Wow! What a whirlwind 48 hours! We are still in Austin tonight. The conference just ended a few hours ago, but we decided to stay an extra night so we didn’t have to drive home late at night and exhausted. Good call on our part, huh? 🙂 I think so! I’m so glad we came. […]
[Continue reading...]Feeling down but ready to fight…
26 Jun by
I’m sitting here in our hotel room in Austin. Tomorrow morning is the beginning of the Texas Parent 2 Parent conference that I mentioned last week. I’m really glad to be here, because I am hoping to learn more useful tools to help us learn to navigate the “system” as well as learn to be […]
[Continue reading...]Great physical therapy day!
25 Jun by
Hannah had a great, great PT day again today! I tell ya, Ms. Pam, the therapist, definitely knows how to work with Hannah. Hannah has been using her Surestep orthotics for about a week now, and today was her first day using them in PT. We worked on getting on to her knees and balancing […]
[Continue reading...]Greyson’s Law celebration and a bit of a scare last night!
22 Jun by
Even though we have only known each other about 6 months or so, I really feel like I have connected with Nicole, Grey’s mom. We met via blogs back then, and then we met in person last month. She is more awesome in person than she is online! It was also a celebration of her […]
[Continue reading...]Worsening eye movements
21 Jun by
We met with Dr. B., Hannah’s pediatrician, on Friday for her monthly check-up. Her head circumference growth seems to have leveled off and actually didn’t change in the past 3 weeks. This is good news in hopes that she does not have hydrocephalus! We will still probably be doing an MRI of the brain at […]
[Continue reading...]Mutations for Gaucher disease linked to high risk of Parkinson’s disease
20 Jun by
http://www.phgfoundation.org/news/4676/ What’s the connection between Gaucher disease, a rare single gene disorder of metabolism that appears during childhood, and Parkinson’s disease, a common multifactorial disorder of the nervous system that occurs late in life? The answer lies in just a single gene (glucocerebrosidase or GBA), which encodes an enzyme required for lipid metabolism and storage […]
[Continue reading...]
Latest Comments