Major Developments - MAJOR!

I've been hesitant to post about my little fella's um WALKING, but listen people he just turned 22 months and he's all over the place. He took the first few divey like steps weeks ago. He took 3 for his OT Sonya, and then a few more for his therapist Bridget, but I never really "counted" those steps I guess. I guess I was waiting for him just to take off on his own and do it. Week after week he's become a little more stable. Today in PT he crawled across the room pulled himself up to the ottoman and then proceeded to take 9 unassisted steps to the PT. This unprovoked walking is quite new and quite AMAZING. He really is walking. He's done it all day, from ottoman to chair, from chair to me.

Always before he leaves one of our hands and is coaxed into walking to someone or something, or to chase after something he wants. To see him actually just take off walking on his own seriously brings a tear to my eye. I didn't really get emotional while the PT was here, but I am a little now thinking about it.

I just think back to when he was born and we didn't even know what he had. We didn't think he'd ever walk. Then we got a diagnosis of PWS, and still thought, what will his walking be like one day and when will it ever happen? That seems like yesterday and to look at my little goofball sitting in the floor pretending to read the little engine that could (babbling to himself and pointing) right now makes me really proud. He's come so far and is doing so well. I know the food part of this disorder is still to come and still pretty messed up if you ask me. But not one single thing we've had to go through so far has been bad really, just different.

My mom has a sign up in her house that says: God doesn't change the circumstances of our lives, he just changes our attitudes towards them. I guess today I'm feeling especially blessed. :) Of course call me after he has this VEPTR surgery August 18th, and I'm sure we'll be a mess, but oh well, its baby steps this process.

New pictures

Super Pudgy Lucy who is now 4 months old!

His new glasses from the side

Cute boy in his new glasses

Success with the Glasses - Yay Miraflex!

We got his stylin new glasses - actually he looks like the painter on Yo Gabba Gabba - and he has worn them nearly all day for the past two days!!! Its awesome. And they fit well on the nose so that really helps. I'll post a picture soon.

Sweet Jealousy :)

Bear with me its sideways. So this was Lucy playing in "Isaac's" Jumper. He got a little jealous and started bouncing outside the jumper. I'm going to try to do better next time and remember not to turn the camera sideways. :)

So now here's Isaac's turn in the jumper now that he's about 2 feet too tall for it. :)

May need a helmet :) Spiderman preferably

So my boy wants to walk. ALL the TIME - everywhere. Can he walk yet? Not really. He can cruise and get brave, and walk holding one of your fingers, or your whole hand if he's tired. The thing is, he thinks he can walk. So he takes off, and repeatedly face plants into something or hits his poor little head on stuff. Its awesome, and exciting, and sad all at the same time. I'm like go little boy go, then oh honey I'm sorry I didn't catch you in time. Oh I'm not just letting him wander out there mind you - I do catch him 99 percent of the time, but that 1% I miss is going to get him a concussion by george. He's doing so great though. His PT has been off for about a month because she had a surgery and she was so impressed with his progress while she was gone. He's doing soooo much. I'm in definite trouble. :) Oh its 85 here and gorgeous today (yeah i'm rubbing it in to anyone in cold weather) :)

My boy is a ladies man

Isaac and his Grandma Cindy

Getting ready to smooch on his Auntie Bebo

Loving on his cousin Jamie

Loving on his cousin Jessica

Me and my little man (with my hubby & little Lucy in the background)


This boy manipulates the ladies to get his way - that is for sure! He charms nurses and kisses all pretty gals. He twirls their hair and um, gets all up in your business when you hold him. (Sorry Aunt Debbie) He's a little touchy feely :) So watch out ladies - My boy will probably start dating in like 10 years :)!

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.