Re: [TMIC] (TMIC)-My son's story.

CLARISSA CARNEY (carney(AT)cyberhighway.net)
Wed, 12 May 1999 16:35:40 -0700

MY NAME IS CLARISSA AND I HAVE ASON WHO WAS DIAGNOSED IN NOV 1998. HE
IS NOW 14 MONTHS OLD. HE WAS PARALIZED FROM THE WAIST DOWN. HE WAS
GIVEN THE IV STERIIODS AND WAS KEPT IN THE HOSPITAL FOR A WEEK. WE
FIRST SAW THE RETURN OF MOVEMENT IN HIS LEGS IN THE BATHTUB. THEY
DIDN'T PUT HIM IN REHAB BECAUSE HE WAS SO YOUNG. THEY THOUGHT THAT HE
MIGHT NOT THRIVE IN THE HOSPITAL ENVIRONMENT. WE GO TO PHYSICAL THERAPY
TWICE A WEEK AND HE IS INVOLVED WITH THE H.A.P.P.Y. PROGRAM. HE CAN
CRAWL AND PULL HIMSELF UP ON THE FURNITURE. HE CAN WALK WITH THE WALKER
BUT HE SCISSRS REAL BAD. THEY TRIED BRACES BUT THEY AREN'T MAKING A
SIGNIFICANT DIFFERENCE. HE TURNS HIS HIP IN WHEN HE WALKS. THE
THERAPIST WANTS US TO WAIT AND SEE WHAT DEVELOPES BUT I AM CONCERNED
THAT HE WILL DO PERMANENT DAMAGE TO HIS HIPS. IF YOU HAVE ANY
SUGGESTIONS THEY WOULD BE APPRECIATED. I WILL TRY AND ANSWER ANY
QUESTIONS THAT YOU MIGHT HAVE. IT IS REAL HARD TO FIND PARENTS OF
CHILDREN WITH TM. I HOPE THAT THIS FINDS YOUR FAMILY WELL.

AndDan22(AT)aol.com wrote:
>
> Hello all,
> I have been reading everyone's letters, and thought it was time to add one to
> the list. My son, Andrew is 3yrs old now, and was Dx with Acute Transverse
> Myelitis in Jan '98. He was paralyzed from the shoulders down. They did the
> steroid tx initially, and started rehab quickly. We saw his fingers and toes
> start to wiggle after about 2 wks. Gradually, very gradually, things have
> been improving. He is walking with a little walker now, and crawls, and is
> starting to pull up to furniture. He does still have a trach, he was on the
> ventilator for 2 months. He weaned off the ventilator easily after his
> diaphragm started working again. We do GT feedings because he does not eat
> enough by mouth. As I have seen the abdominal problems we are having are not
> uncommon, and we thought it was a problem with formula or just GT problems.
> Andrew does very well communicating to us what he wants by mouthing words,
> and we are learning some sign language. I am amazed with how much
> determination Andrew has. He wants to do whatever his older brother, Daniel,
> is doing. I was wondering if you have seen any other children stories about
> things like this? I will continue to watch what is going on with the list.
> Good luck to everyone. Take Care.
> Andrew's Mom,
> Carla Marts