Friday, July 29, 2011

Old Friends

We recently had a visit from dear friends Carole and Jenny. We've been friends since 3rd grade! I haven't seen Jenn in 19 years as she lives in Washington state. She was in good 'ole NJ for a family wedding and drove up with Carole (5 hours each way!) to spend the afternoon with us. We had a wonderful time and of course Ambrose was the center of attention. He even got to enjoy a private bell concert! Thanks guys! Lots of love to you both!

Wednesday, July 20, 2011

My pot of gold

Look at how straight Ambrose's legs are at rest. Wearing his knee immobilizers every night is really making a difference!
Ambrose is doing well and has been making some public appearances as well as going for many walks.
He just had a bunch of doctor's appointments. He hasn't been to DHMC in 3-4 months, then all of his follow up appointments became due. There were so many , including an EEG and renal ultrasound, that we needed to go twice in the last two weeks. He has renal calcification. Calcium is building up in his kidneys. This causes the level of calcium in his blood to be low. It could eventually affect his kidney function, but it is not at this point. He was put on 2 diuretics to help keep the calcium in his system, while preserving his potassium as well. We will need to increase his fluid intake to compensate for this. He has also gone up on his thyroid medication, started on sodium flouride, and replaced one seizure med (Tri-leptal) with another (Gabapentin) based on his EEG. We will have to go back in a month for some follow up blood work.
He has also been approved for a wish (for lots of sensory toys & equipment) from the Make A Wish foundation. It is very exciting! With his visual and hearing impairments and limited mobility, it is hard to find things that Ambrose will respond to. There are many fabulous special needs toys out there, many of which are quite expensive, so it is wonderful to have this opportunity for Ambrose. I will post more about this in a few days as some of the items have begun arriving. Yeah!