Little Miracles

Do you notice anything particularly awesome about these pictures?

Yep, Abby is standing up by herself in the middle of the room. We've been working on this for the past year. She can keep her balance for up to 15 seconds now. She's a little hit and miss about it though - sometimes she can do it and sometimes she can't. But she's trying. On a few occasions she has actually been successful in taking a step. She falls after taking the step, but she completes it before going down. When she used to try it before, she would fall as soon as she lifted her foot off the ground. Pretty awesome.

Abby had a sleep study done several months ago. Sleep has been an issue since the day she had brain surgery but I was never successful in getting her neurologist to see that. Apparently he doesn't think that a child who starts their day at 3AM on a regular basis is a problem. We tried all kinds of different tricks to try and get her sleeping better but nothing ever worked. So last summer we started seeing a new neurologist who agreed to order a sleep study, and it turns out there really was a problem. She has something called a central sleep apnea. When she gets into a deep sleep her brain stops sending signals to her respiratory system to breathe. That causes her to stop breathing which wakes her up, and then she is unable to fall back asleep. It's all a direct result of her AVM, which ruptured right around her brain's sleep center. The doctor put her on a medicine that increases her carbon dioxide levels in order to jump start her respiratory system and force her to keep breathing. So even if she isn't getting the 'Sleep-Breathing' signal from her brain, she'll get the 'Too-Much-CO2' signal. Ever since she started taking the medicine she has been staying in her room all night long. It is very, very rare for her to come out in the middle of the night anymore, which means the rest of us are finally getting some sleep too!! Hooray for doctors who are willing to explore different possibilities instead of just telling me that her brain is injured and she'll survive on limited sleep.

Over the past several months I have noticed that Abby has become more affectionate. For the majority of the last 4 years she hasn't wanted to be held or touched (which for the longest time was all I wanted to do...) but now she will give hugs when asked and if I ask her for a kiss she will lean her face into my cheek. She is not physically able to give kisses - her mouth doesn't pucker - but the idea is there and I love it. I especially love bedtime. She has become incredibly snugly when she is tired. All she wants is to be held and I would sit there holding her all night if I could - that's how much I love it. Sometimes she will even rest her head on my shoulder when we are reading. Have I mentioned yet how much I love this new side of her? Because I do. I love, love, love it! And we've been waiting far too long for it.

Abby wore a dress to church for the first time in nearly 3 years!!!

I still can't get over it. She has been wearing skirts for the longest time because for some reason she just would not tolerate dresses. Every year I buy her a few different options for an Easter dress, hoping that she will have changed her attitude about them, and every year I return them all because she puts up such a fight (last year she was so mad about it that she almost ripped a seam in one of the dresses!). But her favorite things to play with right now are magnetic dress-up dolls. She has Ariel and Cinderella dolls that she got for her birthday and she loves putting on all of their princess dresses. For Christmas we got her a dress-up sticker book. It has several different scenes with outfits to put on the girls in each scene (slumber party, ballet recital, etc). The only one she ever wants to work on is the beauty pageant page with all of the elegant evening gowns. Her interest gave me new hope and I decided to try again. I bought a few new dresses for her to try and it was a success!!! I still have to be careful to avoid belts, sashes, zippers or high waist seams, but oh my goodness....she wore a dress!  I am still so excited that I just might explode! Thank goodness for little miracles.