Re: Welcome to CHARGE and MORE/Conference

[Guest guest]

Just to add to what Bonnie said about the conference. First timers can apply

for a scholarship if they belong to the CHARGE Foundation. Thats how I attended

my first conference in 2003. Our daugher is 20 and we didn't hear about CHARGE

until she was 17 years old. She was labled " medically fragile " . It's a long

story but when I attended the conference I could find our " " at may ages.

I especially remember a two year old that could have been 's twin.

I will have to miss the Miami Conference but would highy recommend it to new

families.

The conference erased 17 years of feeling alone. I though I was the only

mom of a kid like mine. I have been on the list now for three years. It is

like family.

Lynn

Ohio

Mom to Tom25, 20 cHARGE and wife to Doug

Welcome to CHARGE and MORE

Welcome everyone who is new here! There certainly are tons and it seems the

list is growing every day. This list is one of the best things in my life.

Here I have met and continue to feel safe and comforted by everyone. It is a

place to learn, vent feelings, ask for support, or just share something funny.

Without this list I would have to seek a therapist! Ha!

But with all the new people here it must be explained that being on this list

doesn't constitute being a member of the CHARGE foundation. The address and

information about that is below each post. Being a member of the foundation

is just as wonderful as well. You receive a newsletter-this one was about the

CHARGE Gene. Also your donation to the newsletter helps with various parts of

the foundation, such as the gene research.

Along with that there is an International Conference every two years. I have

to say that is one of the most important things we do in our lives here. If

you can I would emphatically suggest attending the conferences. The

information presented is vital to our children. There are also many

professionals who

attend are also vital to our children's lives. They are the most compassionate

and informative professionals out there! Yet just as vital is the networking

and meeting the people on this list. It feels like family!

The first time I attended one about 6 years ago brought chills to me. I had

thought our lives were unique. I thought our daughter was unique. Then as I

stood in the lobby of the hotel I saw 25 " Patty's " running around, crawling,

rolling, coughing, throwing their heads in a unique position, ... and so much

more. I thought that extreme feeling was just because it was our first time

and

I would get used to it. Not so. Each one is better than the last.

I know our family will have our vacation this summer in Miami at the

conference. I hope somehow many of you can find a way to attend. It is just

about

the best thing ever besides this list.

Bonnie, Mom to a 22, Patty CHARGE 20, and wife to

[Guest guest]

Lynn: Please tell me all you can about . I know that's a tall, tall

request, but there are so few of us on this list with older kids. is 20,

too. I hope to attend the Miami conference - if only to see other kids who

aren't tiny (which definitely isn't!)

Is at home? On and on. Just tell me what pops into your head at

even odd moments!. What happened during puberty? is now on

hormones and is tremendously proud of her breasts! As a matter of fact,

she readily takes the hormones when I tell her the reason... Does

have OCD and/or SIB? Does she...just fill in any blanks you can imagine.

Again, a tall, tall order. Thanks - Martha

[Guest guest]

Martha,

is an older Charger, as well, but she is small. She is

24, 62lbs and 4ft. We attended the conference for the first time in

Cleveland, it was an awesome experience for both of us.

I believe that it was there that finally realized that when

she engages in her behaviors she is either hurting herself, someone

else or both. While I was attending sessions was in the

child care room with more one to one aide, upon entering the room a

boy had gone up to and began pulling her hair, it was

apparent that she was caught off guard and surprised that someone

besides her could do that to another person. After they were

separated I explained to her that by that having been done to her by

someone with the same Charge attitude, she should now know how it

feels when she does that to us. We will be attending the one in

Miami this year, probabaly treating it as our vacation as well.

Although is older, she is probably at a kindergarden level

in most things. She is non verbal, yet understands simple verbal

instruction. Her Mother has decided against any hormones, but it is

definately noticeable that she cycles at the same time each month. I

think that is the only time that she gets really feisty with me.

is only able to eat blended foods and thickened liquids,

she has a g-tube that we use when she is sick or not eating enough.

We are in the process of getting to a motility specialist to figure

out what can be done with her hiatel hernia and the fact that she

isn't swallowing well. She needs to be dialated but that can't be

done without the hernia removal, of which no one will do because of

her medical complications. Her GI just " kicked " her out of his

practice because he was told he can't see her any more because of her

age. We just had an orthopedic appt. and 's scoliosis has

gone frome 21 to 33 degrees in a year, so we have to go back in 6

months and see what can be done. Surgery was mentioned, but for her

it really isn't an option. One leg is also 2inches longer then the

other and we are hoping to get a lift for her shoe soon. Her hips

are located, which is a total surprise to me! had a CT scan

of her temporal lobes this week and I think that we may be heading in

the direction of some answers. We saw a Neuro ENT and he had heard

of CHARGE, but only in his residency. He thinks that he may do

surgery, pending the test results. She has moderate to severe

hearing loss but her ear infections have never been under control, I

am hoping for an end to that really soon.

goes on outings in the community with someone from a day

program, 9 hours a week. She goes bowling, to the movies and park

and does crafts. Projects are usually hand over hand because she

doesn't like to get messy or really has no interest in doing

something.

, caregiver to , CHARGE

[Guest guest]

also has SIB, she picks at her skin for no apparent

reason. When she notices that her body is blemish free she will dig

at herself until she bleeds. Sometimes this is all just for a piece

of Tegaderm.

[Guest guest]

: I have a raging sore throat all of a sudden and must crash, but I

have to thank you for writing so quickly. As soon as I feel better, I'll

probably swamp you with questions. I've been in touch with one other

care-giver for an adult CHARGEr here in Missouri but have yet to meet her

or her charge (no pun intended...). I hope to do so soon.

Where does live - group home, with parents, what? Oh, I have

so many questions! But it's time for my meds and sleep. More tomorrow.

Thanks again for answering so quickly. I hope to goodness that when

Andy and I aren't around any longer that this list will be and that 's

care-givers will have access. That's not meant to be the least bit somber

--- as a parent who had no input about CHARGE and/or deafblindness for

's early years, I want the contacts to grow and grow as she does.

On that chipper note, I'm going to curl up. Martha

Note: I was just rereading your post. Please tell me about 's

behaviors. I'm busy filling out forms for our " Regional Center, " and it's

amazingly difficult to explain why she needs so much help but isn't a total

basket case. Having put that in writing, I know I must be sick...Till later -M