Zoey (this is kind of long..sorry about that)

[Guest guest]

Hi everyone, I haven't posted here in a long time I just wanted

to give you an update on my baby girl Zoey and ask a bunch of

questions as well First of all, if you remember a while back the

genetics doctor that I went to said that Zoey did not have CHARGE

syndrome. She said that her " ears were too pretty. " To date, Zoey

has profound hearing loss (bilateral), Coloboma of the retina/macula

in her right eye, 2 Ventricular septal defects, and she is not on

the charts for weight! I still think that even though her ears

are " pretty " it seems mighty suspect of CHARGE..even if it is very

mild. All of the genetics testing that she did came back normal.

Now that Zoey is just a few days away from being 4 months old...the

doctors are starting to believe me that Zoey's vision (even in

her " good " eye) is NOT normal. She does NOT track anything. Not at

all! She appears to be looking at EVERYTHING but even when you put

your finger right up to her eyeball, she doesn't blink. I mentioned

CVI to the audiology people and they told me to ask the pediatric

opthalmologist about it. We have been waiting for months for that

visit and it is scheduled for this Thursday.

Zoey just had a visit last week from the folks at the regional

center. They came and evaluated her and appeared stumped. They rated

her development at less than a one month old child. I guess that

this could be a good thing in that she might get some services from

them, but it didn't seem very accurate. Zoey has really poor head

control, so she lost a lot of points there. She should have been

evaluated by someone familiar with the development of a deaf/blind

child. I know that Zoey is very smart and she communicates with me

through all of her funny little movements. I am looking forward to

seeing what kind of therapists they want to send to the house.

Zoey's pediatrician ordered some blood tests to check her thyroid

levels and other basic things. He then re-tested her because he said

that something concerned with calcium and bone growth came back

really high. Forgive me for not remembering the name. The diagnoses

code on the lab paper was for ricketts. He said that her calcium

levels in the blood were really high and that he was concerned about

a vitamin D deficiency. Does any of this sound familiar to you all?

I was totally confused.

To wrap it up..Zoey still has a big question mark on her. The docs

don't know what she has or even to what extent she has vision. They

don't know why she is so tiny and don't know why she can't hold up

her head. Do any of you have any thought on her? Thanks so much,

April (mom to Zoey 12-23-02, and mom to Jordan 12-22-96)