Re: charge diagnosis (Rose)

[Guest guest]

Rose,

I share your frustration with doctors- I have changed many parts of Sara's team-

including her pediatrician recently. However I live in Atlanta- so I'm not much

help to you. Sara wears a helmet to correct her head flattening- but it doesnt

help torticollis.

[Guest guest]

,

Thanks for that, I am the father of Whitney, 14 months, who can't walk,

can't eat normally, 11 pounds, very tiny still, and have been feeling lately a

little down thinking about my daughter and what her future holds. I sometimes

get down thinking that we have a life of heartache and won't see her have a

normal life. While that is a possibility, I realize that she will have some

form

of life, it may not be the one I envisioned for my only girl, but a life non

the less. And with her happy personality I'm sure she will be a joy. But

hearing that email gave me hope, thanks again.

[Guest guest]

She has been in therapy for tort about 4 months now- progress has been slow.

They didnt speculate on how long she will wear it. She needed it months ago-

but our old pediatrician just kept saying I wasnt putting her on her belly

enough, and that repositioning would be enough. Like I said we found a new ped

just last month. I did not like our geneticist at first- but appreciate how

thorough she was. It seems like even a positive diagnosis still gives you no

indication of what the future will hold... no predictors. But then I guess that

leaves room for us to hope huh?

[Guest guest]

wrote:

> It seems like even a positive diagnosis still gives you no

> indication of what the future will hold... no predictors. But then I

> guess that leaves room for us to hope huh?

-

This was a huge frustration for me when Aubrie was little. Huge. The

thing that made the difference for me was meeting adult CHARGErs who are

similar to her. We " met " from OH thru the list and her mom

although has not been to a conference herself. When I saw photos

of at prom, graduation, and dance -- it gave me such great hope!!

And, most of all, a real vision of what Aubrie's future could hold.

Then I met Patty (Bonnie's daugher in NY). She and Aubrie are so

similar that they are like twins 13 years removed. Patty has been such

a gift to me in that I can truly see what Aubrie may be like as an adult

-- and I can see that it's a wonderful future. I would be delighted and

proud to have Patty for my child. I'm fortunate that Aubrie is doing

well and the adults most like her are doing well also. But even if you

find that the older children most like your child are doing less, it's

still a more tangible view of a future. Not having anything to go on is

so frustrating! The other positive is that you can hope for more

because each generation of children gets earlier intervention and better

therapies -- in part due to the info shared here on the list.

Going to a conference and meeting other families with CHARGE can be such

a wonderful, powerful experience. Not only do you see possibilities for

your child, but you see other parents and siblings of kids with CHARGE

and see that they are still doing ok. I sobbed when I returned to my

hotel room after my first experience meeting a room full of CHARGE

families at my first conference welcome reception. I hadn't realized

how inadequate and guilty I was feeling. And how fearful that my family

would never be " ok " again. But here was this room of fabulous families

-- smart, attractive, funny, happy, successful -- with kids of all ages

and sizes -- siblings and CHARGErs -- and I felt that it was " ok " to

belong to this group. It's not a " club " I would have joined by choice,

but once you're in, you realize how awesome it is.

Michele W

Aubrie's mom 6 yrs and 12 yrs wife to DJ

[Guest guest]

I can't remember all of Whitney's issues, but Aubrie also at 14 months

" can't walk,

can't eat normally, 11 pounds, very tiny still " could've described her.

I remember when Aubrie was little -- when I pictured her in

kindergarten, these were my greatest hopes -- that she'd get herself

around the classroom somehow (crawl, scoot, anything) -- that she'd at

least pretend to eat normally for schooltime meals even if she had tube

feedings at home -- that she'd have some way to express her most basic

needs (sign, gestures, whatever). Instead, by kindergarten, she was

eating well, running, taking dance class, singing, talking, etc.

Granted, everything is a bit different than the way her peers do it, but

she is doing it. Now, entering 1st grade, she could read 70-80% of the

1st grade sight word list. She's a whiz in many ways. And so funny.

Her speech is difficult for outsiders to understand, but she can tell me

her deepest thoughts and I can understand. I didn't know how she'd ever

do that.

> I realize that she will have some form

> of life, it may not be the one I envisioned for my only girl

It is true that you will change your vision for her. I have even

changed my vision for my older son. Things that I thought were

important are not anymore. I mean, I want him to be successful and

achieve his potential. I hate to see him being unmotivated when he's

got so many skills and abilities waiting to be explored. But I really,

truly don't care what it is that he chooses for his life --as long as

he's happy and successful in all the ways that matter (relationships,

family, integrity). I've let go of a lot of preconceived notions for

both of my kids.

Another thing that frustrated me early on was that my own flesh and

blood child was part of a different cultural group (disability) than I

and that I was having to learn a foreign language (ASL) to communicate

to her. Then, to top it off, she looked and acted more like her CHARGE

" peers " than her own brother! But I reconciled that for myself by

thinking of it this way: She has 3 parents. She has genetic material

from me, from my spouse, and whatever genetic material causes CHARGE.

So those other CHARGErs really are siblings in that they share some

genetic material. And our CHARGE family really is family after all.

And I am a part of the disabled culture just by virtue of being her

mom. And I am enjoying learning about the CHARGE part of her. She is

fascinating. I am learning more about how the human body and brain work

than I ever did as an educator or parent.

Michele W

Aubrie's mom 6 yrs

[Guest guest]

As I speak my daughter is going back in the hospital, just when you think she

is doing well and her heart surgery and recovery are behind us. We don't

know what is wrong with her tonight but we woke up and she is not breathing

normal and has a high fever. Color is very bad. I am scared to death. My

wife

is bringing her to the ER right now. I am here with the boys, man , this

is a rollercoaster of a ride that I wasn't prepared for. Please pray for her.

Whitney's dad

[Guest guest]

Please keep us posted, positive thoughts coming your way from our family.

Stay strong,

Weir

Mom to Kennedy

wellsjdan@... wrote:

As I speak my daughter is going back in the hospital, just when you think she

is doing well and her heart surgery and recovery are behind us. We don't

know what is wrong with her tonight but we woke up and she is not breathing

normal and has a high fever. Color is very bad. I am scared to death. My wife

is bringing her to the ER right now. I am here with the boys, man , this

is a rollercoaster of a ride that I wasn't prepared for. Please pray for her.

Whitney's dad

[Guest guest]

I certainly remember back to those days of wondering what Kennedy's life would

be like, whether there would be any type of quality to it, etc. It's the

hardest time for sure. This week, she had her 17th surgery and came home again

that night to go to her Sparks group enrollment night (like girl scouts, I don't

know if it's in the US), get her first page and pin and then the next night went

to her tap & jazz dance class. Just to let you know we were where you are and

things still sometimes are not perfect, but they can change.

Weir

Mom To Kennedy, RYan &

wellsjdan@... wrote:

,

Thanks for that, I am the father of Whitney, 14 months, who can't walk,

can't eat normally, 11 pounds, very tiny still, and have been feeling lately a

little down thinking about my daughter and what her future holds. I sometimes

get down thinking that we have a life of heartache and won't see her have a

normal life. While that is a possibility, I realize that she will have some form

of life, it may not be the one I envisioned for my only girl, but a life non

the less. And with her happy personality I'm sure she will be a joy. But

hearing that email gave me hope, thanks again.

[Guest guest]

Know we will probably all be thinking of you and all of your family this

morning.

Keep us posted.

pam

[Guest guest]

Whitney's dad-

My prayers and thoughts are with you and Rose. I hope that your next

post is one of hope after getting your baby stable. Sending loads of

healing energy her direction--

Michele W

Aubrie's mom

[Guest guest]

It's so tough, just when you think you can relax a little, something else

hitting you where it hurts the most. I wish Whitney good recovery. and you

and the family lots of strength in dealing with this crisis. Please do keep

us all posted on her progress.

Flo

[Guest guest]

Whitney's Dad,

Whitney and your family will be in our thoughts and prayers, hoping

for a speedy recovery.

Sheryl

Mom to Mitch 18 & 18 CHARGE

> As I speak my daughter is going back in the hospital, just when you

think she

> is doing well and her heart surgery and recovery are behind us.

We don't

> know what is wrong with her tonight but we woke up and she is not

breathing

> normal and has a high fever. Color is very bad. I am scared to

death. My wife

> is bringing her to the ER right now. I am here with the boys,

man , this

> is a rollercoaster of a ride that I wasn't prepared for. Please

pray for her.

>

> Whitney's dad

>

>

>

[Guest guest]

I hope Whitney is better now.

Kay

Re: charge diagnosis (Rose)

>

> As I speak my daughter is going back in the hospital, just when you think

> she

> is doing well and her heart surgery and recovery are behind us. We don't

> know what is wrong with her tonight but we woke up and she is not

> breathing

> normal and has a high fever. Color is very bad. I am scared to death.

> My wife

> is bringing her to the ER right now. I am here with the boys, man ,

> this

> is a rollercoaster of a ride that I wasn't prepared for. Please pray for

> her.

>

> Whitney's dad

>

>

>

[Guest guest]

Michele -

What you wrote was beautiful... just beautiful.

I always enjoy reading your perspective :-)

Kristi

mommy to Gracie, 18 months

[Guest guest]

I am praying for Whitney, and all of you. Please let us know how she is

doing when you can.

Bonnie

[Guest guest]

Please do not send me any more e-mails, I am being bombarded!