Kieran Update

[Guest guest]

Kieran is going for cast 9 at SLC Shriners Wednesday January 11. He has been

cast since he was 20.5 months old with an initial curve of 85 degrees, rotation

of 90 degrees and RVAD of 110. He has had problems with his spine and ribs

since birth. He still has no other issues.

Kieran is now three and a half. He has been fully potty trained, including

night trained since he was 2. He pulls his own pants up and down. He is not

good at wiping himself due to not being able to reach well so we help him.

Kieran loves the cast saw. He thinks it's neat and sits calmly and patiently

while they remove his cast. Afterwards he walks around the room with his

massive curve, rotation and other thoracic contortions saying to me, " mom, just

let me wiggle a little. " He is most stable in his cast.

Today I convinced him to lead up a step with his left instead of his right leg

and he almost fell down the stairs. He tried a few more and found he did not

have the ability to take the stairs that way. I would like to work on this with

him but think that doing stairs with his left leg leading is not the right place

to start. I have no idea where to start and I am baffled by his extreme

scoliosis. His standing in cast curve was a little over 40 degrees or so last

cast with a very, very high RVAD -- his ribs are pointing up on the right side

and nearly straight down on the left. This is his biggest challenge with his

scoliosis aside from the number of years he is clocking with severe scoliosis.

I have no idea where to begin to improve his situation any better, I just know

that I have no interest in surgery for him.

So we'll keep going and hope that whatever we do it works.

Kieran is in preschool, swims quite a bit in a dry suit, likes skating lessons,

although I have yet to take him just by myself, and to dance. He hopes to play

soccer.

I hope all of you and your kids are doing as well as could be expected under

whatever circumstances prevail. Happy New Year to Everyone!

I will post how Kieran does in cast 9. First cast I feel I am just waiting to

hear the numbers instead of having my heart set on one that I never get to hear.

Although that may change between now and when the doctor measures his curve on

the xray next week.

Take care and all the best to everyone!

Shauna

mother of Kieran, , and Kelsey Leamy