Well VEPTR surgery it is

We had our follow up with the orthopedic surgeon yesterday to go over the MRI results (spine is normal). His curve has increased pretty dramatically in the last few months because he's just growing so fast. (from 31 degrees to 50) So next week we are going to set up a date for VEPTR surgery. (check out veptr.com i think which gives a lot of great info on it - they are also called titanium ribs) It will be early summer he thinks. We are scared but really excited. It sounds like it will do wonders for our little man and give him a chance at straightness. :) He'll have to be in the hospital for about a week, which is going to be pretty crazy. He's so wild right now I can't imagine keeping him couped up in the hospital for that long without him screaming and running through the halls. I am hoping it will help his speech too to get him straightened out some with this procedure. Sorry its a crazy ramble, I'm just thinking out loud I guess.

He's up to 22 lbs and they said like 32 inches (but i swear they never really take the time to measure him correctly unless you are at the endocrinology office). He was supposed to have another sleep study at the hospital to check for apnea but he was sick and snotty and so we rescheduled for May. Boy oh boy its shaping up to be a wild and fast spring.

These flipping glasses . . .

Short of duct taping them to Isaac's face our time in glasses is short. The boy is not a fan. We've had them since December, and its such a battle! Well last week the doctor prescribed us some drops to dilate his eyes so that he'll have to wear his glasses in order to see. Which like most things we are told to do with Isaac sounds similar to baby torture. :) But by george it worked. But his poor eyes stay dilated forever. I'm still thinking of getting the soft rubber ones instead of what we have so that he won't be able to look over them instead of through them. This is just a blubbering rant I know. I could use a nap. :)
Oh and the boy stood by himself for like 10 seconds today - it was AWESOME. We are so close to walking it scares me!!!!!

What we've been up to lately

Showing Lucy how its done

Protecting Lucy from Gus the pug

Getting dressed up for a wedding




Listening to cousin Georgia tell him stories

Ah, nothing like some easter hives to start off spring . . .

Good Friday was gorgeous and near 90 here in WV. Me and the little ones were outside on a blanket enjoying the lovely weather & pollen all day long. :) Then my mom and dad brought two little ducks for Isaac & Lucy for Easter. They loved them - the ducks followed us all around our yard and were so cute. Fast forward to Saturday morning when Isaac woke up with the worst case of hives I've ever seen - which is saying a lot since my oldest brother used to get hives all the time. I'd post a picture but its just plain gross, poor kid. After benadryling him to death we finally took him to the pedi on Monday and got some Prednisone which cleared it right up. Thank God. So instead of Easter sunday festivities we stayed inside in our diaper itching & scratching. Poor little guy. He's really moving though lately so I think more steroids would be welcomed!

He crawled!!!!

Isaac crawled today for the first time on all fours. He had army crawled occasionally but this was the real deal on hands and knees!! He crawled to his therapist Bridget. She asked how long he'd been crawling, and I was like he hasn't been. :)

I'm so excited! I like to think that the Creatine is helping. That and having a new little sister has forced him to want to be more mobile since I can't pick him up all the time now. I am just really excited for the little guy. I am going to try to videotape it and see if I can put it on here. :)

MRI=Success

The MRI went well - we should meet with the Orthopedist late April to discuss the results and talk about VEPTR surgery. Isaac was a flirt with the nurses - we even left him with his main nurse and went to lunch (it was a long, long, long, long, long day) which we've never even considered before, but he was seriously in love with her and happy as a clam. Oh plus she gave him toys and blew bubbles for him. He still weighs just 20 lbs. the little goofy man. His sister weighs 13+ at only 2 months. :)

Side Note: We put the little man in a toddler bed and he absolutely loves it. He gets out and plays with his toys. I really think its going to spur him on to walking. He cruises all over - but actual walking hasn't happened yet. This may be just the ticket.

Welcome Spring!

My boy is 20 months old - 20 months and 20 lbs. :) Finally! We are still on .4 mg hgh, but we are heading in the right direction. Our Dr. Hardin left Columbus Childrens' Hospital - so we are freaking out a little because the endocrinologist we saw on Friday was well, kinda douchey. Yep, that's the best way to describe him I think. So we really want to get the VEPTR surgery there but things are not looking good for us in the way of the PWS clinic - its going to be more like we'd see a hodge podge of whatever endocrinologist is there that day - and I don't think I'm wanting my kids future to be guided by a new doctor every couple of months. Oh and he isn't big on appointments all that often -so we lost the aggressive approach that Dr. Hardin advocated. Come back Dr. Hardin, or sadly I'll have to google stalk you and follow you to your new hospital with Isaac. :)