Thank You!

April 14, 2010

Hi everyone. First, I wanted to thank all of you for the warm and supportive

welcome, I do appreciate it. I also do love the sense of humor you all seem to

have. I loved the comments about the pony tail being too tight and watery

breast milk! Classic.

Secondly, I thought I would share that we finally had our appointment with the

Neuro and the Neurosurgeon last week, and it went both good and bad. The

surgeon informed us that the cyst/tumor isn't actually a cyst. It is a very

large space where his brain is missing and spinal fluid has filled in the gap.

I started sobbing when he said this, because while I don't want my child to

undergo brain surgery, I was at least hoping that it would alleviate some of his

problems, but it just isn't to be. The surgeon was very nice and hugged me and

said if he could fix anything in " his very damaged brain " , he would do it in a

heartbeat. So, our next step will be a 2 plus night stay at the hospital for

seizure testing and monitoring. I am waiting for a call letting me know when.

As far as weight is concerned, Caiden has always struggled with maintaining

weight. While I expected him to end up being quite slim due to his Asian

heritage, he is just skinny. We have gone through a lot of Pediasure, shakes,

you name it. I've found that by letting him keep his bottle, we are finally

able to get his weight up and to maintain it. He is drinking approximately 2 a

day. He is currently 39 1/4 " tall, and fully clothed weighs 34 lbs. He turned

3 in December. Plus, he still uses a pacifier. Because of the neurological

issues he has, he has a difficult time self-soothing without it, so I've just

decided not to push the issue right now. He has enough going on. My fiance

(soon not to be) has major problems with it, but as I am the one who adopted

Caiden and not him, he doesn't get to say a lot about it. I am ultimately

responsible for his health and happiness, so I've just decided that I will be

the one making those

important decisions.

Also, for those who have children who are falling off the growth charts or also

possibly have Septo Optic Dysplasia like Caiden, check out the MAGIC website

(Major Aspects of Growth in Children). They have growth charts you can access,

plus literature you can download regarding growth issues. A lot of kids with

neurological issues are growth hormone deficient as well as thyroid deficient

and that can also effect growth.

Crystal

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