wymom94

[Guest guest]

Meghan-

I really enjoyed meeting you, Russ and Wyatt at the conference. I am

TERRIBLE at keeping track of email addresses/phone numbers etc..

unless I get them on my computer right away. Since your info was on

a piece of paper in my purse...I can't find it The kids thought

Wyatt was a lot of fun and and I really enjoyed getting to

know you guys. I think if you try to post email addresses here they

get cut off ?? I will try though clwild1@...

that seemed to work ?!

Please email me when you get a chance- thanks !!!

Have you decided where to take Wyatt for his care ?

We have had some confusing but good news from our new 'care

coordinator'- ie pediatrician for Braden as far as his doctors go.

The former GI didn't feel comfortable with being a general overseer

of his care because he is so complicated- I hate thet word

complicated and the hepatologist locally says the same thing. They

are at least eager to help as much as they can with helping us find

the right group to help Braden. Before there not wanting to see

Braden felt

more like a lack of caring- so this at least feels better.

The out of team state we saw is finally doing a case review what

their next radiology grand rounds/review meeting The FAP, short gut

and now immune deficiency- that we just discovered

for Braden makes him a little too 'risky' I think to want to take on

for most doctors. I am really hoping you can find a group/team of

doctors you guys are comfortable with and am looking for the same

thing for us. The specialists he most recently saw are more

concerned about his short gut right now- but I if course -as is

typical for me ...big eye roll...see things differently than they

do. I am also concerned about his pancreas and am concerned about

not knowing where he is at liver-wise right now.

hope to hear from you soon

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

[Guest guest]

>

> Meghan-

> I really enjoyed meeting you, Russ and Wyatt at the conference. I

am

> TERRIBLE at keeping track of email addresses/phone numbers etc..

> unless I get them on my computer right away. Since your info was

on

> a piece of paper in my purse...I can't find it The kids thought

> Wyatt was a lot of fun and and I really enjoyed getting to

> know you guys. I think if you try to post email addresses here

they

> get cut off ?? I will try though clwild1@...

> that seemed to work ?!

> Please email me when you get a chance- thanks !!!

> Have you decided where to take Wyatt for his care ?

> We have had some confusing but good news from our new 'care

> coordinator'- ie pediatrician for Braden as far as his doctors go.

> The former GI didn't feel comfortable with being a general

overseer

> of his care because he is so complicated- I hate thet word

> complicated and the hepatologist locally says the same thing. They

> are at least eager to help as much as they can with helping us

find

> the right group to help Braden. Before there not wanting to see

> Braden felt

> more like a lack of caring- so this at least feels better.

> The out of team state we saw is finally doing a case review what

> their next radiology grand rounds/review meeting The FAP, short

gut

> and now immune deficiency- that we just discovered

> for Braden makes him a little too 'risky' I think to want to take

on

> for most doctors. I am really hoping you can find a group/team of

> doctors you guys are comfortable with and am looking for the same

> thing for us. The specialists he most recently saw are more

> concerned about his short gut right now- but I if course -as is

> typical for me ...big eye roll...see things differently than they

> do. I am also concerned about his pancreas and am concerned about

> not knowing where he is at liver-wise right now.

> hope to hear from you soon

> Lori

> lucky mom blessed with wonderfully wild 10 year old triplets

>

In case you didn't see this yet- the rest of the email address that

did get cut off when posting here is comcast.net