Thursday, December 15, 2011

SB clinic & Update

Wow! It sure how been a while since I've updated this blog!! So much has changed! Grayson is now walking holding onto one of our hands. Balance is still a struggle for him at this time but we are working hard on it. We joke and tell Grayson that he has 2 more months to start taking independent steps. He hasn't missed a milestone yet, and most kids walk independently at 18 months (he's 16 months now). Although, I think he will miss this milestone, we still remind him that we "expect" him to at least be trying to take a step independently. ;) We've been really trying to get him to stand on his own too, but he still wants the comfort of holding onto something, even though he doesn't need to. Right now we are battling a lack of confidence he has in himself. Grayson is now in his AFOs full time as well as detrotaion straps (from Sure Step) to hold his feet in the correct place. His tibial torsion hasn't improved any yet, but he's really just now beginning to stand and walk alot. So still hoping that it will improve in the next few years so we can avoid a surgery. But we absolutely LOVE the derotation straps. They make an unbelievable difference for him. =)

Last Friday we attended SB clinic. Wow! It was our best clinic yet! Our urologist said his kidneys and bladder look perfect and the reflux he had on the one side was gone! Yay!! Awesome news =) Ortho said Grayson's hip has improved "significantly" and for a SB kid he said he's never seen such improvement in a 6 month period! Great news! Its only about 6 degrees from where it should be and his socket is twice the size it was 6 months ago. So, more time in the hip abduction brace but at least its doing the job its supposed to (and Grayson doesn't mind). And for once Grayson was actually cooperative. He kicked for the doctor when asked and showed him his great leg movement. Ortho was very impressed with his walking, especially since he last saw him in September and he was barely even starting to walk. We also saw a pediatric physicist. She said Grayson looked really good and was impressed with how well he is doing. She said as far as SB kids go, he's "at the top". =) Yes, we LOVED hearing that! We didn't get to see Neuro since he is no longer part of our SB clinic. He is now only practicing at one hospital where he is the director of pediatric neurology. But his MRI in August showed his head still was stable and there was no concerns there. All in all, everyone was thrilled to see his progress, as are we! We are still in absolute shock that our little man who functions at L4-L5 is doing so well!

We have recently saw some new movement in Grayson's legs. He hasn't ever really shown any signs of hamstrings or hip extensors before. But in the past month we've caught him numerous times lying on his stomach lifting his legs (lifting his feet towards his cute little booty).  And when we lift him in the air on his tummy, he can pull his legs up straight instead of them just dangling. So exciting!

We also signed Grayson up for Intensive Physical Therapy starting in January. He will go to pt every day for 2 hours over a 3 week period. The goal is to focus on strengthening lower abs, hamstrings, glutes, and hip extensors. He will also spend time on the non-weighted treadmill where they will work on the correct walking pattern--stepping heel to toe. Additionally, they'll be working on his balance. We are very excited to give this program a try. We've heard some wonderful things about it!

Last week we started Grayson on a new bowel management program. He's been taking miralax for over a year now to help with constipation. After watching Dr. Levitt's Live chat  we started using a senna instead.! Instead of going all day long, Grayson now is going once a day. Awesomeness! We give him a dose of Little Tummies Senna before bed each night and once he wakes up in the morning he empties out the system and then he's clean the rest of the day. So, so nice! I wish someone had told me about this senna months ago!

Grayson is keeping us plenty busy! He's your typical 16 month old...into everything and always on the go! He still has a love affection for our cats. He is constantly harassing them, pulling their tails and pulling out tufts of fur. These cats are so good with him. We can't believe how they just lay there and tolerate it! The kitten (who's not a kitten anymore) often naps with him in his crib. I find them in there together quite often and its so cute! Grayson's new favorite thing to do is pull ornaments off the tree and throw it to the cat so he can play with it. He's obsessed with walking and is always tugging on my pant leg so he can walk along with me. =) Oh, and we've began the toddler temper tantrum stage when he doesn't get his way! Full on hitting, biting, scratching, and pinching! He is beginning to talk more and says 7-8 words (his favorite right now is mama), a few animal sounds, and 7-8 signs. One of my favorite things is when he mimics my facial expressions...super cute especially when I'm giving him a "mad" look because he done something he shouldn't. So hard to keep a straight face when he gives me the mad look back =). Grayson is beginning to eat better. Loves his pediasure and is starting to accept foods off a spoon again. He still nibbles on finger foods but doesn't eat really enough of anything to matter. Right now he's living off pediasure. Our pediatrician wants him to stay on it till at least 18 months. Hoping he'll gain some weight. So far, he hasn't gained a single ounce in four months! 700 calories a day and this kid doesn't gain weight! He is go-go-go! Guess he's burning it all off!

Here's Grayson cruising along one-handed:

Supposedly "napping":

Enjoying the Fall weather in Georgia:

Showing off his walking skills at Walk-N-Roll Orlando:

Visiting Santa:

A sneak peak at him walking: