Re: We are here at NIH

[Guest guest]

Cindy, I'm so excited for Dylan and you! I can't wait till it's over

to see what you thought and what if anything, you learn! Thinking of

you constantly!

If you get a chance, would you mention to Nazli, that I would like to

participate in the study and sent her an email asking for an

application? She may recognize the name if you tell her 's Sis,

Lana. Also, if you get time, I had asked for a copy of Clair's talk

at the conference, because my camera pooped right then. She had said

she would send me her notes. If there's any way you can get them,

I'll gladly scan them for everyone and post them if possible. Or

maybe just give her a gentle reminder?

I really want to do the study also. I'm really excited to hear what

you are able to find out! Have you happened to ask about Dylan's

back yet??

Take care, know that I'm sending you hugs! If you get a chance, give

me a call - I know you're very busy!

Love you!

Lana

> Hi all, everyone is really nice. Things get started early around

here!

> Boy did we need to bring more pillows! Theirs are like rubber

cement.

> I'll see S today, and I'll probably have her bring us another

> body pillow. In the last hour, Dylan has already had a bone scan,

> echo cardio, and heart monitor. Breakfast is next. Then we see Dr

> Francomano for 2 hours for an exam.

> /Dr Nazli said last night that they where working on your

> reports yesterday. I'll ask today if they will be ready to send,

and

> I'll let you know.

> The MRI isn't working here so they'll be taking us to another

> hospital to get that test. Everything so far with chair travel. He

> seems to be having fun with it. I'll check in later during some

down

> time and read some posts and tel you all more. TTYL

> Cindylouwho

[Guest guest]

Hi Lana, I'm still waiting for Dr F. she's running late today. I'll

ask her everything when I see her here in a bit. All we have left

today is the physical exam. So far, what we partically have found out

is that they are going to repeat the electrocardiogram. It didn't

look good and they want to be sure it wasn't because of bad placement

of leads. Something showed in the ehco cardio gram and they have

ordered results from his last one at University of Michigan to

compare. The bones density in his back look good, but they are

looking further into the hip bones, they appear to have low density.

Interesting thing is that Dr Nazli said he had the same white streak

in his ehco that they have seen in every type 3 they have seen. Seems

they are thinking they may finally have a tool to test for type 3

when they are done with this protocal. Maybe. They are looking for a

better way to test than the B scale that is used right now, which

they know donsn't work. And they said I can quit wondering if I have

it too. She said I do. I'll check in later tonight when know a bit

more. They are looking into the broken bone in his back, and say it

is very possible that is the problem with his knee, but want to check

the hips too, just to be sure.

Oh, and Dr Nazli said she had just talked to in Arizona.

Congrats , your in the study.

So Lana, I'll ask her your questions here in a bit. And Meagans mom,

I have your papers to give her too. And S, I hope to have your

answer when I see you tonight. Talk to you all later.

Cindylouwho

[Guest guest]

Hi Lana, I'm still waiting for Dr F. she's running late today. I'll

ask her everything when I see her here in a bit. All we have left

today is the physical exam. So far, what we partically have found out

is that they are going to repeat the electrocardiogram. It didn't

look good and they want to be sure it wasn't because of bad placement

of leads. Something showed in the ehco cardio gram and they have

ordered results from his last one at University of Michigan to

compare. The bones density in his back look good, but they are

looking further into the hip bones, they appear to have low density.

Interesting thing is that Dr Nazli said he had the same white streak

in his ehco that they have seen in every type 3 they have seen. Seems

they are thinking they may finally have a tool to test for type 3

when they are done with this protocal. Maybe. They are looking for a

better way to test than the B scale that is used right now, which

they know donsn't work. And they said I can quit wondering if I have

it too. She said I do. I'll check in later tonight when know a bit

more. They are looking into the broken bone in his back, and say it

is very possible that is the problem with his knee, but want to check

the hips too, just to be sure.

Oh, and Dr Nazli said she had just talked to in Arizona.

Congrats , your in the study.

So Lana, I'll ask her your questions here in a bit. And Meagans mom,

I have your papers to give her too. And S, I hope to have your

answer when I see you tonight. Talk to you all later.

Cindylouwho

[Guest guest]

Well, Cindy, a little after I spoke with you, Nazli called me and

accepted me for the study - we just need to cement the dates!

WooHoo! I'm VERY excited! I had sent her another email, as I thought

maybe the first one had gotten lost. Right now, we're looking at the

end of October sometime. Maybe around the 21/22nd.

I did write to Sis to tell her what you said, and of course, filled

her in on Dylan as best as I could. I am going to try to call her

this evening I think, unless the counseling session with Mike doesn't

go well - say a prayer.

I'm sure praying that all of the tests lead to some answers for

Dylan - he so deserves much better in this life!!! I'll talk to you

soon! Take good care of Dylan and YOU!!!!

LOVE YOU!

Lana

> Hi Lana, I'm still waiting for Dr F. she's running late today.

I'll

> ask her everything when I see her here in a bit. All we have left

> today is the physical exam. So far, what we partically have found

out

> is that they are going to repeat the electrocardiogram. It didn't

> look good and they want to be sure it wasn't because of bad

placement

> of leads. Something showed in the ehco cardio gram and they have

> ordered results from his last one at University of Michigan to

> compare. The bones density in his back look good, but they are

> looking further into the hip bones, they appear to have low

density.

> Interesting thing is that Dr Nazli said he had the same white

streak

> in his ehco that they have seen in every type 3 they have seen.

Seems

> they are thinking they may finally have a tool to test for type 3

> when they are done with this protocal. Maybe. They are looking for

a

> better way to test than the B scale that is used right now, which

> they know donsn't work. And they said I can quit wondering if I

have

> it too. She said I do. I'll check in later tonight when know a bit

> more. They are looking into the broken bone in his back, and say it

> is very possible that is the problem with his knee, but want to

check

> the hips too, just to be sure.

> Oh, and Dr Nazli said she had just talked to in Arizona.

> Congrats , your in the study.

> So Lana, I'll ask her your questions here in a bit. And Meagans

mom,

> I have your papers to give her too. And S, I hope to have

your

> answer when I see you tonight. Talk to you all later.

> Cindylouwho

[Guest guest]

Cindy, here is Sis' words, copied from her email!

.......................................................................

Please tell Cindylouwho THANK YOU, THANK YOU, THANK YOU!!! I really

did need those reports on all 3 of us, especially me. Another thing

I really need to know is Isaac's blood type. Mine and 's are

both A positive. I got a questionnaire from the school yesterday

from the nurse's office (because he has so many unusual medical

problems) wanting to know in case of emergency. I've never had

Isaac's tested or told to me. I know they took several vials of

blood from us all while we were in Baltimore, and I am wondering if

they could possibly tell me that, about Isaac in particular, along

with the other information (reports). If Nazli or Clair or whoever

else could even email me with just Isaac's blood type for right now

so I could tell the school, that would be great!

I'm so terribly sorry that they are discovering bad things in Dylan's

body. I already knew he had a cracked/broken vertebrae in his lower

back. I knew it before Cindylouwho found it out, and I had already

emailed her and told her before drs told her. Sis, I literally felt

the bone pain in Dylan, and had been feeling the deep, dull,

throbbing ache that only a fracture gives for some time. I knew it

as surely as I know you are my sister and my name is . Ask

Cindylouwho. She'll tell you that I told her about it before she

found it out from drs. It hurts him like a banshee I tell you!

And constantly without let up, 24-7. I could easily put my hand on

the exact spot this very minute, without being shown/told. I pray

that God, in His infinite wisdom, will perhaps soon allow me to meet

Cindylouwho and Dylan in person....and that I will have an

opportunity to lay my hands upon Dylan and " scan " his entire body. I

can literally feel his energy field and painful areas from here, and

CONSTANTLY. It is almost as though I am somehow partially carrying

some of the burden of his pain to help him....as well as my own.

Physically I am fragile and weak and disabled, but Sis, on the inside

where I really live, I am BIG and STRONG and BRAVE!!!!

.......................................................................

I'm not sure she wanted EVERYONE to know her abilities, but oh

well...I think she would just be embarrased by it, but unnecessarily

so, in my humble opinion! I just wish everyone could know her

AND know YOU the way I'm priviledged to! Two of the very best people

on the face of the earth! And I'm not exagerating, not even a little!

Love Lana

[Guest guest]

Cindy,

Yup, I spoke with Dr Nazli, she seems very nice. I just have to pick

days that I can get off of work and that my husband will be home, so

that he can take care of the puppies.

When you get back home, please email me about your experience and

give any advice on what to bring and so forth.

Good luck with the remaining tests. Hopefully they can figure out

what is going on with Dylan's back.

Jen

> Oh, and Dr Nazli said she had just talked to in Arizona.

> Congrats , your in the study.

> So Lana, I'll ask her your questions here in a bit. And Meagans

mom,

> I have your papers to give her too. And S, I hope to have

your

> answer when I see you tonight. Talk to you all later.

> Cindylouwho