re: Aman Mehta

[Guest guest]

Pushpa-

I know this is a very scary time for your family. My daughter, Aubrie, is now 4

years old. I can still recall the shock when she was born and the difficult

feelings we went through in those first years. As you list all of Aman's

symptoms, it seems huge to you, but actually he sounds like he's doing well.

Aubrie also had some trouble breathing right after birth. That only lasted for

a few days. At 8 days old, she had surgery to correct a defect of her aorta.

Feeding problems were our biggest obstacle and by a few months of age she had a

Gtube. It was a blessing in allowing us to get nourishment into her while she

developed her feeding skills. Her Gtube was removed after her first birthday

and she is now a totally oral eater eating a " normal " diet.

Aubrie also has severely limited vision in one eye and near normal vision in the

other. At the beginning, we didn't know if she could see or hear us. She was

several months old before she first smiled at me or responded when I entered the

room. Now she functions almost as a normally sighted person. Her visual

impairment interferes with distance vision more than anything.

Aubrie has hearing impairment. We are fortunate because she seems to hear quite

well with her hearing aids. She got them this summer. We haven't been able to

do a hearing test with the aids yet due to one or another complication. We hope

to get that information soon.

At Aman's age, our family was grieving and overwhelmed. We didn't know what to

expect for our future or from Aubrie. The group on the list told us that life

would regain a sense of " normalcy " and everything would be " ok " . I didn't

believe them. I was sure they were just saying that to make me feel better.

But they were right! The first year or so is very difficult. Some things are

still difficult, but we have learned to cope with our new life, Aubrie is a

delight, and all is well.

Aubrie seems to have normal or above-normal intelligence. Communication has

been the key to unlocking that. Without early sign language, I would never have

known how her mind was developing and she would have been a very frustrated

little girl. We still use some sign, but she is becoming more and more verbal

all the time. We aren't exactly sure which factors are interfering with her

speech development so I don't know how clearly she will learn to speak.

My first advice to you would be to find resources to help in the area of

communication as soon as you can. It is critical. The old CHARGE literature

says that most of the children are mentally retarded. Current research says

that that is not true. Do everything you can to help Aman learn about his world

and communicate with you. Once he can communicate, you will be able to get some

idea of his intellectual abilities.

Physically, most of the children need the services of both physical therapists

and occupational therapists as well as speech and/or feeding therapists. These

are things that we started as a newborn in the hospital. I know things are

managed differently in Canada, but there are many Canadians on the list who can

help you find services for Aman.

Although children with CHARGE typically walk later than average kids, they do

walk. Aubrie walks, runs, and plays with her classmates and her brother. In

the beginning, I imagined her crawling into kindergarten. She has far exceeded

my expectations.

I'm glad you have found us. Welcome to our CHARGE family! We look forward to

learning more about Aman and answering more questions.

Michele W

mom to Aubrie (4 yrs) CHaRgE and (10 yrs)

note: we capitalize the letters in charge to indicate the areas in which our

child is affected

[Guest guest]

, cannot express the solace a letter from you has offered us, Ive

forwarded it to my children, may God continue to Bless them with more and

more strength, this is what Amrit mentioned in his letter today<Aman is fine

and we bathed him, which he obviously enjoyed. I took him in my arms, and he

was staring at me with his big eyes. I talked to him for about 15 minutes.

once he comes home, he will be cured with my pep talk 24 hours a day.

somehow, I am very positive with him, and God gives you strength through

unexpected quarters. I am amazed that I had so much optimism hidden in me.

through him, I am finding out more about myself.> Its good to read about the

progress Aubrie is making, God Bless her. Right now we cannot fathom what is

in store for Aman, its a wait and watch situation, we have to learn to hope

for the best but be prepared for the worst. But it is

great feeling to know that we can always depend on this wonderful support

group for advice and guidance, we believe that we must always accept Gods

will, we cannot change our destiny but we can control our attitude towards

it. Our children have just migrated to Canada this year and are on their

own, and they need all the support they can.We are looking forward to more

information and guidance from all of you so keep it coming, Thanks again

Pushpa

[Guest guest]

Pushpa-

Aman's parents sound like they are going to do just fine in handling the new

challenges before them. Positive attitude makes a huge difference. Having the

energy to search out the resources is another key factor. There are many

support systems out there for them. Their challenge will be to find and utilize

them fully.

Aubrie's first year or so was spent with so many people interfering in our

lives. We had a home health nurse that came fairly often. I can't remember the

schedule now. Other nurses came to stay with the kids so I could nap, grocery

shop, whatever. Therapists were in and out -- or we were driving several hours

to see them -- every day it seemed.

I remember one day when I was so tired from lack of sleep that I knew I could

not function any longer. I called every friend in town. All of them were busy.

Through the phone chain, I got in touch with a retired woman in town whom I'd

never met before. She came and sat with my sick baby (feeding tube down her

nose, vomiting constantly, etc) while I slept. Bless her heart -- I would never

have made it through that day without her.

I very quickly learned to ask for and accept help. Our pastor gave me great

relief when he explained that by asking for help I was allowing others around me

to do what made them feel worthy and good. So I was giving my friends a gift by

letting them help and support me. That way of thinking made a big difference

for me. We are also in a town without our family so we rely on friends and

acquaintances much more than the " natives " here.

Amrit sounds just wonderful. I did the same with Aubrie. I sang to her holding

her up close so she could feel my breath even if she couldn't hear my words.

She had many sensory issues and would vomit so much. I remember a nurse who

suggested we didn't hold her because she kept her food down better in her seat.

Well, we did keep her in her seat more often than we would naturally do, but we

also held her a lot. And I let my hair fall in her face and snuggled her

against whatever textured clothing I was wearing. I think all of that helped

her to overcome her aversion to tactile input.

Well, I won't go on and on. I'm glad your family is coping through these very

difficult times. Having you as a support has to be making the road easier for

them. I know that my mom's support has been essential for me. Let us know how

we can help from the list.

Michele W

Aubrie's mom (4 yrs) CHaRgE