Wednesday, February 24, 2010

These two pictures show how Isaac feels since Lucy arrived - Picture 1: Why is she still here? Picture Two: She stole my bed. Now I have to sleep with the kitties. :) In reality he's still as spoiled as ever, but he'd like us to think he's terribly neglected because of this new Lucy creature.
side note: New PT tomorrow! Excited. and a little scared . . .


Last Friday we had an MRI of Isaac's spine scheduled at Children's Hospital - 3 hours away. Two hours into the trip (around 12:30) my goofy child (who hadn't eaten anything since 7 in the morning) finds a month old cracker stuffed in with his toys in the car and crams it into his mouth. So yeah, we called, and no, the MRI didn't happen. Even one bite is too dangerous for the sedation. So we are rescheduled for late March, and hopefully we'll clean our car out by then. :)

Wednesday, February 10, 2010

Good Morning Mom!

So the last two mornings I've been greeted by a little boy standing up in his crib at 5 in the morning. The big boy is standing up and holding on to the railing staring at me. He has been kind of off sleepwise because he's been sick, but its so funny to see him standing there when I come in so early. It makes me very excited! Plus we are getting a new PT soon so I'm excited for a change and to see how he'll do with someone new!

His MRI of the spine is scheduled for next week, so hopefully that goes well. Time is flying by! The endocrinologist was concerned about his weight since he hasn't really gained any in months (He weighed 18 lbs and 14 oz at the Pedi's 18 month appt) I guess she's concerned we are going to have a very very skinny giant soon on the growth hormone. I follow the child with a spoon and fork and food all day long stuffing his mouth at every opportunity. It is hard!!

Monday, February 1, 2010

Orthopedic Appt with Dr. Willits

Well we found out Isaac definitely has scoliosis - and will need some surgery to help fix it. Dr. Willits told us that we will need to have a VEPTR device hooked up to his spine to help it lengthen and grow properly. He has a curve of 31 degrees right now. He said that a brace will not help Isaac's curve because it is a neuromuscular curve and with his low tone a brace will just hurt other things like his lungs and kidneys and they won't be able to grow properly because they are being scrunched in. So this VEPTR device, which is relatively new and is only performed in like 5 or 6 hospitals in the country will help him grow. He'll have to have it in until he's like 12 or 13 and will need to be adjusted every 6 months through an outpatient procedure. The initial surgery is supposed to be pretty intensive and he may need to be in the hospital for days afterwards to be monitored. So its a little overwhelming, but I swear if it helps this boy we would agree to whatever!!! He's such a sweetie. He's a messy little thing, but sweet nonetheless. :)