Re: Welcome Newcomers and Thanks.......

[Guest guest]

Cydne,

Thanks so much for telling us more about Amy, I love the " Lucy " story!!! I can

imagine my little girl doing something like that when she gets older, at 2 we

are already calling her a " ham " all the time. Sounds like you have been through

a lot and I hope things get straightened out really soon.

Mom to Kennedy 23 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Welcome Newcomers and Thanks.......

Hi.....Welcome to the list and Thank You to everyone that wrote in regarding

my Lip sucking, Finger picking, Constant motion daughter, Amy! I related to

what each of you had to say and was very interested to hear that some of these

behaviors may not change. Also; Casey mentioned that her son did alot of acting

and I am interested to hear if any other children carry on this way. As I am

recently new to the list and have not shared much about Amy I thought it might

be a good time with so many new members on the list.

My daughter Amy is now 6 years old and she and her sister Georgia (8 yrs.

old) are the heart of my heart & Joy of my life....but at 6 months I felt like

Amy should be 6 years! In the first 160 days of her life we made 120 emergency

trips to the University Hospital in Edmonton. The other 40 days she was in

hospital. We lived on an acreage until she was almost 6 so I felt very isolated

and lived in fear of her medically fragile condition.

Amy is deaf/blind.....at birth they said she was both deaf and blind due

to the tests they conducted but at 6 months I recognized a delayed response to

sound and I was elated!!! Amy got hearing aids a few months later and her

hearing again improved and she began to speak! Her hearing tested at a 10

decibel loss for both ears for the next year & a half and we opted not to put

the hearing aids on during that time. I provided constant Visual and Auditory

Stimulation.....Flashing Christmas Lights that played music hung over her crib

for ages, I always placed her by the radio speakers, had CNIB shakers and

rattles, mobiles, etc which I believe all contributed to her development.

Over the course of her years her hearing has deteriorated. First her

left ear became profoundly deaf and last year her right ear (good ear & good

side of her body) began to deteriorate. She is currently booked for a Cat Scan

to look at her ears again and from there we may proceed with a procedure that

has a 50/50 chance of success or total deafness. It looks as though Amy will

eventually become totally deaf. Her hearing test recently indicated a

significant loss again and over the last week I have noticed she seems even more

deaf! We go back to the Dr. today. Yesterday she ended up in the infirmary at

school - turned blue around her mouth and eyes and appeared grayish in color

from mid morning on. She fell asleep - deeply - and had to be woken after

school. Everyone is concerned about the change in Amy over the last while. She

was also terribly off balance (more than usual) and unable to comprehend and/or

hear - she has not been sleeping at night even though she gets melatonin every

night. She will walk around, get in & out of her sisters bed and/or my bed then

go back to her bed where she talks and laughs and moves her arms all about for

hours. She was Tim the Tool Man from Home Improvements for a couple of years so

she had to have all the tools, clothes, etc. that Tim wore - she even laughed

like him! Now she is in love with Ricky from I Love Lucy! She gets my

guitar and sits in front of the TV and plays along and sings with Ricky! She

really is a hoot but I think this may not be good for her. When she was little

- age 2-3 she would do all the actions and babble at night. I believe she was

doing reruns of the days events and conversations and she did this constantly.

Amy says that Ricky is in Heaven and when ever she gets upset with me she throws

her head back and yells up at Heaven " Ricky, Mom is acting Just Like Lucy

again!! " It is funny and she really loves to make people laugh and has a

fabulous sense of humor but I wonder where Her personality is sometimes. If

anyone relates would you please tell your stories!

Amy also had VSD & ASD both of which are now corrected as of December 98.

She has balance problems that vary from day to day, urinary problems, has had a

g-tube & fundoplycation? since she was 4 months old, walked at about 3 yr. old

(due to her walkers & with Hours & Hours a day of back-breaking hand- held

walking). Amy eats pureed foods orally but is only allowed honey consistency

liquids again as her last tests indicated she is refluxing badly and aspirating.

She has gone backwards in regards to eating.

Amy's speech has improved immensely and I am so glad we got her hearing

aids a.s.a.p. as any speech and sounds she was/is able to receive has helped her

immensely for current and future communication. She is blind in her left eye

(size 5) and is at best - legally blind in her right ( 70% of her retina is

attached). She has bi-lateral colabomas and no possibility for improvement but

she wears glasses with 300 magnification in the right and 1200 in the left which

is mainly so her eyes appear closer to the same size.

There have been numerous hospital stays and emergency trips and on average

one specialist or Dr. visit a week. She has been suctioned for years but this

has not been necessary for the past year or more. She has also been off and on

Oxygen all her life. Her best time of the year is between April and September -

why I am not sure but this has also improved every year.

Amy is now in grade 1 and fully included in a regular classroom and has a

full-time assistant. She is learning Braille this year and is keeping up with

her classmates and surpassing some of them! Everyone Loves Our Amy and she has

the Best Big Sister in the World!!

I will end here as I have been accused of not being able to speak in short

sentences. Now everyone knows!

Again.....Welcome and as has already been said....Charge children are tough,

happy and truly Extraordinarily Precious Gifts!

Just an interesting addition: There was a Charger in northern Alberta that

had good hearing until they were about 10 years old and within one week they

went totally deaf. They proceeded to do Cochlear Implants but found during

surgery that her main artery ran straight through the middle of both ears and

they were unable to do the implant.

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[Guest guest]

Hi ....Do you ever feel that the imitation our children partake in is odd

or harmful in some way? Amy was in love with Tim for the past two

years...she had everything that Tim had: plaid shirts, tool belt, truck, tool

kits, she laughed just like him and she would use phrases and talk like Tim.

This has changed to a major infatuation - love for Ricky Rickardo? in I love

Lucy but she is play acting through the night, when she goes to bed and when I

go in to get her up in the morning she is cross with me bacause she was having

or acting out a major rerun of I Love Lucy! She doesn't want to get up for

school and until about two weeks ago she Loved School! I just don't get it....I

have to dress her and it is either a struggle or a battle which sets the morning

off to a poor start. Amy watches the show too much I think - she even stops and

rewinds favorite parts Over & Over - She can't seem to get it out of her head!

This obsession has just replaced her obsession for Tim! Amy seems unable to be

reasonable about any of this in any way. If you or anyone else can help me with

this or give me some of your stories and insights I would appreciate it - Alot!

I sure feel for all of you that are going through difficultt times right now.

As hard as it is, try to remember that Today is the Only Day you need to get

through. I have a little inspirational story that I would like to share with

you.........

Once upon a Time in a far away land there lived a very mean King. He was

often struck with periods of despondency. One day he asked his Prime Minister

to come up with something that would make him Happy when he was Sad and Serene

when he was he was elated.

The Prime Minister was left with the task of solving the Kings dilema by

morning or face execution. The following morning the Prime Minister presented

the King with a gold ring. Inside the ring was an inscription that

read.... " THIS TO SHALL PASS " .

Hope this Helps!

Best Wishes to you All!

Cydne Park - Mom to Amy (6) Charger & Georgia (8) & Wife to No one!

Re: Welcome Newcomers and Thanks.......

From: Mshrg1@...

Cydne, I just thought I'd tell you that for the last month Hannah has been

Nanny Cook, I'm Anita Darling and my husband is . We are all part of

her world of 101 Dalmations. I really love to me Mom when she lets me!!!

These kids seem to have a very large imagination or vision!!! Hannah is

almost 5....

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