RE: Thanks for the welcome

[Guest guest]

Hi Angie,

We also live in Ontario, in Keswick, just North of Newmarket. Welcome!

I just retrieved my email and saw your addition to the list. We were away

for a week and I am again catching up on my email. Our daughter , age

8, has CHARGE as well. She just had her choanal atresia repaired,

transpalatal, two weeks ago and we decided to spend a week at a ski resort

close by (incase of any problems) so our other son and his friend could ski

and have some fun during March break. enjoyed the pool and the

humidity from the natural salt water pool was great to break up the mucus

that resulted after surgery (have to think positive, ha!).

We welcome Nicolas and your family to the list. I imagine you have all of

you doctors at Sick Kids. Maybe we have several of the same? Hope to hear

from you again soon.

Pat, , (121/2) (8 1/2)

Rittgasser

Keswick, Ontario, Canada

Re: Thanks for the welcome

From: bearpawzx4@...

Members

(Kay Lea) and all the others

Thanks for the welcome.

I live in Bowmanville, Ontario. It is east of Toronto.

I have 4 wonderful children (ages 6, 5, 3, and a 2yr old charger).

is 2 years old. His dx is as follows:

* bilateral ptosis (blepharophimosis) and blocked tear ducts- surgically

repaired twice

* brain stem abnormailities - resulting in ? still investigating

*unilateral chonal atresia - to be repaired at 4

*severe reflux and aspiration - GJ tube fed (21 hours daily) - resulting in

multiple pneumonias (has had pneumonia 20 times)

* 2 G tube insertions and 5 GJ tube insertions

*horseshoe kidney

*very tiny stomach - can hold up to 25ml of fluid only

* coarctation of the aorta - surgery repaired at 30 HOURS and cath for

restenosis at 1 month

* PDA, Parachute MV, bicuspid Aortic valve

* carotid coarctation

* left subclavian coarctation

* left vocal cord paralysis ( post initital heart surgery)

* totally deaf ( 2 ear procedures - including tubes)

* legally blind ( did not open eyes for first 6 weeks of life)

* chronic lung disease (chronic asthma) - treatments with neb on compressor

every 4 hours ( permanent lung scarring)

* 19 pounds at 26 months

* mild hypospadius

* OXYGEN dependant 24 hours a day ( immature response to Hypoxemia)

* thermo irregulatory function

has had in total 13 surgical and/ or invasive procedures to date.

We know he will require more.

He can hold his head up by himself, he can roll and roll and roll, he tries

to pull himslf to a seated position, he can sit up with much assistance, he

shows promising cognitive function. has established object

permanence with favourite toys. He can recognize and manipulate objects very

well into his vision field. Despite his loss of hearing, vocalizes

well and is learning to communicate. He can sign MOM, DAD and the MORE sign.

I am so proud of him.

The most important diagnosis that i forgot was that:

HE IS SO CUTE, with a wonderful disposition and great sense of humour.

Hope to hear of everyone else's little angels soon.

thanks again

Angie, mom to 6 yrs, 5 yrs, 3 yrs, and 2 yrs

(charger) and wife to

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For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org