Re: NIH findings so far/Bernie

[Guest guest]

Hi Bernie, I have the Bloodtest results with me. And the electrocardiogram. The

made a copy of the MRI for me to bring home, but it hasn't been read by the

radiologist yet. I don't think they normally do that, but because Dylan has some

back issues that need more work up, they let me have them. And yes, they did

discuss with us how each problem could affect him, and what added work up needed

to be done at home. They help the best they can with all the findings and give

you names of Drs' in your area if they know any. I knew going in that they don't

treat, but just like I thought, they are wonderful about getting all the

information out in the open and a list of follow up tests needed. They did not

make an educated guess about his future, but I didn't ask. I think I was afraid

to. I could tell they where very concerned about finding so many things. It's

like he's turning into a rubber doll. I can still email her and ask If I decide

to.

Cindylouwho

RE: NIH findings so far//Cindy

Do you know if NIH provide you with the actual copies of the blood tests

and copies of the Echo, MRA etc. reports?

Cindy, you must be exhausted form assimilating what all this information

means for Dylan's future. Did they provide or hint at prognosis with

each of these different identified problems....or were they even willing

to venture an educated guess?

Bernie