A bus...on the bus!

Lately, Brooklynn has had a hard time sitting still on the bus. The aide on her bus really thinks a lot of Brooklynn, and sits with her every day, but for the past two weeks Brooklynn has given her a fit. She started by squealing loudly when the bus brakes made a noise, then before you know it, she's squealing the entire bus ride and making the other kids upset. We finally got her to stop squealing by telling her "Shhhhhh" every time she did it, made her put her finger over her mouth, and told her that if she wants to ride the bus, this is what she has to do. No squealing! And she complied.

Brooklynn's Mom got her this awesome bubble wand with glitter and stars...and bubbles...and B can say bubbles, so it's one of her favorite toys. She loves it! She walks around showing it off...."bubbles"....."bubbles" all day long. Unfortunately, it didn't take her long to discover that it made a loud thumping noise if you bang it on the side of the bus, and then she decided she would hit the bus aide with it. No more bubble wand on the bus! She's a little ticked about that, but I know she understands why she can't have it!

 So, we decided to send books that the aide could read to her on the way to school. This worked for a while, until she started taking her shoes off and throwing them at the other kids! She needs something to focus on. Something to touch, play with, take her attention off of the fact that she's strapped in (now in a harness because of her behavior) and can't go anywhere.

Last night her Mom said she sleeps with a bus at her house...makes sense, she loves the bus. Or at least I THINK she does. She still lights up when she talks about it, but her behavior makes me wonder...so this morning, I asked her if she wanted to take the bus on the bus. She giggled and said, "OK." While we were waiting on the bus, every time I said, "Are you taking your bus on the bus?" She giggled. She said..."bus a bus"

So we will see this afternoon if taking a bus on the bus helped keep her occupied. If not, the next step is an Ipod and headphones. I'll keep you posted!

What does she have against bed sheets?

Like all children, Brooklynn has some habits that leave you scratching your head going, "Now why does she DO that?" One of those things is the fact that she won't leave her sheets on her bed. She hates them. It doesn't matter if she's sleeping in her bed here, or at her Mother's house, she's pulling the sheets off of the bed!

This morning when I went in to wake her up for school, I discovered two things: 1) That she took the sheets off of her bed (no surprise there) and 2) She was sleeping in the floor amongst her sheets, pillows, blankets and stuffed animals. THIS means that she woke up in the middle of the night because when we went to bed last night, she was sound asleep. When she does wake up, she doesn't come and get us, she stays in her room and watches tv.

Now we have no way of knowing how long she was awake, so when I go into her room to wake the girls up, I have to feel her out and see just how tired she is. This morning, she was exhausted :(

For Brooklynn, being exhausted means something completely different than it does to you and I. She already has a hard time making her body perform the way it's supposed to, can you imagine trying to do that without the proper amount of sleep? Needless to say, we will be keeping Brooklynn home from school today.

It's 1p36!!

On Tuesday, September 6, 2011, we received a phone call from our Genetics Counselor at UVA Medical Center.  He had the results of Brooklynn's CGH Testing, which ultimately meant we have a diagnosis! It turns out, she has 1p36 Deletion Syndrome. She is missing part of her first chromosome.

I have read some of the BEST blogs by other parents who have been able to describe what this is to a "T", but I'm not quite there yet :)  As we learn more about 1p36, I will keep you posted on what we are expecting to face, what we've experienced, and most of the laughter and heartache in between.

I've started this blog because I believe it will be important in our journey with Brooklynn. It will give her something to look back on. It will allow us to network with other parents, and so far that has been our BEST resource. And it will allow you, my reader, to understand how special Brooklynn really is.