I found out some very interesting info yesterday.
I was googling the pediatric cardiologist Blake was referred to, and it turns out he came to Devos Children's Hospital from none other than Texas Children's Hospital-the very same hospital that is doing the research study on Potocki-Lupski syndrome.
Out of all the doctors we could have been referred to, we get (possibly) the only one in this area that may be familiar with this syndrome? He should know exactly what to look for!
That's not just luck or coincidence-that's someone looking out for us. For the first time I feel very calm about this whole heart thing. I feel like everything is going to be okay.
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Blakie finally has a diagnosis. After a year and a half of tests and being misdiagnosed with Cerebral Palsy, genetic testing confirms he has a rare syndrome called Potocki-Lupski, or PTLS. There is very little known about this condition. So what now? Where do we go from here? And what will Blake's life be like with PTLS?
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For information about Potocki-Lupski syndrome
About Me
- Katey Berry
- I am a 31 year old mom/stepmom to 6 (yes, 6!)beautiful children. I plan to someday soon return to school and pursue my degree in nursing.
3 comments:
Oh Katey. I am so happy you are feeling more calm and at peace. I pray for that little guy and you guys! and hearing I love you is wonderful. Sending prayers your way!
Kishelle
I'm crying again! LOL. I've told you a hundred times, but I'm so proud of you, Katey. You're doing an amazing job, and this just goes to show you that it's not going unrewarded, or unnoticed. Blake is lucky to have you for his mommy.
I have been telling you it will be ok. I'm glad you're starting to believe it too.
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