MDA clinic and doctors Need som advice

[Guest guest]

Hi guys,

I need some advice. I have been checking into the summer camp stuff

for the kids as I am finally willing to let them try this adventure, maybe.

Anyway, I got a call from Camp Cuyamaca here in Ca who are an MDA camp. They

said the kids diagnoses qualifies them to go to camp for free. I almost fell

over as every other camp I have checked into that they fit, has been 1000.00 or

more for the week. Which is way out of what we can do times 3. Here is my

question. They said that I needed to register the kids with MDA, and then they

needed to see an MDA doctor. We have always just seen Rick Boles and Bruce

Cohen because of their MIDS diagnoses and the kids being part of the research

Rick is doing. I was amazed at the services that would become available to us

if

we go the MDA route as well. Anyway, do I have to leave Rick and Bruce to go

to the MDA doc? Does anyone know? Or can I use the MDA doc more like the

pediatrician? I love our Pediatrician and really don't want to leave her

either, but we are talking about 1000,00's of dollars of services we would be

getting help with if we were MDA. I have heard good and bad about MDA. Help

guys!

What do you know? What do you suggest?

Thanks

O

[Guest guest]

,

All of my kids also go to camp. This will Branden's first year and he's all

excited. You don't have to stop seeing either Dr. Boles or Dr. Cohen. The

MDA docs usually want to see the patients either once or twice a year and if

needed for specific issues. Keep us posted. I bet you're excited about camp.

Cindy

[Guest guest]

Wow Alice! I am sitting here in tears! I can't tell you how excited I am

about this! It will give us the financial as well as social help we have been

looking for for years now. The kids so want to go to camp, but we just can't

do 1000.00 or more a kid and do all the medical that we are doing right now

especially with Kira's needs. There is only just so much money and so much we

can work. I was under the impression that it had to be one or the other. Thank

you so much! We really do not want to leave Rick Boles as the kids refer to

him lovingly as Uncle Rick, which you can't hope for a better relationship with

your doctor for your children than that! I am so relieved! Thank you so

much Alice!

Hope you are feeling better fast!

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so

much time looking at the closed door, we don't see the open door. Look for

the open doors!

[Guest guest]

Cindy and Alice,

What can you tell me about their camps? I know that there is a one on

one counselor for each child, I am really liking that for sure, Kira and

are excited to go but Krisalynn who is only 8 is not real sure about the

idea. She is my very shy and connected to my hip child. I am excited about it,

but also way not sure, if that makes since. The only time they have been away

from me is when someone is in the hospital or 1 night over nighters. I always

go on everything they are at from Boyscout trips to Girlscout trips, field

trips ect.This is kind of our stepping out year, I am even letting Kira go on

Choir tour with church to San Francisco, I am going with them as I am the

director, but still we will be staying in a youth Hostile, not her normal

environment at all! lets see 56 High school students in San Francisco i think

I have

taken leave of my senses. Anyway I would love to get your input on what we

need to have for them to take and just what it is all about! thanks so much.

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so

much time looking at the closed door, we don't see the open door. Look for

the open doors!

[Guest guest]

,

You do not have to leave your Mito doctors to be seen at the MDA Clinic and send

your children to MDA camp. Walk, don't run and get your kids into this camp

program. It's terrific

Our next MDA chat will feature the following and I'm hoping a lot of Mito

parents come to chat so please pass the word around.

nne

Associate Director of Health Care Services

MDA Summer Camp Program

Apr. 19, Mon., 9-10 PM Eastern

Alice

[Guest guest]

Camp is the greatest. Go for it!!

mitooggo@... wrote:

>Hi guys,

> I need some advice. I have been checking into the summer camp stuff

>for the kids as I am finally willing to let them try this adventure, maybe.

>Anyway, I got a call from Camp Cuyamaca here in Ca who are an MDA camp. They

>said the kids diagnoses qualifies them to go to camp for free. I almost fell

>over as every other camp I have checked into that they fit, has been 1000.00 or

>more for the week. Which is way out of what we can do times 3. Here is my

>question. They said that I needed to register the kids with MDA, and then they

>needed to see an MDA doctor. We have always just seen Rick Boles and Bruce

>Cohen because of their MIDS diagnoses and the kids being part of the research

>Rick is doing. I was amazed at the services that would become available to us

if

>we go the MDA route as well. Anyway, do I have to leave Rick and Bruce to go

>to the MDA doc? Does anyone know? Or can I use the MDA doc more like the

>pediatrician? I love our Pediatrician and really don't want to leave her

>either, but we are talking about 1000,00's of dollars of services we would be

>getting help with if we were MDA. I have heard good and bad about MDA. Help

guys!

>What do you know? What do you suggest?

>

>Thanks

> O

>

>

>

[Guest guest]

Since I'm Grandma not Mom.. I'm going to let Cindy answer this for you but

Branden who is 6 is going for the first time this year - and can't wait - and

Kaylee who was much like you discribed Kristalynn went when she was 6 - and told

her mom until the busses came and all the firemen that make the escort out of

town so exciting that she wasn't going. She is extremely excited every year and

can't wait for camp and she's still very attached to her mom.

You just don't have any idea how much they love this camp venture. They are

well taken care of.

I'll let Cindy say more.

Alice