She lives!!

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

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 :)

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!!

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

Without any help!!

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

Lisa and I both about cried!

Big achievement

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

6 minutes 14 seconds!!!!

It was amazing!

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

7 minutes 4 seconds

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

Busy Busy

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....

...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!

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!!

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!

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 :)

1. For 1 entry: Leave a comment on this post! (you can leave more than one!)
   
2. 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.. .!)
3. 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!

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...

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!

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

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

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

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


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

Options

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

It's a shame...

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

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

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

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?