Monday, May 14, 2012

Testing for Rett Syndrome

Rett syndrome is not something that was given to Oaklynn from us. It is completely random. There was a less than 1% chance that our younger daughter, Kynslee, would get Rett syndrome as well. We had the option to do blood work once she was born and specifically test that chromosome to see if Kynslee has Rett syndrome. We decided to go ahead and do the test. We wanted to enjoy her and not constantly be worrying that she is not doing things that she did the day before a wondering if that meant she has Rett syndrome. We just wanted to know so we didn't have to wonder and worry.
 Oaklynn's geneticist (the one who did the testing) called us two weeks ago and left me a message telling us that Kynslee does NOT have Rett Syndrome, the test was negative.
We were really excited (I may have cried a little).
We love seeing Oaklynn interact with Kynslee. She thinks she is SO funny. We'll put Kynslee on her highchair to say hi to Oaklynn while she is eating and Oaklynn looks at Kynslee and starts cracking up. She loves having a little sister and thinks that she is just the funniest little thing ever.
It's hard for me to believe that I have a child that will develop normally. I keep thinking that something must be wrong. I haven't had a child that was independent.
Austin and I are Oaklynn's hands, feet, voice... we do EVERYTHING for her and I am having a hard time imagining a child of mine being independent. We are very excited about this news and wanted to share it with everyone. YAY!!!


mj said...

This post made me cry tears of relief. I don't even know you, but we're planning to do the same thing. We just brought home Leah's first little sister from the hospital on Wednesday and at her checkup on Friday my first question was how/when to get her tested. I'm not necessarily worried she has it, but, like you, I don't want to have to worry! What a beautiful family you have.

Kelly said...

I am with MJ - tear of relief FOR you! You certainly have two BEAUTIFUL little girls (just like their mommy!) I know their development will be so different but your love for them the same - I cannot wait to watch them grow up via your blog - what a blessing they are! LOVE the pictures!

Megan said...

LOL this brings back fond memories of when we brought Cal home. I remember standing in the bedroom and spinning around with him. We had never had a baby that wasn't connected to machines and tubing. It was the coolest thing to be able to move around freely with him. And, then every milestone was so exciting, we'd be like "WOW he just sat up all by himself! he must be a genius!" Such a fun ride, and I believe a tender mercy from Heavenly Father to help us relax and enjoy parenthood. So happy for you, and the blessings you will recieve from both your girls!