Saturday, May 30, 2009

Chase's New Hot Rod

I would like to introduce you tooooo.......Chase's very own, Ottobock the hottest colors you'll be seeing on runways in Milan this year, cool gray (the new black) with a splash of racing orange. Notice the detailing in the design, the wearabilty for the everyday toddler...

We are really in love with the indoor base. You can adjust it to any height, and it takes up so much LESS space than the regular wheeled base. it's more like a computer chair base would be, and he still gets the posture support. He sat at Dave's computer last night and watched Elmo videos for the first time. (The indoor base will stay at home all the time, the outdoor base travels wherever we go.)

Normally the sun cover will stay in the van, but we had to show it off, and he was having a great time playing under it!

This gives you a better view of the indoor base...

We also got the plans from the architect this week and are now getting in contact with contractors for bids.

I got a call from Johns Hopkins yesterday, Friday, the Medical Director went over his records and said if Chase were his child he would take him to the Kennedy Krieger Institute which is on the same campus, and seems to be the "Brain center" there. I had an hour long conversation with them yesterday. Our records are now going to Dr. Hoon who Chase will be seeing there, and he will decide any other doctors he wants Chase to see. We should know when we're going no later than Wednesday. (((FYI for anyone interested: Dr. Hoon is the Director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Kennedy Krieger Institute. He is also Medical Director of the Carter Center for Holoprosencephaly and Related Disorders at Johns Hopkins and Kennedy Krieger Institute, and is an attending physician at Kennedy Krieger Children’s Hospital and Johns Hopkins Children’s Center.)))

Chase's titers for EBV (mono) came back positive, which means he has it, but doesn't mean he has it now. Frustrating huh? It MIGHT mean he was just getting over it. But it might not. He still isn't himself. He is still having late night choking episodes because he's having such heavy build up in his lungs and has such a hard time clearing it himself.

Well I'm off to a Saturday morning MRI. I'm holding off neck surgery for at least a year, they have a new procedure that isn't FDA approved yet but I am SO willing to wait for! They will be able to put artificial discs in instead of more fusing and titanium plates! I won't lose any more movement! I was like, Heck yeah I can wait!

Gotta run, have a great weekend!!!!!


  1. awesome chair and he looks like he loves it! He's getting so big! I think he's passed up Zoe in height and weight!

  2. height maybe...he's 34"...but weight...they want him to gain 6 or 7 POUNDS to be ideal for his height! He's 20 lbs. 8 oz... We're working on it!!! What's Zoe up to?