Advice on Dr. Schoffner appt/Recent visit

[Guest guest]

Davonne,

We just got back from Schoffner's office last week....3-16/3-18-04

It was a whirlwind event. I have three children as well. Leaving them

were hard but is our youngest though.

On Wed and Thursday 3-10 and 3-11, I was on the phone with a dr from the

Marcus Institute. They made me an appointment with Dr. Schub for Tuesday

3-16-04. I called at Schoffner's office on Monday and asked her to

fax 's file to Schub's office so he can approve 's Muscle Biopsy.

She was floored. " YOU'RE going to be here tomorrow??? " We said that we were.

She said.. OK call me this afternoon.

When we called her later, she said, " Pack your bags... call the RMH...

and plan to stay a few days. " We did. We arrived Tuesday, We saw Schub

Tuesday. Wednesday, We saw Schoffner. OMG! what a wonderful man!!!! He's

softspoken and doesn't talk above you. He actually caught himself talking

scientific jargon and stopped himself and explained it to us in layman's

terms. We also had pre-op Wednesday and She had her BIOPSY on Thursday

Morning! After 3 years of waiting, the muscle biopsy was done before my head

stopped spinning!

The MC house staff was WONDERFUL... I cannot even believe

our luck! We even got to meet another family who was seeing Schoffner the

day before us. It was an amazing experience. got soooo spoiled during

that time. The hardest time she had was not being able to eat before the

muscle Biopsy. You all know what fasting does to a mito kid. She couldn't

eat after midnight... So I woke her up at 11:15PM to feed her. And when

she came out of surgery... Her lunch plate was waiting... and then just

before she left her dinner plate came. Man, that child sure did put some

food away. (BOTH PLATES WERE EMPTY WHEN SHE WAS DONE )

We, of course, will have to wait 2-3 months from now for the results and

the waiting is probably the hardest part.

The only thing I can say about Schoffner is this... He treated my

husband and I like we were important. He listened to our concerns and our

opinions. He explained what he was going to do. He treated us with respect

and he didn't talk down to us, as so many doctors do. He knew my child,

front - back - sideways and he didn't even really have to look at his notes

in front of him. He spent about 1 hour and 45 minutes with us. After meeting

the man that there are sooo many mixed-feelings about, He is very

knowledgable in his field and he takes time to get to know his " patients " .

Let me know how it goes..

Dorothy

wife to My best friend,

Mom to Kristi, 11(seemingly unaffected) Kaci, 7 (seemingly

unaffected) , 6 (Actual Dx: Developmental Delay - Probable Dx:Mito

and/or Dysautnomia)

> Message: 23

> Date: Sat, 27 Mar 2004 03:38:55 -0000

>

> Subject: re: advice on dr. shoffner appt

> please someone help me on what to expect from dr. shoffner on our

> appt with him 3-30-04 for karlee age 16mos.

> also, if some has a child this age or a child that was diagnosed at

> this age.

>

> thanks!

> davonne