RE: Thanks for support

[Guest guest]

,

At the time Alyssa's tube was placed she did eat by mouth. She was never a

big eater, but she liked a variety of foods and would eat small amounts

often. It was simply not enough. We tried her on Periactin for 3 months

before the procedure and though it did make her eat more, we simply didn't

feel it would be enough to allow her to catch up. Does that make sense.

She was in such a serious caloric deficit that even though she ate well on

the Periactin it wasn't enough for her to catch up. Also, Alyssa did not

have reflux and so only had a tube placed, she did not have the triple. We

have been fortunate that she did not develop reflux after the tube either.

It's funny when we look back at pics of Alyssa before her tube. We always

thought she looked so good. Sure she was petite :-) but she was

proportionate and she was so happy. I cannot even describe the change after

her tube. We never realized all of the energy conserving behavior she had.

She was behind in her gross motor skills, but I truly believe she just

didn't have the energy. If she was happy before she became absolutely

ecstatic after the tube. She played at the playground, she ran often and

now she NEVER slows down. We just didn't realize until after the surgery

what she had been missing. She is new child.

I know the decision is hard and you have a tough choice. Know that many of

us have been where you are and are here to support your decision whatever it

may be.

Dayna

_____

From: Berlin/Gene Bowen

Sent: Saturday, January 15, 2005 9:47 PM

To: RSS-Support

Subject: Thanks for support

I have not had a chance to write lately, but I wanted to thank everyone who

responded to my fears that we may be facing a feeding tube for Jonah and

possibly the triple procedure. I know if it has to be, it is the best thing

and we have come to terms with it. Pat, I know you have reassured me in the

past and I appreciate your support.

Dayna, I was wondering if Alyssa liked to eat when Dr. H. said that she

needed a feeding tube right away? Jonah only weighs about 16.4lbs and he is

almost three and a half. Jonah eats pretty well and likes food, so I wonder

if that is why Dr. H. has given us time to keep trying.

Anyway, thank you all for your advice and words of support.

, Jonah's mom