I'm back

[Guest guest]

Alison:

My goodness, my heart really goes out to you right now. You most

definitely have your hands full with a number of difficult

challenges. I am sorry to hear that the band is going so bad for

Tyler. I really wished that the band would work for Tyler instead of

needing surgery. If the red welts aren't going away, then I suggest

definitely keeping the band off his head.

Do you have any family that would possibly take your older son, Rion

for at least a few hours a week? I bet it's hard on him seeing Tyler

go thru so much.

You are doing so much to help Tyler - I applaude you for being such a

great mommy. I would be going crazy if I was in your shoes.

Especially the not knowing part. That has to be sooooo frustrating

to you.

Please keep us all updated on Tyler's conditions. I really pray

things start to go better for him, poor little fellow :'(.

Hang in there.

Hugs!!!!!!!!

Debbie Abby's mom DOCgrad 6/22/01

MI

[Guest guest]

OMGoodness Alison, you are certainly a very busy mommy! I am so

sorry to hear that the band isn't working out too well right now. I

know it must be frustrating to have the band and not be able to use

it, but you're doing the right thing keeping it off until they can

get it to fit right. And I truly hope that they can get it to fit

right and that it will do the trick. Please let us know how your

appointment goes, we'll be thinking of you.

I can't remember where you are located, but if you are anywhere near

Philadelphia, if there is anything I could ever help with, please let

me know! I have a three yr old too, so I know how difficult it can

be to try to explain to them whats going on.

Hang in there and take care!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi everyone,

>

> The last time i posted was around 10/7 or so, right

after

> my son Tyler had his casting. My computer had crashed and i had

> problems with my modem, and after all the unsuccesful attempts of

my

> friends i had to pack her up and ship her out to get fixed.

>

> I have been pulling my hair out going crazy that i have

> not been able to keep in touch because i have had so much going on

in

> one month to last a lifetime. Not to mention it took me 3 opinions

to

> decide to try the helmet.

>

> For those of you that never talked w/me i had a struggle

> making a decision on which way to go because my son also has

metopic

> craniosynostosis.

>

> Tyler ended up being banded on 10/19/01. It has been 3

weeks

> and we are having a horrible time with it. Besides my scheduled

> adjustment last week we have been back 3 times. The ridging down

his

> forehead is not taking to the device to well. It is constantly red

> and getting bubbled up. He looks like he has welts on his forehead

> and on the left side of his face where it is swollen from the

plagio.

> When we go back the clinician shaves down more and more of it and i

> totally trust him. i know he knows what he's doing.

>

> We went to our ped on monday for his 8 month old checkup.

His

> head did not grow at all in 2 mos. The ped said he thinks Tyler's

> eyes are looking a little more set back than they did 2 months ago.

>

> We also went to the genetic dr. on tuesday for our followup

> from lastmonth when he took blood for the chromosomal testing. He

> said that at this time there was no deformity detected and he had

all

> 46 chromosomes. He said he is not ruling anythinhg out though

because

> having everything Tyler has is alarm for a syndrome.

>

> I also got the report back from the ped optomologist who said

> he saw no evidence of papilldema(sp) or swelling of the optic nerve

> to indicate intra-cranial pressure. However he has astigmitism in

> both eyes and is nearsighted. He recommends glasses down the road

and

> to not rule out pressure on the brain soley based on him. He wants

us

> to seek other advice on that situation because he said vision is

not

> the only indication of this.

>

> I went back to my 1st opinion neuro-surgeon(the one who

> suggested surgery right away) and brought copies of my 2nd and 3rd

> opinions to see what he had to say. He said that he values and

> respects both dr.'s and thier opinions because they are some of the

> best and are more experienced. But he did'nt seem to think the

helmet

> will work or that we even have a positional problem. He does,nt

know

> yet that i decided to try the helmet, but i am seeing him again

next

> week.

>

> I go back to the 3rd opinion on this coming monday for his 3

week

> checkup of the orthotic therapy. The clinician and the neuro-

surgeon

> both told me if i see any major marks that don't go away in 1-2

hours

> to leave it off and come in for an adjustment. Yesterday he woke up

> with welts on the forehead again and it's like 36 hours later and

> it's still there. So he really did not wear it at all this weekend.

I

> see the clinician immed. after the neuro-surg on monday. They are

in

> the same building.

>

> In the meantime, our ped and the 3rd opinion neuro had

suggested

> early intervention to help evaluate tyler's extent of delay. In the

> last month i have had dozens of therapists coming in to my home to

> evaluate him and work withhim. I really don't mind, but i have not

1

> sec. to myself. My 3 year old is going bananna's because he can't

> emotionally grip whats going on with his brother. Thet have come to

> the conclusion that tyler is globally delayed in all aspects. He is

8

> months old and they say he is on the estimated level of a 3 month

old.

>

> The big concern is why??? Does he have pressure on his brain

or

> is it that he was born 3 weeks early or is it his past medical

> history of having a leftsided pyleoplasty at 5 months old??(kidney

> surgery) The therapist seem to believe it is more than the surgery

> because it is not only his left side that is weak. they said his

> spine is the weakest part on him. He is 8 1/2 months old and he

does

> not even sit up or babble and is constantly crying.

>

> So we are having PT 3x's a week, OT x's a week and ST 3x's a

> week all in my home. I can't leave my house even if i wanted too. I

> am trying to find somewhere for my other son to go a couple of days

a

> week so he does not have to deal with this so much. With only my

> husband working, i cant afford a daycare. There is no way i can

work

> now or anytime soon. Not to mention i have 23 Dr.'s appts in the

> month of november alone. Thats including the kidney stuff anfd the

> adjustments too.

>

> I am so sorry for anyone that got real tired reading this

because

> i know your eyes are sore. I wish i had'nt missed a whole month of

> contact and i pray that does not happen again.

>

>

> Thank you everyone for listening.

> Alison

> mommy to Rion 11/5/98

> mommy to *Tyler 2/21/01

> *cranio/plagio/micro

[Guest guest]

Alison,

I read your post and just couldn't help but think what a great mom you are.

You clearly give 110% to your children and you are to be commended. I am so,

so sorry to hear about all the trouble with the plagio/cranio you are having.

I think you are doing right to go back and continue to gather information and

advice from the specialists you have seen. Ultimately your instinct will tell

you what you should do next. The therapists that you have coming into your

home will surely make a big difference in Tyler's growth and development.

Tyler is very lucky that he has a mommy who will go the distance for him. I

hope you will keep us posted and please know that a flood of well wishes and

good thoughts are coming your way from the people in this group.

Marci (Mom to )

Oklahoma

[Guest guest]

Alison,

Wow, you do have a full plate! Your a great mom for doing all that you are, your son will thank you over and over when he's old enough! Maybe your 3 year old could stay with Grandma or an Aunt or a Friend or neighbor for a few hours....even a trip to Mcs and the play area might do the trick! Good luck to you and your family and hang in there...the road may seem long but your journey will end one day and it will all have been worth the hard work! Praying that all turns out your way!

' Mom

[Guest guest]

At 10:40 PM 7/3/05 +0000, you wrote:

>A few days ago I went for my monthly with the ONC. He had some bad

>news. Last month we ran the FISH and PCR test. The resuls came in

>while I was in the hospital. I didn't get the FISH results yet but

>the PCR came back positive. He said that a number wasn't sent and he

>is contacting the company for the actual numbers. He also told me

>that as soon as all of this other stuff is cleared up he is bumping

>me up to 600mg of Gleevic. He is also once again pushing for a

>transplant. I hate to hear that!

>

>Smile,

> Herring

>

>----------

Hi ,

Sorry to hear about your 'other' medical problems but glad you are

recovering now.

Were you neg on PCR before? almost everyone is + on that test, so saying

that alone, does

not give you much information. So, it does not sound like you have much

info yet to be discouraged about?

If your disease status does start to change, you might want to consult a

CML specialist if you can

with your insurance. Most of them are NOT pushing people toward transplants

these days....unless you are young, related donor, etc.......because of the

new drugs in trials right now. So, having a BMT should be your

decision.....not a doctor pushing you toward one.

Let us know when you get more test results.

Have a good 4th! we are celebrating our country and your service!

C.

[Guest guest]

Hi guys,

Well I got my phone turned back on...one bill down. I now have to

figure out how to keep my electric on...ugh. I interview for this

new job on Friday...and if I don't get it...I will simply start

pursuing other employment in the district because I will definitely

know my place there at the school. I just know that I cannot handle

living this way.

Sorry I am just a little bit down about all of this frustration. I

had thought I was past all of this money struggles...and had moved on

to bigger and better things...but I guess I just will have to keep my

prayers going and know that I have put it in God's hands and He will

not let me down.

I just wanted to let you all know that I am back online again...for

the moment...at least while I have power...lol.

Caroline

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[Guest guest]

Caroline

Good to see you back. I can sympathize with what you are going

through. But it DOES get better. Just hang in there and remember that

we are all here sending you positive energy and support.

" Many of us do not realize that pain and joy run together. When we

cut ourselves off from pain, we unwittingnly cut ourselves off from

joy as well. "

>

> Hi guys,

>

> Well I got my phone turned back on...one bill down. I now have to

> figure out how to keep my electric on...ugh. I interview for this

> new job on Friday...and if I don't get it...I will simply start

> pursuing other employment in the district because I will definitely

> know my place there at the school. I just know that I cannot

handle

> living this way.

>

> Sorry I am just a little bit down about all of this frustration. I

> had thought I was past all of this money struggles...and had moved

on

> to bigger and better things...but I guess I just will have to keep

my

> prayers going and know that I have put it in God's hands and He

will

> not let me down.

>

> I just wanted to let you all know that I am back online again...for

> the moment...at least while I have power...lol.

>

> Caroline