Glycogen Storage Disease – StarchWars

September

Posted on 18. Jan, 2010 by Jillian in Glycogen Storage Disease

September:

Trauma/Drama 1: Mark started 1^st grade, and Ethan began Kindergarten. Some people would say “Wow, your day just got easier, didn’t it?” and they’d be wrong. Now we had to pack med and lunch/ snack bags- double check them- and then run down to the school anything that we forgot to put in them- like, oh, test strips for the glucometer. Plus take the boys to the school, and pick Ethan up 3 hours later, then 3 ½ hours after that, pick up Mark.

The good news is we have an amazing school. I love the nurse, teachers, aides, principal, EVERYONE. The nurse’s care plans are excellent, and the kids are receiving great care. They’re out of the classroom as little as possible to receive treatment, and considering what the stress of school does to their blood sugars, everything is handled perfectly. Nevertheless, it’s a transition.

Trauma/Drama 2: We did neuropsych evals for all of the boys. (see previous post for Mark’s first eval).

What we learned: Jonny and Dallin needed to be in speech therapy- and preferably developmental pre-school as well, and we need to set up a 504 (at school) for Ethan.

Trauma/ Drama 3: Dallin got a half cast when he should have gotten the whole cast off, and he got a walking splint cast thingy when he should have been cast free.

What we reaffirmed: Never trust a doctor that thinks he knows about GSD when he’s never treated anyone with it.

Exciting Drama 4: Ethan had a birthday party.

What we learned: Pirate themed outdoor parties are best when inviting a bunch of rowdy 5-6 year olds, and water balloons make great “cannon balls”.

Exciting Drama 5: We packed for our trip to San Diego for my brother’s wedding.

What we learned: Packing for a 6 day trip takes a full week, and 168 pre-measured bags of cornstarch. Also, dividing them into each day and each night was very helpful.