Dani has recovered nicely from her hip reconstruction surgery. We go for a follow up on Sept 24th to make sure the bone grafts are still looking good. She has woke up upset the last three nights. This morning she said her arms, legs, head, and belly hurt. Once she got up she was acting ok though. I'll be keeping an eye on that.
She is getting another IVIG infusion tomorrow with Daddy. I knew we were pushing it hoping to skip two months in a row. Oh well ... we will keep trying.
She has a cardiology appt in October. We might be discussing heart surgery if her valves are leaking more. There was quite a jump with our February visit from the previous one.
As many of you know she started Kindergarten a few weeks ago. I have been very impressed with the school district's handling of this process. She is in a regular classroom and has different therapist/teachers/aides helping her through out the day/week when needed through what they have labeled as "The Special School District". SSD was who we went through for her two years of preschool. The IEP meeting went wonderfully and thanks to the boys I know the principal/staff quite well.
Gabe is now in High School and doing really well and likes it. He did his first powerpoint presentation this week and everyone was impressed. Ethan started Middle School and loves how big the library is. It didn't open right away and he was very impatient waiting to see all of it.
Dani has a very rare genetic disorder call Hurler's Syndrome or MPS I. Its part of a group of storage disorders called Lysosomal Storage Disorders. You can find out more information at MPSSociety.org You can see the first part of her journey on danicaboni.blogspot.com. This is the beginning of a new journey.
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