Ann Marie and

[Guest guest]

Happy belated birthday!

We just came from Dane's appointment with for tort. I was

hoping he would be deemed resolved today. He is having trouble

looking up left and reaching with his left arm. I never realized

this. He holds his head midline and his range is good, he just

doesn't have complete stamina. I am so ticked too. Dane was

discharged from another PT in January who I think is the head of the

PT Dept. I am so mad at the dr. who didn't send us to in the

first place. This is the same dr. who said he wouldn't refer us for

a band because it was " unethical " prior to 10-12 months.

said it's not a big deal and it will be taken care of here

shortly, but I can't believe we wasted that time with the other PT

when is right here and we were never told.

If you are coming back to Cleveland for PT or decide to band, we

should take out for some drinks. She deserves it after

dealing with all these turkey doctors. I bet would join us

too. Our husbands can get together and babysit!

I hope the specialists calls you back. I don't understand how

someone feels he is so important that he can't even return a phone

call!

> Hi Kellie and Happy Birthday!!

>

> I know exactly how you feel about . I'm not sure if you read

my posts about or not but we are in a similar

situation. We think his head looks really good, after all he was in

his STARband for 7 mos. -- it should. We too looked at pics of him

before he started his STAR treatment and we cannot believe how his

head looked before he was banded. He does still have a slight

flattened area behind his right ear, but no one notices it. I

probably think it is worse than what it really is, because I stare

at it so much. But after our consult with KKR ( Karmel-Ross)

in Cleveland and her cranial measurements I'm beginning to think his

head is worse than I thought.

> For starters - we got rid of his old PT (for his tort) and a new

one (also through EI) is starting next Wednesday. He is tort

experienced, but then again so was 's first PT. I spoke

to this new PT on the phone and he seems very eager to get started

with . He is willing to watch the video tape of our

session with KKR and also to read her book. His PT frequency is

getting moved up to once a week, maybe even more than that.

has been in PT for 9 mos. now, and we feel like we are

just starting out when it comes to doing the stretches. Stretching

him is a nightmare!!!! He turned 15 mos. old today and is totally

mobile! I'm sure you know that at that age they do not want to be

held down for even a minute. All we have to do is touch his head,

neck, shoulder etc. and he totally freaks out!! It is next to

impossible to get good stretches in - when we do get in some good

stretches, he just screams. We try to sneak them as much as we

can. He even hates massage. I try and do facial massage on him

when he goes to sleep - he won't even let me do that!! He pushes my

hands away and rolls over!! It makes me sick to think that by now

he should be close to being resolved and even if he wasn't he would

be a little bit used to some of the stretches. He wants nothing to

do with it.

> As for his head shape - I spoke to his orthotist for his STARband

and to KKR. His orthotist told me that I should get a second

opinion about his cranial measurements and gave me a couple of dr's

names. I called a cranial facial specialist on Tuesday. His office

told me he would call me back. He did not. I've called his office

every day this week and they keep telling me the message is on his

desk and he will call me. We do not have much time here - after all

he is 15 mos. what if we decide to band him again? KKR said we have

a little more time left to band, but not much. My husband is mostly

against banding again (I really do not want to either - he wore one

for 7 mos. and got excellent correction - he did his time!) he says

he feels he got excellent correction with the STAR, he does not need

another. KKR explained to us (on the phone last week) that the

second band is not for cosmetic reasons, but for his cranial base

measurements. has never had a CAT Scan or MRI or X-rays

or anything done. We were hoping to get something done so we could

actually " see " what is going on " inside " . The " outside " to us looks

great. Though we are worried about his jaw/facial asymmetry, but

are hoping the new PT can help us work out most of the tightness.

These past 2 wks. have been hell for me!!

> I feel as you do -- is up and about and also reaching

all of his milestones. His old PT did a " Dismissal Evaluation " on

him on Weds. and she had written down that he has reached all of his

developmental milestones and he is " age appropriate "

developmentally. He is such a happy little guy - how can there be

anything wrong with him?!?!

> Well, if this cranial facial doc. does not call me by tomorrow I

am calling another. We want some piece of mind over this - we

haven't slept good since all of this came about.

> Hang in there -- I know how you feel.

>

> AnnMarie & (15 mos.)

>

> PS -- I know how you feel about the birthday bit too -- my

birthday was this past Monday the 22nd!! Woo Wee!!!!!