PCH Meet Up

Sorry I didn't write this week! Honestly it's been a hard week and a half. I came down with some pretty serious symptoms and found out that I have a thyroid problem. My TSH levels were almost undetectable. I've had my thyroid checked twice in the last 3 years and it was fine, so we don't yet know if this is temporary or not. Anyways that's my excuse for not writing ;-)

• But best part of last week was the Utah PCH meet up! We got to meet up with 6 PCH children (and families) from our support group! Three of them were new friends! It was so amazing meeting these families and supporting each other! Here are the pictures :-)

(and just in case you're wondering, all these PCH kids have been diagnosed with pontocerrebellar hypoplasia, but only one has the same type and mutation as Sophie. He's in the blue behind me in that first picture ;-)