Re: [Fwd: ander 5mos. w/ charge]

[Guest guest]

Welcome Holly and !

I am the parent of a 13 year old daughter with CHaRgE and we did not go

through the feeding problems but the rest sounds familiar. I can remeber

how tough everything was in the beginning and just want to say you have

come to a group that understands and wants to help you through this

time...it won't always be this tough!!! I will let others answer your

questions on the feeding stuff but once again welcome and ask or say or

scream anything you want..this is a no holes barred group.

Take care,

Jackie Kenley in San Francisco, mom to 19, nah 15 and Miz

the CHaRgEr 13... also wife to Mac the wonderful Dad

[Guest guest]

Welcome Holly and ! It sounds like both of you have really been

through the ringer these past 5 months. Don't worry..things go get better.

To all others:

Oran had his first Pysc eval this morning for the Babies Can't Wait program.

Although we haven't seen the results yet, the evaluator did indicate that

Oran's scores were low. I spent most of the morning feeling bummed

out....but I'm over it now. I've decided to turn my thoughts to more

productive topics...like how I am going to use this to my advantage! Tim and

I have been looking into daycares for kids with special needs as we want to

send Oran somewhere part-time. I called a place this morning and they told

me that if it was determined that Oran needed " special instruction " by the

EI group, they would pay a portion of the cost. Some good news at last!

The evaluator this morning decided Oran did need this " special instruction "

so we are just waiting to find out how much.

Does anyone know what " special instruction " is? I know I have read a lot

here on the list about these evaluations and they seem pretty harsh, how

have your kids done afterwards? Are the kids really as " bad " as they make

them seem?

Trish, mom to Oran (ChaRge) 2, wife to Tim

Atlanta, GA

At 09:22 PM 9/20/98 +0000, you wrote:

>

>Message-ID:

>Date: Fri, 18 Sep 1998 19:53:04 +0000

>

>X-Mailer: Mozilla 4.02 [en]C-DIAL (Win95; U)

>MIME-Version: 1.0

>To: chargeCHARGE@...

>Subject: 5mos. w/ charge

>Content-Type: text/plain; charset=us-ascii

>Content-Transfer-Encoding: 7bit

>

>Hello to all

>

>My name is Holly Sauer mother of who is almost 5mos. and has

>charge syndrome. These first months have been the hardest for us

>finding out all the medical problems our son has. From being told he

>has severe hearing loss, coloboma to his optic nerve in his right eye an

>can see some with his left eye, to having bilateral renal reflux,

>feeding and swallowing problems with the g tube, to having pulmonary

>stenosis and Asd. We have been through cardiac catherization, g tube

>and fundo surgery and have heart surgery to forward to. Right now it

>has been 18 days since g tube and fundo surgery and he started to have

>coughing and gagging fits at night that last for 5-10 min. he has so

>much saliva and no one seems to understand.

>I'm new with all this and if anyone has similar things going on I would

>love to hear from you.

>Thanks Holly ( 5mos. charge)

>

>

>

>

[Guest guest]

Hello Holly,

Welcome to the list. I'm sure you will find it invaluable. I need my daily

visits to " Charge Land " to survive!!!!!

My son Jack is 14 1/2 mths old now and I can honestly say that it does get

better.As Michele said it's not the life I had planned for our family but we

could not imagine life without Jack.We still have our ups and downs but we're

much more comfortable with the whole CHARGE thing now.

I just checked Jack's chart and at 5mths he weighed 10lbs 2oz and was 59cms

tall. He now weighs 16lbs9oz and is 69.5cm tall.Mainly due to having " Duocal "

added to his formula/food as he only eats by mouth and doesn't eat a lot.

By the way,Jack also has pulmonary stenosis,VSD and double outlet right

ventricle.He is still waiting for surgery.The cardiologist wants to wait until

he's 10-12kgs(22-24lbs) before he has the surgery so I guess it won't be for a

while yet.Jack's heart seems to be coping well at the moment and the bigger he

is before surgery the better.

Take care

Elaine mum to Elise(6yrs) & Jack(14 1/2mth)CHaRGE

Dumfries,Scotland

[Guest guest]

william a sauer jr wrote:

>

> ---------------------------------------------------------------

>

> Subject: 5mos. w/ charge

> Date: Fri, 18 Sep 1998 19:53:04 +0000

>

> To: chargeCHARGE@...

>

> Hello to all

>

> My name is Holly Sauer mother of who is almost 5mos. and has

> charge syndrome. These first months have been the hardest for us

> finding out all the medical problems our son has. From being told he

> has severe hearing loss, coloboma to his optic nerve in his right eye an

> can see some with his left eye, to having bilateral renal reflux,

> feeding and swallowing problems with the g tube, to having pulmonary

> stenosis and Asd. We have been through cardiac catherization, g tube

> and fundo surgery and have heart surgery to forward to. Right now it

> has been 18 days since g tube and fundo surgery and he started to have

> coughing and gagging fits at night that last for 5-10 min. he has so

> much saliva and no one seems to understand.

> I'm new with all this and if anyone has similar things going on I would

> love to hear from you.

> Thanks Holly ( 5mos. charge)

Hi Holly,

My son is 16 months. He was 5 lbs, 17.5 inches at birth and at

5 mths he was about 10 lbs. He is now about 24 lbs, 32 inches. He has

been through 2 fundos and 6 other surgeries and 3 hand operations to

come. The first fundo herniated through his diaphram from all the

coughing and retching he did. The gagging is really next to nothing

now, but it took alot of figuring out what tips over the edge:

a cold where he has too much mucus to swallow or too much in his stomach

at 1 time (he gets 3 small bolus feeds during the day and is on

continuous over night). The key is not to let them gag and retch (I

know this is hard), because this is how he ruined his first fundo.

has moderate-severe hearing loss, low-set cute ears, had choanal

atresia (totally blocked and had stents for 8 months), bad problem with

reflux, right sided aortic arch and pulmonary narrowing, partial facial

palsy of the left side of the face and bilateral cleft hands. We lucked

out that he does not have any major vision impairment, I guess we got

deformed hands instead. He also has swallowing difficulties. He is

very happy, growing and learning everyday. He crawls, sits himself up

and stands himself now. These kids will come along way with alot of

help. Hang in there and think good thoughts of encouragement for your

child. Things are coming together for us as they will for you.

Debbie Matasker ( 16 mths/CHARGE, almost 4)

[Guest guest]

Trish and Tim,

Has Oran been in an early intervention program over the past 2 years? Every

state and county is supposed to have early intervention services for children

with special needs. Of course, each county works differently and services may

be good, bad or almost nonexistent, it seems. The big thing with these

services is that they are to be provided to the children at no cost to the

families. Families Together, an advocacy group, lobbied very strongly for

this federal law. Perhaps part of the special instruction the school is

mentioning is different types of therapies, like OT, PT and/or Speech? Also

maybe working with an early childhood teacher on specific developmental

issues?

My son is in an Early Childhood Special Ed. class through our school district.

He started when he was 3 and can stay in until Kindergarten (we probably will

try to have him start K late - at 6 yrs. instead of 5). Anyhow, usually they

perform I.Q. testing on children who are in this type of program. With Austin

we did not allow any formalized I.Q. testing to be done. Our reasons were

many but mainly we did not want the stigma of him getting a low score to

affect what types of outcomes would be expected of him. Secondly, Austin,

like several Charge kids, is considered to be " deafblind " by our state. This

condition, which does not mean that he is totally deaf and totally blind, but

rather that the two main learning modalities are impaired to some degree,

extremely impairs learning and the ability to " learn " and gather information

and make sense of it. To date, there are no good I.Q. tests for the deafblind

population. It is a very misunderstood condition and it is easy to label a

child as severely mentally retarded because the deafblind issues are not dealt

with.

I, like many other parents, know that my Charge child is very bright. It is

amazing the things that he does and he knows. He is delayed like most of the

children and it takes longer for him to learn some things but once he knows

something - he's got it! Sorry that this is going on so long, I've been off

the list for a while and I guess I have a lot stored up!!!

The two main points I am trying to make are: there should be state supported

and paid services for your son, especially until he is 3 and enters the school

system. And 2, don't let psych./I.Q. testing get your hopes down for your

child. You are the best tester of your child and I say push for the best and

expect a lot from both the people who work with your child and from your child

himself.

I like a quote and I have only heard it from Kay, so I don't know if she

originated it or not, paraphrased it is: Shoot for the moon - at least you

will land among stars.

Jacque Clifton

Austin's mom (almost 4 y.o w/CHaRgE)

[Guest guest]

Trish,

You will probably be on top of the world then to get Oran into a social

setting! I was soooo scared and pessimistic when Austin started preschool and

now I find myself saying " why can't it be everyday for 8 hours a day!! " He

does thrive in the setting but so do germs and right now we are fighting all

the sick stuff. Real bummer.

Every day Austin does stuff to amaze all of us. Today was the funniest. Even

though he has been sick and his button is bleeding (my earlier posts address

this and I was a little more upset then) when it came time to feed him the

nurse tried to give him turkey dinner baby food. She said " Oh isn't this

good, Austin? Here's your dinner. " and gave him a bite. After that bite he

looked at her, snatched the spoon like, " Excuse me, but I do NOT want any of

that stinking turkey dinner " , and JABBED the spoon into the next compartment

where the apple-banana dessert was!!!! I was laughing and crying at the same

time. He is sooo smart that sometimes it just brings me to tears. There was

no doubt at that moment as to what Austin wanted. I think he is going to have

a big sweet tooth.

It was a really great moment. Oran will provide the same surprises to

everyone too. It is true that our kids are amazing!!!

Jacque Clifton

Austin's mom (almost a 4 year old!)

[Guest guest]

Jacque:

Oran just recently got involved in the EI program. I called them about a

year and a half ago, but the person who answered the phone told me that my

insurance was good enough to cover all his needs and they couldn't offer me

anything extra. Later found out this was all wrong...anyway that was the

reason for the delay.

Oran's hearing tested above normal when he received an ABR test. He has

colobomas in both eyes which involve the optic nerves extensively. He does

seem to have very good vision. With the help of the EI program, we have

found a daycare for medically fragile children. Although Oran is not in the

least bit fragile, we thought this would be a good place for him. He will

receive PT, OT, and ST through their staff therapists. He had previously

been getting these services through a hospital here. My husband, Tim, has

been self-employed from our home with Oran for the past 9 months, and while

he has done a great job, Oran is bored out of his mind. Oran is now ready

to be around other kids and needs more structure and stimulation than he

gets at home. He will attend the daycare from 9:00 to 2:00 each day and

will end up getting more therapy through the center than he had previously.

As everyone keeps talking about the school system, I was getting very

nervous and I know a lot of the parents in Chargeland have had some bad

experiences. I guess I can only hope that things will go well.

Austin sounds just like Oran - while it takes them longer to pick it up,

when they get it, they really get it. I find that once Oran understands the

basic concept, he can take it to the next level really quickly. We haven't

received the EI assessment yet, and I am debating whether I will even read

it. I know my curiosity will be too much and I will read it, then I will be

bummed out for a few days, then I will totally disregard what it says and

continue to believe in Oran's ability (this is the cycle I usually follow!).

Sorry to be so wound up, but it really is therapudic (sp?) to be able to

unload all of this on people who really understand and who wish the best for

my child.

Trish, wife to Tim, mom to Oran (2) ChaRge

Atlanta, GA

At 12:33 PM 9/28/98 EDT, you wrote:

>From: JClif222@...

>

>Trish and Tim,

>

>Has Oran been in an early intervention program over the past 2 years? Every

>state and county is supposed to have early intervention services for children

>with special needs. Of course, each county works differently and services may

>be good, bad or almost nonexistent, it seems. The big thing with these

>services is that they are to be provided to the children at no cost to the

>families. Families Together, an advocacy group, lobbied very strongly for

>this federal law. Perhaps part of the special instruction the school is

>mentioning is different types of therapies, like OT, PT and/or Speech? Also

>maybe working with an early childhood teacher on specific developmental

>issues?

>

>My son is in an Early Childhood Special Ed. class through our school district.

>He started when he was 3 and can stay in until Kindergarten (we probably will

>try to have him start K late - at 6 yrs. instead of 5). Anyhow, usually they

>perform I.Q. testing on children who are in this type of program. With Austin

>we did not allow any formalized I.Q. testing to be done. Our reasons were

>many but mainly we did not want the stigma of him getting a low score to

>affect what types of outcomes would be expected of him. Secondly, Austin,

>like several Charge kids, is considered to be " deafblind " by our state. This

>condition, which does not mean that he is totally deaf and totally blind, but

>rather that the two main learning modalities are impaired to some degree,

>extremely impairs learning and the ability to " learn " and gather information

>and make sense of it. To date, there are no good I.Q. tests for the deafblind

>population. It is a very misunderstood condition and it is easy to label a

>child as severely mentally retarded because the deafblind issues are not dealt

>with.

>

>I, like many other parents, know that my Charge child is very bright. It is

>amazing the things that he does and he knows. He is delayed like most of the

>children and it takes longer for him to learn some things but once he knows

>something - he's got it! Sorry that this is going on so long, I've been off

>the list for a while and I guess I have a lot stored up!!!

>

>The two main points I am trying to make are: there should be state supported

>and paid services for your son, especially until he is 3 and enters the school

>system. And 2, don't let psych./I.Q. testing get your hopes down for your

>child. You are the best tester of your child and I say push for the best and

>expect a lot from both the people who work with your child and from your child

>himself.

>

>I like a quote and I have only heard it from Kay, so I don't know if she

>originated it or not, paraphrased it is: Shoot for the moon - at least you

>will land among stars.

>

>Jacque Clifton

>Austin's mom (almost 4 y.o w/CHaRgE)

>

>------------------------------------------------------------------------

>