Friday, November 30, 2012

Derotation surgery

After much anguish and anxiety, we decided to move foward with the derotation surgery. It has now been 2 weeks since surgery and I'm happy to say things are going great! Grayson has been in little to no pain. He's totally ok with being in casts and unable to walk or stand. We thought this would be the most difficult part of the surgery. Grayson loves walking. I really can't believe how content he is sitting or scooting around. He hasn't even tried to stand or walk...he just knows he can't. He points to his casts and says, "Boo boos". It's so cute!!

Yesterday we saw ortho for a two week check up. He took X-rays to see how Grayson's legs are healing. The dr. said he had enough helping to go down from full leg to short, below the knee casts! Yay! Grayson can now crawl around and we can work on keeping his hamstrings, glutes, and hips strong in pt. We go back in two weeks again to check on his progress. Dr. says if he has enough healing, he will remove the pins and Grayson can go down to just afos full time :) If not, he has 2 more weeks in casts. So please say a prayer that he's healed enough for afos in 2 weeks!

Here's some pictures before and after surgery:

The day before surgery (you can see how turned in his feet are):

Day of surgery/another shot of how turned in he was:

Right after surgery (we had to stay overnight in the hospital):

Little man on the move...he scooted out of the playroom, opened the sliding glass door, and scooted out into the yard...
(1 week post op):

Laughing when the casts were being cut off saying, "That tickles"!
(2 weeks post op):

View of legs nice and straight before being re-casted in short casts
(2 weeks post op):

Saturday, November 10, 2012


Last month was the annual walk n roll here in Orlando. This year we decided to team up with another family. Our team name was G2. Together we raised over $5000! It was such a fun day! We had a blast hanging out with all our SB family! Here's a few of our team pictures :)

Grayson with his campaign poster:

Team G2: (Photos courtesy of Amanda Kern Photography)

Grayson, Gabriel, and Lyla :)

New Braces & Upcoming Surgery

Grayson continues to do great and simply amazes us with his determination. He is walking backwards now and spinning around. He's trying so hard to run but just isn't quite there yet.

Last month we got a new type of afos. They are Allard's Baby Gait afos. They are made of carbon fiber...the stuff prosthetic running blades are made of. We love them! They help Grayson lock his knees and the carbon fiber puts a little "pep in his step". We are so much happier with these than any of the plastic style afos we've had in the past. And I love that they look like black shin guards. Plus, it's a nice bonus that they protect his shins. He was getting bruised from all his climbing quite often in his Dafos.

Even though Grayson is doing fantastic and walking really well for almost a year now, we still haven't been able to resolve the  rotation issues. His feet turn in...a lot. It's scary how much they turn in, he can even turn his feet completely backwards :/. We had hoped that with time and walking we'd see some improvement but we haven' all and it's been over a year. So our ortho recommended last month we do the derotation surgery on both legs. So on Wednesday he will be having surgery to correct his legs. Ortho measured the amount of torsion at clinic in his pre-op last week...his left leg needs 65 degrees of correction and the right leg needs 45 degrees of correction. Yep, that's A LOT! Since he's so rotated the dr. will have to cut both the tibia and fibula bones in order to correct them. He will cut the bones, turn Grayson's feet straight,and pin the bones....4-6 week in leg casts. We're supposed to keep him off his feet as much as possible during those 4 weeks. Which should be real interesting seeing as he constantly is walking and climbing. So say a prayer the surgery goes well, that he heals quickly, and that by Christmas he's out of casts and back walking everywhere.

Last week we had clinic. Grayson continues to do great! Urology said no changes to his kidneys and bladder. Grayson is still emptying on his own. Senna is controlling the bowels great. At times Grayson is telling us when he needs to go so we are hopeful for future "potty training".  We only have to see neuro once a year since his vents have remained stable and in normal limits. GI still can't find a cause for all the vomiting during mealtimes. We think its due to anxiety so we are pursuing a psychologist that can hopefully help us relieve his mealtime/eating anxiety. Pt thinks he looks fantastic and OT wants to try some sensory stuff with him. Usually eating issues are related to some sort of sensory related issues. So they are suggesting trying a whole body approach using brushes and applying pressure to certain areas. This is supposed to help with any sensory related issues he may have and the hope is it will help relieve some anxiety and help Grayson begin to accept real food, not purees. Sigh....who'd of thought our biggest issue wouldn't be the SB stuff, but eating!!

It seems like ever since Grayson turned 2 he has been learning new stuff so incredibly fast! He now knows and the letters and letter sounds, all the colors, a few shapes and numbers, and is working on counting to 10. His vocabulary is phenomenal...over 250 words. He is FINALLY beginning to put two words together. We have been working on this for about 6 months it seems like. But the past week he's been using 2 word sentences a few times day, increasing his frequency. I think he might finally be getting it, lol!

Yep, this kid is AMAZING!!! :)