update on Aman

[Guest guest]

Pushpa,

I am not on the list as often lately due to other

demands, but I caught your email and it reminded me of

the angst I felt during the early years.

My daughter has been diagnosed with tracheomalacia and

bronchomalacia. How long her tracheomalacia healed

probably had a lot to do with her repeated

intubations. She's 6 yrs old and though she has a

trace of a stridor, she hasn't had severe croupy

episodes for about 2 years now.

My daughter walked at 22 months, probably considered

early for a CHARGEr. It took awhile due to critical

illnesses, multiple surgeries and medical procedures,

low tone and poor balance. At 6 years old she has

mastered scribbling and is struggling with learning

her letters while mainstreamed in kindergarten. She

has a much easier time with prereading and premath

skills. She requires a one-on-one aide for

instruction due to significant time needed to process

instructions that must be presented with both verbal

and visual cues. In spite of her difficulties, we are

thrilled that she has come so far in the face of so

many obstacles.

However, every child is different, and I give you this

information only because when my daughter was a baby,

I wanted as much information as possible, even if it

didn't apply to my child. Some kids walk and talk

much later and some kids do better in spec ed

classrooms.

So the best advice I can give you is to prepare for

the worst and hope for the best. Research and take

advantage of every opportunity your community offers

to assist your child such as early intervention. We

were able to access private occupational, physical,

and speech therapies in addition to early intervention

though it took years before we learned of this. They

were paid for by our health insurance. We were also

able to take advantage of state and federal programs

here in the U.S. that helped pay for extra stuff that

we felt were helpful such as toddler gym with

" typical " tots and admissions to indoor playgrounds.

The hardest thing is not knowing. As your child gets

older and you have a better idea of your child's

potential acceptance becomes easier, but for now the

daunting challenge is accepting " not knowing " what the

future holds for you and your child. Take it one day

at a time.

Jeanne mom to Caitlyn age 6 CHARGEr

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