RE: re:Kansas/Missouri-Missy

[Guest guest]

Missy,

I do know where the Metro North Mall is. I don't go up North too often, but

I have been there. Alyssa is not in preschool or childcare at this time.

Because she is a Nov. baby she won't start kindergarten until she is nearly

six. We will probably do preschool starting next year. Right now, I enjoy

having her at home with me and our 4 month old Lauryn. I will have to look

up Dr. Friesen. We try to see our CM docs at the center out South, since

it's closer.

The only other family I have known of is one that lives by Belton, MO. She

was on the list about9 months ago or so, but I haven't seen any posts from

her for quite a while. They had a 4yr old son I believe.

It's nice to know there is someone else around!! Maybe we can do a

fundraiser for MAGIC together or something.

Dayna

_____

From: Missy

Sent: Wednesday, February 09, 2005 9:32 AM

To: RSS-Support

Subject: re:Kansas/Missouri-Dayna C

Dayna,

It doesn't appear that we have any doctors in common. We see

Huseman at CMH for endo, Batterson at CMH for psych and Gupta in OP

is his orthopedic dr. He doesn't really have a PCP because he sees so

many other people for his needs. When he had a feeding tube, his dr

was Friesen at CMH. We really liked him and had heard from others

who also really liked him. I don't know if he still practices at CMH

or not, I know he did a few years ago.

I have spoken on the phone over the years with a some parents who

have kids with RSS. One was in Kansas, but they were not local.

Another was nearby, but their child had many other issues going on

that were more severe than RSS. I even got a phone call at the non-

profit that I worked for from a mom who had a child with RSS. We

talked for a bit,but when I tried to call her back at home, I was

never able to reach her. They were not from the US, so I don't know

if they were planning on staying in the US or not.. I even contacted

another family that told one of their dr's that they wanted to talk

to another family, but then I never heard back from them. So, I know

there are a few in the local/outlying areas,but haven't kept in touch

with them.. I know we were the only family for probably the first 3-4

years of his diagnosis and then I started getting comments from the

doctors of other families.

We live North of the river in Kansas City. We live about 3

minutes from Metro North Mall. Do you know where that is? Ian attends

a school in the North Kansas City school district. Do you have

Alyssa in preschool or childcare?

Missy