Update

[Guest guest]

Hello everyone,

Spencer got home from the hospital the end of last week. Sorry it has

taken so long to update y'all, but we are really not finished with all of

the doctors yet and it has been crazy. We just came back from Pittsburgh

to have him be seen by his GI there. Spencer has lost weight. He was up

to 20 lbs. He is now 18 lbs 9 oz. Dr. Putnam say's that he will continue

to loose weight. At least two or three pounds. Aghhhh......this is very

frustrating to me as that would put him in at 15 lbs 9 oz. This would be

less than when he was when we first came to see Dr. Putnam in July. His

height is very interesting as well. He is 28 inches tall. He has grown

only 1 cm in 4 months. Normal weight for his age would be 24-29 lbs and

height would be 34-39 inches tall. This is why we get so many comments

about him, cause he is so short. Spencer is a real characture. He likes

to pose for everyone. He will put one arm out and lean it on a chair and

then put the other arm on his hip and then cross his feet, just like he is

posing for a photo shoot or something. It is very funny. The other day

someone said wow you are walking early......you must be 6 months or so.

Try two years. I just love those comments. You would think that we

wouldn't get too many comments when we go to the Children's hospital cause

they are used to sick kids. Well I think every step we take there is

someone making some sort of comment.

Since his biopsies were soooo good we have decided to start tappering his

steroids. Very slowly. .3 cc's per week. To get him completely off of

the steroids it will take 4 months. We are expecting that he will not do

well with this and that we will have to restart it full strength, as this

is what happened the last time we tried to tapper. If we can not

successfully get him off steroid's and/or he still can not gain weight/grow

enough then we will be forced to put him back on the IV TPN. It would be

great though if we could get him off of the steroids and just have to do

TPN because Dr. Putnam told us that when he is on steroid's it makes it

nearly impossible for his body to fight off any type of infection. So it

is likely that we would not be in the hospital nealy as much with line

infections if we got off of the steroid's at least.

Last but not least............Primary Children's Medical Center is still

convinced that he has Russel Silver Syndrome and they are doing a study on

Spencer. They will be featuring him at a medical conference as well as

putting his whole medical history and picture in a medical journal and in

the reference book for genetic syndrome's. I think that it is pretty

funny, since he has been examed by three other genetisit's (including the

leading expert in RSS) that all say he does not have it. Dr. Putnam thinks

it is pretty funny that they are doing this and he really doesn't have it.

When I told him he just shook his head and laughed.

Well, It think that is about all of the new's as of late. I will keep you

all posted as soon as something else happen's. Thank you all for your

continued support and for those who have written me and called

me......Thank you.

Love,

Mum to Spencer

.allred@...