Re: please let me vent.....

[Guest guest]

Jeanne,

I tell you what a pain. It seems that you really have to live it to

relate. And the Dr's oh my gosh they seem to be on another planet. I would be

curious to see how one of them would handle having a CHARGE'r. We are headed

to U of M July 12 to have a surgery with the urologist for testicles again.

Mark is still having the urinary accidents it has been over a year now. AND

NO ONE CAN TELL US WHY. He is also having both big toe nails removd at the

same time. For ingrown toenails. His behaviors have left more to be desired

lately and made a couple weekends with company a real challenge for me not to

mention how depressing it is. I tell ya at 17 I can't say we have outgrown

our difficulties at all!

V

[Guest guest]

Jeanne,

I'm speechless, literally...my mouth is agape at the moment...I can't imagine

going through all that in ONE week...my gawd girl... If you aren't a candidate

for " Calgon take me away " I don't know WHO is!!!!!

I don't know how, but I sure hope you can find some " YOU " time somewhere and

just fade into yourself for awhile. (I run or work out at 5:30 in the morning

for sanity)

HUGS,

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme

New Brunswick, Canada

Visit the Weir Homepage: http://www.geocities.com/kawfolks

please let me vent.....

What have we been up to this week? Let's see.

Monday A.M.: Opthalmologist recommends another eye

surgery but says after 4 unsuccessful surgeries that

her odds of success are poor and will understand if we

say no. (which we do--so after 4 surgeries, my kid

still only uses 1 eye).

Monday P.M.: Our regular cardiologist is on vacation.

The one filling in for him that day wants to reinvent

the wheel. Seeing in her chart that 3 cardiologists

(our regular one, a second one at that office, and the

second opinion we sought out at UMI--the renowned

surgeon Dr. Bove) all said that a cardiac repair was

not possible and will probably diminish her quality of

life and possibly be fatal.

SHE says, I realize that, but for her to have

longevity, we simply must think of repairing her now.

She's bringing it up at conference to do so,

regardless of the risks.

Hey, we've been told to forget about longevity and to

enjoy her NOW! Now she's urging us to take a big risk

now which MIGHT pay off for her future! (I know, I

know--JUST SAY NO)

Tuesday A.M Psych talks about adding Prozac type

drugs to her already daily dose of 10 meds (for

asthma, behaviors, GI problems, and heart)

Tues P.M. ped diagnoses her with allergies and puts

her on Claritin--med #11!

Thurs P.M Pulmonary changes all her meds because he

confirms my suspicions that she's still aspirating and

can feel that she is not exhaling fully anymore

(again). Won't increase GI meds because they're maxed

out.

Fri A.M.: New Neurologist stands us up. Her

secretary forgets to call us to cancel. I catch the

neurologist on my way out who I've never met before,

but recognized. I chew her out ranting and raving for

15 minutes--I was shaking I was so livid after getting

my kid up at 5:30 in the (terrible expletive here)

morning and listening to her tantrum about it for an

hour. To top it all off, she woke up that morning

with PINK EYE! Then dragging her to the hospital

(hoping to get an antibiotic eyedrop to save another

trip back to the ped) only to be stood up. At the

same office that ALWAYS makes patients wait at least 3

hours for a 15 minute visit with the dr which last

time was spent entirely lecturing his accompanying

students on the CHARGE facial features before them (in

my daughter). (I love it when they point out her

colobomas--SHE DOESN'T HAVE ANY MORON!!) Anyway, I

can't BELIEVE they didn't call security!

Fri P.M. Ped's office never calls me back regarding

pink eye in spite of my 3 urgent phone calls. I leave

for GI appt and keep her on my lap the whole 2 hrs in

the waiting room to keep her from touching anything.

GI doc increases her GI meds--even adding med #12 and

increasing the dosages that she's on.

Sat: Ped finally calls me back and calls in an Rx for

antibiotic eyedrops. I call to cancel birthday party

we were supposed to go to (the last one she was

invited to last month we cancelled because she was

hospitalized).

Tomorrow (Sun): She'll be getting her IV infusion so

can't make that birthday party either. (I know, I

should be grateful that she's been invited to so many

parties this year).

Next week isn't due to be much better. I am praying

my husband doesn't get his license pulled at his eye

appt!

Please, lots of cyber support my way now!

Jeanne mom to Caitlyn age (almost) 6yrs CHARGEr

__________________________________________________

[Guest guest]

Jeanne,

Another thought here...you should save this email where you typed out everything

that happened this week. I know it would be a lot of work on your part, but

you should go give a speech somewhere to some graduating class of med students

about what it's like to be a parent of a child with multiple needs. There's a

woman I know who goes and speaks quite often to the graduating speech

pathologists about having a child with Ushers Syndrome and it's pretty amazing

to hear her speak. I think you'd be an excellent " tell it like it is " parent to

let these students in on a big dose of reality. Ever thought about anything

like that???

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme

New Brunswick, Canada

Visit the Weir Homepage: http://www.geocities.com/kawfolks

[Guest guest]

Jeanne,

I wish there was something I could say...Where do you

get your strength? You are AMAZING!

As far as the doctor that you yelled at... GOOD FOR

YOU! There are lots of drs. that I would like to do

that too:)

I Hope things go better for you this week! You need a

vacation!

Kristal

Caitlin's mom (3yr old CHARGE)

__________________________________________________

[Guest guest]

Jeanne -

From the keyboard of J McMullen:

> What have we been up to this week? Let's see.

....

What an amazingly hellacious week!! I am stunned

that you and the other CHARGE moms can do all this

and remain sane. Consider yourself in my prayers.

>...

> Tues P.M. ped diagnoses her with allergies and puts

> her on Claritin--med #11!

Having had inhalent allergies for many, many years

may I suggest another option to try (assuming that

Caitlyn's allergies are to inhalents): A HEPA air

filter in her bedroom. When my son's pedi prescribed

an antihistamine, I tried that first and, while he still

has some allergic symptoms, the worst of them are

greatly diminished by running the HEPA air filter

in his bedroom at night while he sleeps.

I know it would be one more *thing* to deal with,

but perhaps it would help the allergies enough to

avoid another med (and the filters are generally

pretty available at places like Target, etc).

>...

> Next week isn't due to be much better. I am praying

> my husband doesn't get his license pulled at his eye

> appt!

Good luck to him!! My heart goes out to your family

for having way too much to deal with.

> Please, lots of cyber support my way now!

Best wishes to you and your entire family.

Hugs,

Debbie

--

+== Debbie Tropiano == Mommy to 8/17/95 & ^Sara^ 10/25/00-11/7/00 ==+

| God shows His opposition to cancer and birth defects, not by |

| eliminating them or making them happen only to bad people (He |

| can't do that), but by summoning forth friends and neighbors to |

| ease the burden and to fill the emptiness. -- Harold S. Kushner |

+== debbie@... ============= URL http://www.icus.com/personal.html ==+

[Guest guest]

Jeanne,

HUGE HUGS Darlin !!!!!!

VVent away anytime...

Love,

Casey, mom to Dawn 22 HH, Ken 11 ADHD, and 9 CHARGE

AIM ZeeCasey, ICQ# 728514

http://www.geocities.com/Heartland/1220

[Guest guest]

on 6/24/01 6:38 AM, KAV427@... at KAV427@... wrote:

> Jeanne,

> I tell you what a pain. It seems that you really have to live it to

> relate. And the Dr's oh my gosh they seem to be on another planet. I would be

> curious to see how one of them would handle having a CHARGE'r. We are headed

> to U of M July 12 to have a surgery with the urologist for testicles again.

> Mark is still having the urinary accidents it has been over a year now. AND

> NO ONE CAN TELL US WHY. He is also having both big toe nails removd at the

> same time. For ingrown toenails. His behaviors have left more to be desired

> lately and made a couple weekends with company a real challenge for me not to

> mention how depressing it is. I tell ya at 17 I can't say we have outgrown

> our difficulties at all!

>

> V

>

>

>