decision to is this: I am going to stop updating this blog and just use my other blog for new news from now on. The reason for that is this: it's getting more difficult to decide which blog I should post some things to, and so I keep on just not blogging about them at all! I will still be posting to this blog, but it will only be to catch up, since there's a lot of Avery's first 3 years of medical history which I haven't yet blogged about, because I'm a slacker. So I would like to invite all of you to my other blog to keep up with Avery, but please keep an eye on this blog too as I try to fill in all the blanks! And please forgive me if I don't post much for the next little while! We're hoping to close on this house by the end of April (if we get it....I hope!!!), and we'll need to do some work on it before we can move in, so we'll probably be very busy for the next little while!! But I will still try to post!

And the winner is....

2009-03-23T11:16:00.002-04:00

...Audrey Sue!! Woohoo! Yep, out of all the hundreds of entries, you beat the odds and won :) Hahaha! So just send me an email with your address and I'll send off you super fun prizes :)

Funniest picture!

2009-03-19T20:29:00.003-04:00

It had been a few days since I'd taken the photos off my camera, so I sat down to do it this morning, and came across this picture which Gabe must have taken when he gave Avery her bath the other night. It made me laugh out loud so I thought I'd share :)

My favourite part is how the look on her face and her crazy hair are completely mismatched!!

Ha ha ha ha!!

Sick sick sick!!

2009-03-16T21:38:00.004-04:00

The good news is that Avery is pretty much better now. Finally! She went back to preschool today, and was very happy, although she was EXHAUSTED when she got home! Brogan and I have it now though, Brogan got it on Wednesday, and I got it on Saturday, although it doesn't seem to be affecting my stomach too much, which is a wonderful thing! A little bit of nausea, but that's it, mostly I just have it in my head and ears and nose...you know, that lovely sinus pressure headache that never goes away and the blocked nose that will not un-block no matter how much you blow....ah, lovely.
Oh well. This too shall pass :) haha
Avery was supposed to have an appointment with her ophthalmologist (I can only spell it with the help of spell check :D) last week, but because she was so sick I had to reschedule it. That's okay though, because I'm sure it would have been another appointment of "Well, it still hasn't plateaued, so lets just keep on patching 2 to 3 hours every day, and I'll see you back in 3 months." Not that that gets old or anything... I really like her ophthalmologist, but Roanoke really needs to get themselves another pediatric eye doctor (I'm not going to type that word any more today!!!) because the waiting time at his office is always ridiculous. I always try to get the earliest appointment time possible, and I still have to wait. Last time Avery's appointment was at 9:30am, which is still quite early in the morning, but they were already running about 45 minutes late! So we sat in the waiting room for 45 minutes, and then it was another 20 minute wait in the exam room. Sort of ridiculous. But the only time we've taken her for a second opinion for her eyes, we had to drive all the way to Charlottesville which is two hours from here.

Okay now people, I've only had one person enter my giveaway!! What's the deal?? Do I need to add some chocolate to the pot or something?? I'll do it! I'll throw in a bar of hershey's milk chocolate, as well as the gorgeous hand-made doll and the card, and all you have to do to enter is leave a comment on this post. Go on, do it! It'll be completely worth it!

Pssst... If you're like me and cannot even bear the smell of hershey's milk chocolate, let alone the taste, let me know and I'll replace it with a much tastier chocolate :) REAL chocolate!!
Anyway. That's it. Please enter my giveaway! I don't even mind if you live on the other side of the world or anything ;)

My first GIVEAWAY!

2009-03-13T08:44:00.013-04:00

So I've never done one of these before, and it looks like fun, so here it is - my very own super duper cool GIVEAWAY! Woohoo! Aren't you excited?!
The prizes! My mother has kindly agreed to donate two beautiful items from her etsy shop. She makes gorgeous dolls and cards, and is donating one of each, so here they are:
This is one of her "rag dolls", although I think they're rather too beautiful to be called rag dolls! Click here to see more pictures of and information on this gorgeous doll.

The second item is this lovely card which measures about 5x7, and says "Happy Birthday" inside. (Sorry about the quality of the scan - it was inside its little plastic sleeve when I scanned it, so it was a little shiny...)

So here's how it works! Avery will draw the winning name from a hat (or maybe a bowl...!) before she goes to bed on 03/22, so you have until then to enter! You can get your name put in up to eight times if you do all of the following things :)

For 1 entry: Leave a comment on this post! (you can leave more than one!)
For 2 more entries: Tell me what this is a picture of, and when it was taken, if you can! (Clue - you'll find the whole picture somewhere in the blog archives.. .!)
For a whopping 5 entries: Link to ForYouByV's etsy shop on your own blog, either in a post or in your sidebar :) Here is a nice little link for you:

I think this is going to be fun! Feel free to enter as many times as you want, even if you've never commented on my blog before :)

Silver lining!

2009-03-12T16:30:00.003-04:00

Brogan appears to be coming down with the same stomach virus that Avery has. Boo! But, strange as it may seem, I'm actually feeling relieved in some ways, because it means that Avery's sickness is definitely a virus and not some shunt problem, which I'm always worried about in some part of my brain whenever she gets sick! So while I'm not looking forward to the next few days of two sick little ones, at least I know what it is and don't have to worry. I am looking forward to being able to sleep in my own bed again, instead of on the sofa next to Avery, and I also am looking forward to sleeping for more than an hour at a time... *sigh* I've had a headache all afternoon, which I think is from sleep deprivation. The other good thing though is that Brogan didn't start feeling bad until yesterday afternoon, which means that the whole time Gabe was working his 16hr shifts this week, I was only having to look after one sick child, and now that both of them are sick, both Gabe and I are home to look after them. Small blessings make the biggest difference.

Stomach flu...

2009-03-10T21:38:00.004-04:00

Avery has been sick with a stomach flu or something since Sunday. Again. She just had one a couple of weeks ago, and now she has it again. And this time it seems to be worse and lasting longer. I haven't taken her to the doctor, but if she's still as bad tomorrow then I think I will, even though they'll probably just tell me it's a stomach virus and we just have to wait it out. Poor baby is really unhappy with it. During the day she keeps on getting little pockets of energy when she doesn't feel too bad, so she'll try to play a little bit, and then she'll suddenly say "I feel sick, I need to lie down" or "I have a headache, and need to have a nap for a little while" Poor sweet girl.
It started on Sunday night when she woke up several times quite unhappy and feeling bad. So I ended up bringing her downstairs to sleep on her little makeshift bed in the tv room, and I set myself up on the couch and turned on a quiet movie for her to relax to. Then she suddenly told me "I need to puke", so I grabbed a plastic tub and she threw up. Probably more than you needed to know, but it's just that that's the first time I think that she's told me she's needed to throw up before she's already vomited all over her pillow, so it was great! Not great that she had to, but great that she told me in time! Anyway, she threw up a couple of times that night. She had a bit of a fever (about 99.8 F)all day on Monday, and spent most of the day like this:
Notice how sad and sorry for herself she looks! She was watching a movie and holding onto her chuck-e-cheese birthday balloons (I had no idea those things lasted so long! Her birthday was almost a month ago!!!), they seemed to comfort her a little :)

And cookie monster of course... talking to him and telling him how sick she was seemed to help too :)

This was today. She was watcing Enchanted and needed her "Panato heads" to watch with her. (They are all her own creations by the way - quite "normal" looking today, no extra arms or eyes on top of heads!) This was one of the times that she'd had a little energy so she was playing with her potato heads and having fun with that, then all of a sudden felt sick again and said she needed to lie down for a little while. And a couple of times while she was lying there she said "I'm busy!!" which means "dizzy" in Avery-speak. All she's had to eat or drink today and yesterday is pediasure. Every now and then she asks for something else, so I bring it to her, but then she won't eat it. She has had apple juice a couple of times, but has vomited afterwards both times, so now I'm not letting her have that anymore, so it's just pediasure.

She's sleeping downstairs again tonight. I put her in the recliner before bed and gave her some pediasure and told her I was taking Brogan upstairs to get him ready for bed and then I'd come back to get her, and by the time I came back she had fallen asleep! Poor girl's exhausted! So I carried her upstairs and put her in bed where she sadly whined "No, I need to say prayers!!" so I said "Okay, do you want to just say it in bed?" and she said "Okay" and she kept the same whiny tone of voice the whole time she prayed. I couldn't help but smile as she whined,

Dear Heavenly Father, We thank thee for this day, we thank thee for this many blessings, please bless our friends, please bless our school, in the name of Jesus Christ, Amen.

I love that she just had to say her prayers even though she was practically asleep and she felt horrible! I love that girl!
She woke up about an hour later just inconsolable though, so I ended up bringing her downstairs. So I'm being very quiet, and I'll be sleeping on the couch again tonight. Hopefully tomorrow she will be feeling better.

Stretches, socks and treadmills!

2009-03-09T22:01:00.004-04:00

For Avery, part of living with CP is the need for frequent, intense stretching. This has never been something she enjoys. Unsurprisingly. But here is more proof of the fact that she has an amazing, thoughtful Daddy, because recently he has been able to get her to do a lot of her stretches willingly and almost unassisted! This might not sound like a big deal, but it is! All its taken is giving the stretches fun names, but it's made the world of difference. Here are some of Avery's stretches:

The Dinosaur Stretch!
The idea is to stick one leg up straight behind her as high as she can. It's difficult for her to do, and she can't hold it for more than a split second on her own, but she likes pretending to be a dinosaur - I suppose the leg sticking out is her "tail" :)

The Butterfly Stretch!
She can do this reasonably well all on her own, but to get s decent stretch she needs help getting her feet together properly and pulled up close enough to her bottom, but once there she will push her knees down all by herself and then "flap" her legs like a butterfly :)

There's another stretch called the whale or alligator stretch, which I apparently haven't taken a photo of yet because I couldn't find one when I was looking for one for this post! So I'll try to get a picture of that one too. She does that one by sitting with her legs out in front of her, and she has to open up her legs as wide as she can, which isn't very wide, so we help her do it, and then she helps keep them like that for a few seconds by holding her knees, and then a toy comes along and she "eats" it by snapping her legs back together.
I'm telling you, I consider it almost miraculous to see her not only putting up with stretches with very little complaint, but also actually enjoying them!!! It's amazing! Of course, I think that stretches done this way may well be not quite so vigorous or maybe effective, but the fact that she's willing to do them is worth the slight loss of intensity. Plus, I think the fact that she's relaxed while doing them goes a long way - when we do them the regular way, her dystonia kicks in straight away which makes it really difficult to even pull her legs into a stretched position.
Here is Avery a couple of weeks ago on the treadmill at physical therapy with the wonderful Lisa. She's been doing this for a while, walking with the treadmill on its lowest setting. She actually quite likes it! But Lisa was even able to let go for a couple of seconds last week! Of course, the second Avery noticed she wasn't touching her, she about fell over and Lisa had to hold on again, but it was still great!
I had my mother send me some long white school socks for Avery to wear with her braces and theratogs. I was thinking about it because the long socks she had before just weren't good enough, because they started falling down, and even if they didn't they weren't great with her theratogs because they didn't protect her skin from the silicone on the elastic, so she was forever getting sore red marks all over her legs where the webbed silicone touched her. These school socks are PERFECT! They are long enough that they don't leave any exposed skin between the top of her braces and the bottom of her theratogs, they don't slip or fall down, they're thin and airy so they won't make her too hot when the weather gets warmer, AND they make me feel nostalgic :D Bonus!!!

Flashback Friday: First post-shunt MRI

2009-03-06T19:54:00.003-05:00

Okay, so when I pulled out the old MRI films to scan one for my post this afternoon, I decided I may as well scan some more of them! So here they are - more evidence of the fact that my baby is an absolute miracle!! :)
Maybe this is weird, but I actually think this one with all the bones in her little neck, and her little shoulder peeking out is adorable!! I know, I know, how can an MRI image be adorable...but I'm her mother okay?! I'm allowed to think that!

You can tell this is taken from the front because the distortion is from her shunt, which is behind her right ear :)
Cutest little baby alien I ever did see!

Neurosurgeon appointment

2009-03-06T10:15:00.006-05:00

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

2009-03-03T22:24:00.004-05:00

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?

It's a shame...

2009-02-22T10:00:00.003-05:00

Okay, I know I just posted about comments people make recently, but yesterday I was walking into Kroger with Brogan in the cart and Avery following behind me in her walker, and there was a woman who was waiting for us to go by so that she could get to her car, and she looked at Avery and - with a sympathetic sag of her shoulders and a tragic look on her face - said, "It's a shame she's handicapped." This has bothered me more than any other comment anyone has made. I lay awake thinking about it last night, and it still gives me a hollow burning feeling in my heart when I think about it. I've been trying so hard to not let it bother me, because I'm sure she thought she was being kind or something, but what right has she, or anyone else for that matter, to think that anything about my beautiful little girl is a shame? Why is it any more acceptable for her to say that to me than it would be for me to go up to someone and say "It's a shame your child is so ugly" or even, for that matter, "It's a shame your child is so short." Who's to say that being short is something to be ashamed of? It's not, and I certainly never want my child to feel ashamed of her physical abilities and limitations. Really, I don't understand what reaction she was expecting from me. I'm sure she didn't expect it to be hurtful, but did she really expect gratitude for her thoughtfulness or something? I don't understand what she was thinking. She was lucky I didn't slap her. As it was, I was so flabbergasted that I just stared at her open-mouthed for a moment, then looked at Avery who luckily didn't hear (did she think she wouldn't be able to understand???), then stared at the woman again, and after a second or two all I could think of to say was, "She's amazing."

Avery's birthday

2009-02-16T19:18:00.003-05:00

Well, I am now the proud mother of a 3 year old!! We had the best day, Avery was so happy! I love her so much :) There are pictures on my other blog here.
During the past week or so I've obviously been reflecting a lot on Avery's birth and early days. She is such a miracle. I feel so incredibly blessed and privileged to have her in my life. I think that is something nobody but a parent of a special needs child can understand - the joy they bring. The rest of the world seems to assume that it's only hardship to care for a child with extra needs, but what they can't really know is that the joy they bring is a kind of joy that no other child could bring. No doubt about it, I love my son just as much as I love my daughter, but there's something about the fact that Avery's life itself is a miracle that just...I don't know, I don't have the words for how I feel. She is just so amazing. I am so unspeakably grateful to my Heavenly Father for trusting me enough to send her to me, and for loving me enough to bless my life with hers.

Flash back Friday: Shunt surgery

2009-02-13T10:00:00.001-05:00

Tomorrow will be my baby's 3rd birthday! I can't believe how fast time is flying. My beautiful girl. This time 3 years ago I was a bag of nerves waiting for my little one to be born - frustrated that we were still having to wait because I knew there was nothing that could be done for her until she was born. I was scheduled to have a c-section on the morning of the 15th if the amnio showed that her lungs were mature. On this night 3 years ago my husband and I went out to celebrate Valentines day one day early because he was supposed to be at school on the actual night of valentines day. It was the first time really since Avery's diagnosis that I'd been able to really relax a little bit and enjoy spending some time with my husband. Then, that night at about 3:30am my water broke, and at about 5am or so I woke Gabe up and told him, and we called the doctor. I had a big valentines day breakfast planned for Gabe though, and that was my "gift" to him, so I didn't want to skip it, so I still made it for him!! Probably not the best idea, but I wasn't really having painful contractions, and I'd bought strawberries and stuff especially for it, so I insisted on doing it anyway!! :) My mother had flown in the day after we told her about Avery's diagnosis, so we woke her up too before breakfast, and then we set off. I've written about the day of Avery's birth before here, so I'm not really going to write much more about it now. I do want to talk a little bit about her shunt surgery because I haven't really talked much about that before.

Avery's surgery was scheduled for the morning of February 16th, when she was not quite 48 hours old. It was scary. I found that I had to not think about all the risks and dangers, because I would probably have lost my mind!
A year or so ago I wrote an article for Helium about preparing for Avery's surgery, so I'll just paste that in here and then post some photos too.

Babies are amazing.
My little girl underwent surgery when she was two days old. When I was 35 weeks pregnant with her she was diagnosed with congenital Hydrocephalus, with Dandy Walker variant, which meant fluid was unable to drain from the ventricles in her brain the way it should. So after planning for a natural birth, my baby had to be delivered by c-section, and then be prepared for a surgery which involved being put under general anesthetic, having a hole drilled into her skull through which a tube would be inserted through brain tissue until it reached her fluid-filled ventricles, and then having a tube pushed under her skin, down her neck, over her chest and into her abdomen, to drain the fluid. There is nothing minor about that kind of surgery, especially when it's to be performed on your own tiny newborn child. Yes, I was terrified by the risks that the surgery itself presented, but I knew that without it my little girl would have no chance at life.
As a parent of a baby who needs surgery, there is nothing easy about your new, terrifying situation. You are cruelly launched headfirst into one of those experiences you hear about, but never imagine for a moment that you'll experience first hand. In our case, we found out our daughter would need surgery two weeks before she was born. Honestly, in a lot of ways the hardest part was waiting for her to be born, because we knew she needed help and she couldn't get it until she was born. I felt so desperately helpless. In the ultrasounds, I could see how her sweet little enlarged head was under so much pressure that her brain tissue was squashed against her skull, and I couldn't help but think that she must be in pain. I felt so much relief when my water unexpectedly broke, because I knew it meant that my baby would be born that day, and that she would finally be able to get the help she so desperately needed.
My daughter was officially diagnosed with hydrocephalus on February 6th, she was born on February 14th, and had surgery on the 16th, but to this day I find it hard to believe that it was only ten days of waiting! It truly was the longest ten days of my life. Every second seemed to last forever, because I knew that every second presented an even higher risk of irreversible damage - a higher risk that my little girl would never be given the chance to lead a normal life.
How did I deal with the situation thrust upon me? I have always been a religious person, but I can honestly say that I probably spent more time praying in those ten long days than I'd ever prayed before. My husband and I leaned on each other for support - some days he'd be the strong one, and other days I would be stronger. I studied and researched and absorbed every piece of information I could lay my eyes on about hydrocephalus and the surgery she would be receiving. After my daughter was finally born, there was relief and hope, even though her future was still uncertain. She was here, and something could finally be done. I spent every moment possible sitting next to her in the NICU in my wheelchair, in awe of her beauty and the sweet sweet spirit that she already possessed. I sat there touching her, stroking her soft, sweet skin, breathing her in, and feeling pain and sorrow for every heel prick, every IV, and every monitor hooked up to her. The day of her surgery we went with her for as far as they would let us, reluctantly kissed her goodbye, and went back upstairs where we tried not to watch the clock as we waited and prayed and hoped, and tried to occupy and distract ourselves. Finally we got word that she was out of surgery, and all had gone well. We were able to go see her back up in the NICU where she was sleeping, but still able to breathe on her own. She coped so well with the surgery, and recovered so quickly that it was only eight days later that we were finally able to bring our baby home.
I am so filled with gratitude when I think that even 50 years ago my daughter may not have even survived, let alone grown to be the sweet, happy, bright little 18 month old that she is today.

Gabe giving her one last kiss before they took her down to surgery. We went with her as far as they would let us go, and then came the waiting which seemed eternal!

Here she is sedated after surgery. Notice that her gauze dressings are heart-shaped :) She was born on valentine's day, so they gave her valentine's dressing :) I thought that was cute.

A tired looking Daddy.

After the dressings were taken off. She was a little jaundiced so they put her under the bili lights. I love how warm and cozy she looks here :)

This big shunt and incision looked so scary and huge at the time. It is so amazing how well babies cope with surgery. On of the other scary things was that because she had to lie on the same side of her head for so long after she had her shunt placed, and because so much fluid was draining from her head, she got a dent on the other side of her head that was almost an inch deep. It did finally even out, but we did ask her nurses and dictirs about it because it was so worrying to see and feel.

Walking at the store

2009-02-11T22:13:00.002-05:00

So, recently, Avery has been using her walker whenever we go out shopping. I've been trying to make sure that I give her the opportunity to be independent wherever we are, and she's been doing a great job! Of course, it's meant that everything takes a lot longer to do, but that's just fine with me because it means that my little girl is starting to realise that she can walk by herself wherever we are. A couple of weeks ago I had a few things I needed to get, so the plan was to go to target, then walmart, and then joanns. At Target I gave Avery the option of using either her walker or her crutches, and she chose her walker. (Which is good actually, because she can walk a lot faster and longer with her walker - crutches are a lot wobblier and more tiring) She walker the whole time we were in Target (including to and from the van!), so when we got to Walmart, I thought she must be tired, so I gave her the choice of using her walker or sitting in the cart, and to my surprise and delight she chose the walker again!! And she did great!!! So we didn't make it to Joanns, because the first 2 stores took about 2 hours, but I was so proud of her!
Of course, we get a lot more comments and looks now that Avery's walking whenever we go to a store. Most of it is lovely! It's interesting to see how different people react to her. I love when random people seem to be amazed by her. In the parking lot at walmart, for example, one woman stopped in her tracks to exclaim "You are so amazing!! Look at you!!" which I thought was sweet. Sometimes people will stop and tell us how they or someone they know used to have braces or a walker just like hers. Some people will make a comment about how pretty her hair is, or what pretty eyes she has, or something like that, which, again, I love, because of course she's beautiful! Sometimes though people don't really know what to say or do. We were at Kroger the other day, and there was a little boy there with his mother, and the first time we crossed paths the little boy asked his mother if Avery had hurt herself and that was why she needed a walker. I don't have a problem with questions like these, especially from children, but his mother ignored him. I gave her the benefit of the doubt and thought that maybe she hadn't heard him, but we crossed paths two or three more times, and each time the little boy asked her why Avery needed a walker, and each time he was completely ignored.
How would you react to something like that? On one hand, I can understand her hesitancy to say anything in case she offended us. I still remember when I was about 15 I was on a bus and there was a little boy on the bus with his mother, and to this day I still don't know what his medical condition was, but he obviously had something. I didn't stare at him, but I did steal a few glances wondering what had caused the noticable deformity, and I remember feeling so sad because I just worried so much that he'd had to deal with the cruelty of children. Now I look back and feel sad for his mother, because she probably had to deal with those curious glances everyday, having everybody notice what was "wrong" with her son without seeing what was wonderful about him. But I think it's a tough thing to deal with to, because what should people say? I know that for me, I would have liked it if that mother at the store would have talked to me when her son asked her about Avery, or done anything other than ignore the question. It is not offensive to me if someone asks me about her. I will happily take any opportunity to brag about her, so please, just ask me! Maybe she was embarassed by her son's question, but ignoring my child and pretending she's not there is hurtful, and certainly not the way to teach your child to be embracing and inclusive. I only hope that she maybe spoke to him about Avery later on when they got home and talked about why some people need help walking.
I don't know. I keep on trying to imagine what I would have done had the situation been reversed. It's hard to know because my experience with Avery makes it easier to react to other exceptional children, but I suppose it would be difficult to know if you'd never had any personal experience with one of these amazing children. What comments and reactions have been particularly irksome/hurtful to you?

Today

2009-02-10T20:29:00.004-05:00

I've been meaning to take my camera to Avery's weekly PT session so that I can get some photos of what she does there, and I finally remembered to take it this morning! But I only remembered I had it AFTER she'd finished doing stretches, and so I took a couple of pictures, and then promptly forgot I had it again until it was time to go home! Oh well, I tried.
So here are some pictures of Avery trying to stand up with her crutches all by herself.

Avery's PT's name is Lisa, and we just love her so much! She's been working with Avery since she was about 5 or 6 months old, back when she was getting PT through Early Intervention, and then when Lisa left to work for Carilion, we followed her there because we just loved her so much! She does such a fantastic job of pushing Avery and getting so much great work out of her, and yet Avery just adores her, so it's absolutely perfect! For a while after Lisa moved to Carilion, we were getting PT through carilion as well as CRD (early intervention), and the "replacement" PT assigned to us through CRD just didn't have "it", whatever "it" is, and the weekly PT sessions with her were not happy times for Avery. She just cried and cried, and got angry, and the PT was pushing her and trying to make her work, but because she was so unhappy she didn't get nearly as much done, and it left me wanting to slap the PT. So we weren't sad to leave her behind. And it made us even more grateful for Lisa, who knows how to make Avery work hard while still keeping her happy. It makes physical therapy not only happier but also so much more productive.
In the pictures you can see she's wearing her theratogs over the top of her jeans. We just do that for PT - when she goes to school I put them on underneath her clothes. They go on first, even before her underwear - that way she can still use the potty without having to take them off.
We've been worrying about her recently. She has been making so much progress, and I am constantly amazed by her, but I just worry about her developing hips and joints because while she is always progressing in what she's able to do, her muscle tightness and range of motion is getting progressively worse. That can't be good. Every time we've seen her physiatrist over the past year, she's been walking better and better, but having to work harder and harder for it. We've been wondering whether we should just talk to her doctor again about going back onto valium or something at a higher dose, even though it affected her sweet disposition, so that she can get mobile on her feet once and for all before this muscle tightness does more damage to her poor little hips. We already know that her posture and gait will probably never be quite "normal", but I worry that there may be more that we could be doing to prevent further damage. *sigh* Wouldn't it be nice if we could see into the future just enough to know whether all the choices we're making are the absolute best?

The Walking Game

2009-01-22T14:11:00.007-05:00

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

2009-01-21T22:07:00.004-05:00

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!

Good, Better and Best

2009-01-19T21:21:00.005-05:00

It was ward conference at church on Sunday, and one of the things that was mentioned a little bit in Sunday School was the fact that often times we're not having to choose between doing good or evil, but rather we're having to choose between good, better and the best things to do. This is something I'm sort of strugglin with I suppose right now, because I have so many things I'm trying to do, and they're all good things! I just don't have time to do them all, so I need to try and figure out what my priorities should be and do those things first. Things battling for position on my list of things to do are:

Catching up with both my blogs which have been sadly neglected of late...

Setting up my etsy shop (see sidebar), which means lots of sewing to stock it up because I feel that to really give it a chance to see whether I can make some money on etsy, I need to really go all in. So that's been taking up a lot of time
Working with Avery on her PT and OT stuff, and the rest of the time trying to make sure she's not w-sitting, and not watching too much tv
Normal "mother" stuff which takes up the majority of my time, of course
Personal goals of reading/studying scriptures every day
Trying to keep up with housework when mess seems to ooze out of the woodwork every time I turn my back.
Working out and losing this baby weight...this is the goal which is probably the most neglected...I don't even want to admit how few times I've used my eliptical machine since the beginning of the year!!!

Anyway, I'm just letting you know why I've been so bad about updating this blog recently. Excuses, I know, but good excuses! I just decided to try the etsy thing in earnest after Christmas after helping my mother set up her shop, and I'm donating a gift for a "virtual baby shower" next Wednesday, so I'm working like crazy to try and fill up my shop so that there's lots for people to see when I get my little moment of exposure. So I've been sewing sewing sewing, and I'm also planning on listing all my art there and deleting my art website because I think it will be easier and cheaper to keep etsy up to date rather than having to run my own website.

I'm sure you don't want to know any of that.

So anyway, rather than trying to go back to where I heartlessly abandoned my website, I'm going to start from here and try to work backwards if and when I have the time. So here's a little about what we did today!

We met some friends for a play date at the mall! They usually have the coolest little play area with soft padded animals the little ones can climb all over, and Avery LOVES it, but after getting all the little ones (Our two and our friend's 3 little ones) out of the cars and into strollers, and getting Avery to walk with her walker all the way from the van to the play area, we discovered that it was gone!!! Sometimes they take it down for Christmas displays and stuff, but I can't imagine why it would be gone right now, so I'm hoping they haven't decided to permanently remove it! There was a little area with some of the ride on toys that you put quarters in, so we decided to let the little ones play on those for a couple of minutes. But while we were there, the nicest lady handed my husband a handful of quarters saying that she didn't have any grandchildren of her own and she liked to see children being happy and having fun, so she basically funded an afernoon's worth of fun for our children! She was so sweet!

Here you can just see Brogan in his baby carrier (which I'm wearing but you can't see me!) on the left edge of the picture, and you can see our 3 children on 3 separate ride on toys having a great time! Avery's on the train in the front :) And in the background watching on is the lovely lady who funded the whole thing :D
Avery riding on the motorbike toy. She used to be a little afraid of these toys, but these days she loves them, and she was very sad when we made her leave this afternoon. I know, we're such mean parents....

This is Avery and Brogan all ready for bed tonight. It's funny because on Saturday I made Avery this new pair of PJs (because footie pajamas are great, but because of Avery's CP, the one-piece footie PJs are impossible to get off her quickly if she needs to use the potty, and for some reason you just can't buy two piece footie pajamas for anyone but babies, so I designed and made some, and will be making some for my etsy shop!), and last night was the first time she wore them, so I wanted to get a picture of her in them. So after I got her all ready for bed, I asked her to sit on her step stool so that I could take some pictures of her, so tonight after she got all ready for bed in the same pajamas, she crawled right over to the step stool saying "I need to smile on the step stool with Brogan, and Mummy need to go get the camera!" It was funny! So how could I say no to that?? I love my babies SO MUCH!!!

Blog browsing

2009-01-13T14:36:00.003-05:00

I want to tell you how I've spent the last 2 hours of my life and why it's made me feel so blessed. I have been blog browsing. Normally, sitting in front of the computer for this long would make me feel like I was wasting my day when I have so many things I should be doing, but these past two hours have made me feel enriched. I am so grateful for those of you out there who take the time to share your experiences about raising your beautiful, extra special children through your blogs. I feel like a part of a beautiful community, and even though I've never met any of you, I feel so connected to you and it makes me feel so good. Thank you so much to all of you for sharing. And if you have visited my blog, I would love to hear from you too -sharing makes me feel so good, and I'd love to hear your stories. Please talk to me so that I can find your own blogs too if you keep one :)
While there is a lot that is wrong and scary about the world today, I feel blessed to live in this day and age where the internet can make me part of this amazing community of wonderful mothers and even more wonderful children. It makes me so grateful to know that my daughter is growing up in a world where she doesn't have to feel like the odd one out, because she will have access to this huge network of people with problems just like hers.
So thank you. For being there. I would feel so much more alone without you and your willingness to share your experiences.

Avery's new braces

2009-01-10T22:48:00.003-05:00

Well, they're not really that new anymore, but I never posted a picture of them before :) She got these about a month and a half ago, and she's been doing really well with them.
Oh!! And I forgot to mention her biggest news since last time I posted! Avery is potty trained! She was almost done in the summer, but then Brogan was born and she started preschool, and she regressed, but now she's out of diapers except for nighttime. And she's dry every morning, so I should probably put her in underwear to go to bed too, but I'm scared...! But YAY! It's been about 3 or 4 weeks now. She's had a couple of accidents this week, but overall she's been marvelous. Lovely girl.

We're still here!

2009-01-10T21:14:00.003-05:00

I just wanted to let you all know that I'm still alive! I know you must have been wondering since I've not posted for so long...sorry about that :/ The holidays consumed me! It was lovely, but it meant that I didn't have any time for posting, so I apologise, and promise to be better :)

My other blog has also been neglected, but there are a few photos from Christmas over there if you'd like to take a look. But I hope you all had a Merry Christmas, and I wish you all a happy new year too :)

Of course, I have all sorts to catch up on, but I'm not sure where to start. I suppose today I will just tell you about Avery's IEP updates at school. It's been quite interesting. For the first time, Avery will officially be receiving occupational therapy in addition to the physical therapy! Sometimes I find it a little difficult to read some of the various evaluations she's had throughout her short life, because they make me want to go find the person who wrote them and say, "Well, yes, it's true that she can't do that, but what you don't understand is how amazing she is!!" But I try to squash those feelings because I know that it just means she'll get even more help, and she does need help. So, you probably don't want to read the whole thing, because both the physical and occupational therapy evaluations are about 2 or 3 pages long, so I'll just try to summarise a little bit.

Occupational Therapy

Avery was referred to an OT because of a few things they noticed in the classroom: difficulty crossing midline; decreased ability to coordinate both hands; and difficulty with fine/visual motor skills such as stringing beads and imitating horizontal, vertical and circular strokes. *The adoring Mother in me wants to tell you that Avery loves drawing loopy circles, so she must have just not felt like it that day!!* She was tested in November when she was 33 months old, and apparently she did a "visual motor integration subtest" in which she "demonstrated solid skills to 22 month level and scattered skills from 24 months to 30 months." Her greatest areas of weakness appeared to be in scissor skills, imitating block designs, opening and closing screw-top bottles, and using immature grasping patterns on tools. *sigh* Sometimes these things make me feel like a bad mother, because I haven't been trying to get her to use scissors, and I thought that the way she held "tools" worked just fine, and I thought that she opened bottles pretty well for her age. Another example of how her being my first child means that I'm not as aware of what's age-appropriate development. Anyway. Here was the summary:

Avery presents with global developmental delays due to her medical condition
of Cerebral palsy, which impacts her ability to participate in fine motor, visual motor and self-help skills in the classroom environment. Though she is displaying emerging grasping skills, Avery displays below average skills in the fine motor domain due to weaknesses in eye-hand coordination. It appears that Avery will benefit from direct Occupational Therapy services to address these areas of need.

These are the goals which were added to her IEP as a result of her OT evaluation:

Avery will imitate a horizontal and vertical line at least 4/5 trials on 5 separate occasions by March 5, 2009. I don't think this will be a problem since she's already doing horizontal lines at home.
Avery will remove all objects from a container by reaching through the opening by February 5th 2009. I'm not sure why this is on there actually, since she learned to take blocks out of their box by reaching in and taking them out one at a time a long time before she figured out that she could just pick the thing up and pour them out.
Avery will string at least 10 large beads on a lace by March 5th 2009
Avery will imitate circular strokes on 4/5 times on 4 separate days by April 5th 2009. Again, I don't know why this is there since circles are her default...
Avery will draw a person with a head and at least 3 body parts when asked to draw a picture of herself on 3 separate occasions by May 30th 2009. This one is interesting....she's never even tried to draw a person....
Avery will snip an index card with scissors, making at least 10 snips around the edge of the card by March 5th 2009.
Avery will play spontaneously (using both hands) with messy materials with no avoidance responses on 4 of 5 occasions by April 5th 2009.
Avery will use functional 3-4 finger grasp on writing implements with minimal verbal cues on 4/5 opportunities by June 30th 2009.
Avery will orient scissors in hand correctly to cut along a straight line within 1/2" of highlighted line by June 30th 2009.

Physical Therapy

I'll tell you straight up that the main concern I have with the PT eval and goals is that she wants her to use her walker more and not use her crutches as much. I can understand this since she is faster and more stable with her walker, and it would be safer with all the other kids around and everything, but she's not going to get faster and stronger with her crutches if she doesn't use them. And since she's made vast improvements with her crutch usage in the last month or two, I feel that the should be integrated more into her daily life, including school. Her physiatrist and other PT seem to feel the same way I do, so I've encouraged some comunication between them, so hopefully they'll be able to coordinate there since we don't want conflicting goals.

Of course, the overall PT eval wasn't really anything we didn't already know - w-sitting, assistance needed with all upright mobility, trouble getting up and down steps, decreased maneuverability (which wouldn't be so much of a problem with the forearm crutches, I might add!!!), unable to use moveable playground equipment such as tricycles. You know, all of that. Here's the summary:

Avery is a 2 year olf student enrolled in the REACH preschool program. She has been diagnosed with cerebral palsy due to Dandy-Walker syndrome. This diagnoseis decreases her overall level of independent and safe mobility within the classroom, school building and on the playground. Avery uses a posterior walker for primary mobility at school, but exhibits variable speed and is unable to keep pace with her peers at this time. (note - she is perfectly ABLE to keep up...she's just easily distracted and there are a lot of kids to look at on the way to the classroom from the bus. Not motherly bias, FACT) She also has forearm crutches for use, but these are not safe to use at this time in school due to factors noted above. (Her walker wasn't safe to use when she first started using it either, but she gained stability through continued use...how else is she supposed to get "safe" on her crutches?) Avery requires assistance for transitions between floor and sitting or standing, and is unable to get in/out of her seat at the table for meals or for fine motor tasks. She also requires assistance to change seated positions on the floor and tends to sacral sit rather than sit in a more upright position. Avery also exhibits some self stimulatory activities which have increased in the past 4-5 weeks, and she is difficult to be redirected out of these activities, especially when on the playground.

The self-stimulatory activities she's talking about there are Avery's tendency to flap her arms when she's excited, and how she can fixate on things like watching the other kids swinging on the swings, and when she does fixate like that it's hard to get her to do anything else - she'll just sit and watch. And flap!

A little side-note here, and tribute to the good father that is my husband. This has been the second occasion that I can think of where he's turned out to be right for worrying about something which I told him not to worry about. The first time was with Avery's clonus. That's the way Avery's legs shake if they're in particular positions. We noticed this months befpre her CP diagnosis, but I told him not to worry about it because my legs used to do that when I was little, but then it turned out to be one of the manifestations of her cerebral palsy. 1 point to Daddy. This second time with the arm flapping gets him 1/2 a point. I told him not to worry about it because I'm sure a lot of 2 year olds flap like that when they get excited, and while that's true, sometimes it does seem that she's not really aware of the fact that she's doing it until you point it out to her. The flapping itself is not the problem, it's the awareness. So the tally is: Daddy 1.5, Mummy 0. Boo.

Anyway, this post is taking way to long, so I'm not going to type out all the new gross motor goals they put on her IEP. They're all about gaining more independence though. But with her walker, not her crutches. Going up and down steps, getting in and out of all classroom chairs, carry things around the classroom, get to the classroom from the bus in less than 8 minutes...you know, that sort of thing.

Now I'm going to bed. Sorry for how long this is. :)

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

2008-12-15T09:00:00.004-05:00

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...

2008-12-14T21:36:00.005-05:00

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

2008-11-13T13:57:00.003-05:00

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:

It's Lisa. Lisa is great. And She's been working with Avery since she was a tiny little 4 month old :)
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

2008-11-06T19:17:00.006-05:00

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.

2008-10-29T12:29:00.003-04:00

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

2008-10-28T22:18:00.003-04:00

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

2008-10-28T22:00:00.002-04:00

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

2008-10-15T11:18:00.006-04:00

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

2008-10-10T21:43:00.004-04:00

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

2008-09-30T17:47:00.008-04:00

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

2008-09-16T11:45:00.003-04:00

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??

2008-09-15T11:26:00.003-04:00

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

2008-09-08T21:22:00.003-04:00

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...

2008-08-01T18:20:00.003-04:00

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

2008-07-29T15:15:00.005-04:00

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

2008-06-17T13:37:00.003-04:00

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.....

2008-05-21T12:41:00.002-04:00

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

2008-03-02T14:02:00.005-05:00

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 :)

Avery's first walker

2007-10-20T08:32:00.000-04:00

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

2006-08-31T20:11:00.000-04:00

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

2006-03-31T12:32:00.000-05:00

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-

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

2006-02-28T23:52:00.000-05:00

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

2006-02-28T23:51:00.000-05:00

It's a girl!!

Daddy's first touch

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

First Kiss

First Family Picture

Welcome to Holland: Part Two

2006-02-28T23:50:00.000-05:00

The good news was that there didn't appear to be anything wrong with the baby's heart or spine, which meant that it was likely that she didn't have spina bifida or some of the other conditions often associated with hydrocephalus. It also didn't appear to be genetic, which meant that any other children we have will have as good a chance as anyone to be born perfectly normal. None of this good news seemed to soothe our pain though. At one point I remember we were talking about how our little girl's life might be like, and the possibilities that she might be noticably handicapped in one way or the other, and we were worrying about the cruelty of children when it comes to that sort of thing, and Gabe said "You know, I hope no one ever picks on her, because I'd hate to get sent to jail for beating up a twelve year old." That made me laugh. But I knew what he meant. The crazy thing was that hearing the terrible news had somehow made us realise how in love with this baby we were before she'd even been born! It took us about a year and a half and one miscarriage to finally get pregnant with her, so we'd been looking forward to having her for a long time, and we all of a sudden began to understand the unconditional love a parent has for their child, even before they are born.

On February 6th, 2006, when we were at the prenatal diagnostics office, they did an amniocentesis to check for lung maturity, because they wanted to deliver the baby as soon as possible so that they could get her the help she needed. This is where in hindsight I get a little angry and wonder whether things weren't done as well as they could have been. I don't of course remember all the exact numbers and figures, but I think the number they were looking for to indicate likely lung maturity was something between 52 - 59, and the number they got from the amnio was 49, so they said that there was a chance that her lungs weren't quite mature yet, so they sent me home. An ob-gyn friend of ours had an office in the same building so before we left we stopped by his office on the off-chance that he was there to tell him what was going on and get some sort of comfort. His first reaction was basically "Why aren't you in the delivery room?", and he went off to speak to the other doctor to see what was going on. Apparently the neurosurgeon thought it best to delay the birth because he said it would be better not to run the added risk of lung complications. Now, at the time, I thought, okay, fine, I want my baby's lungs to work properly, although the frustration of knowing that the pressure on my little baby's brain was increasing day by day, as was the risk of permanent damage, and knowing that there was nothing that could be done for her until she was born - do I need to tell you how frustrating and heartbreaking that was to live through? I have since learned that steroids are often administered to accelerate lung maturation. My sister-in-law started contracting and dilating early in her third trimester with both her babies, and both times was given steriods to develop the lungs just in case the baby did come early. Why, then, did no-one offer me anything for my baby's lungs? I know it would only have made a difference of a few days, but considering my baby's condition, those few days surely could have made a difference. The hydrocephalus was not present at my 20 week scan, which means that it developed sometime in the 15 weeks following that, and when you're talking about a maximum of 100 days from perfectly healthy to seriously unwell, 8 days could surely make all the difference. Maybe those 8 days could have meant that my little girl would be walking by now. And it was probably a lot less than 100 days too - my NP who looked after me while I was pregnant said that the reason she ordered that last sonogram in which the hydrocephalus was detected was not to estimate birth weight, but it was because at my regular 33 week check-up, my measurements were off, when they had been perfectly normal up until that point. Anyway, every time I think about that, now with the knowledge that steriods are regularly used to develop lungs, it makes me so angry, and makes me wonder whether I should be doing anything about it legally. If there's a chance that my baby girl would not have developed cerebral palsy had she been born and treated up to 2 weeks sooner, shouldn't somebody be held responsible for that? I don't know.

Anyway. Back to the timeline. February 6th her lungs were deemed likely to be immature, so we went home and worried and prayed and worried some more. I finally managed to get hold of my mother in England on Tuesday morning by sending text messagess and IMs to my brother, sister and grandma asking them to tell her to call me (our calling plan does not include international calling - my mother calls me once a week on Sundays, and I hadn't told her anything the previous sunday because I didn't want her to worry until we knew for sure), so finally I was able to speak to my mother, and told her that the baby had hydrocephalus. Luckily, she had heard of it and knew what it was, so I didn't have to explain it to her. Thanks to several members of my family, my mother was on a plane the next day and was with us by Wednesday night.

I was scheduled for another amniocentesis the following Wednesday, which was February 15th 2006. They said that if the baby's lungs looked like they were mature at that pojnt then they would schedule me for a c-section that afternoon, but if not then we would go back to waiting. Thankfully, God knows better than any of these doctors, and in the early hours of February 14th, my water broke, and my sweet baby girl was born at 2:35pm on Valentine's Day, 2006. There never was a sweeter sound than that of Avery Marie Andersen's first cry. We didn't know what sort of condition she would be in when she entered this world, so to see that beautiful little girl kicking and screaming, and to be able to kiss her soft sweet cheek as my husband held her up to me, the world was suddenly a happy place again. No matter what was in store for us and our little girl, she was alive, she was breathing and she was moving! They took her up to the NICU after that, and as I lay in the recovery room after they'd stitched me up, I couldn't help but grin from ear to ear, and even now as I think of it, I still almost cry from joy.

Welcome to Holland: Part One

2006-02-28T22:29:00.000-05:00

Those of you who have been blessed with special children probably are familiar with the article "Welcome to Holland". If not, please read it. It is about the experience of learning that your perfect baby has a severe medical problem. This is something that I think you cannot imagine unless you have actually experienced it. People say, "Oh, that must have been so hard for you when you found out", and yes, it was, but what they can never understand is that the joy my special baby has given me, and continues to give me, far outweighs the heartache I experienced when I found out she had hydrocephalus! This blog is going to be about the joy of my little girl's life, but in this first post I want to talk about the hard part: Finding Out.

I was 35 weeks pregnant when I found out that the perfect baby I had been carrying for 8 months had hydrocephalus - a condition I had never even heard of before that moment. My husband had come with me to a sonogram on Thursday February 2nd, 2006, which had been scheduled to get an estimate birth weight and size of my baby, who was due on March 4th. We were delighting in the image of our little miracle up there on the screen, and didn't think much of it when the technician said, "I just want to check something, hang on" and pulled out the printed images from my 20 week scan. A couple of minutes later she proceeded to tell us that the baby looked to be a healthy size and weight. Then came the words no parents-to-be ever want to hear: "There is one thing...", and she told us that it looked as though cerebrospinal fluid (CSF) was not draining properly from the baby's brain, which meant that the ventricles had filled up with fluid and squashed the brain tissue into a thin layer under the skull, which had already expanded to the point that there was no way it would fit through the birth canal. Before we left the doctor's office that day they made an appointment for us at Prenatal Diagnostics, but they weren't able to get us in until Monday, which meant that we had an entire long weekend to think about and stew over the whole thing.

I can tell you that I left the doctor's office that Thursday afternoon in a stupified daze. Of course, because I had never heard of hydrocephalus before, I was trying to memorise the name so I could look it up, and it still hadn't sunk in that this was really happening. I can remember being very concerned about having to have a c-section because I had planned to go natural! Just a minor detail in the long run of course, but that was the only thing I was able to wrap my head around at that time!

I am a person who has always had a deep faith in a loving God, and my husband also, so of course we both spent a lot of time over those next few days on our knees praying that this baby's sickness would be healed. We spent every available moment on the internet reading up about hydrocephalus and filling our heads with all sorts of scary statistics and figures. I kept on hoping that when we showed up at the Prenatal Diagnostics appointment on Monday they would take a look and say, "Well, I don't know why they told you that, there's nothing wrong with this baby!" On Sunday Gabe and I both had blessings, and I sat down fully expecting to hear "Don't worry, all will be well", but instead I heard, "You will be blessed with the strength to get through this, and you will be blessed with joy". That was when it first hit me that this baby really was sick. That was when my tears came, and all Gabe could do was hold me.

It hit Gabe the next day at the doctor's office. Of course, they did confirm that Avery really did have hydrocephalus, and we were sent all over the building for different tests and scans. We were sat down with doctors and advisors and counselors and bombarded with statements and questions and warnings. At one point we were sitting in a room by ourselves and Gabe was calling his mother to ask her whether there was any history of birth defects in the family, and that was when he broke down.
At this point of course we were being told all the worst case scenarios, and we had know idea whether our sweet little baby would even be able to function, let alone at what level. We were told to prepare for the possibility that she would have severe physical and/or mental disabilities. There are no words to explain how it feels to have the perfect baby you've been planning for taken away from you like that.
More on the arrival of our little girl next time...