RE: Feeding clinic and patience at the conference

[Guest guest]

,

This is the ONE place you will never be " banished " !!! If there's ever a

time you will be surrounded by understanding people (who may actually even

be of some help!), it will be at the conference. Hugs,

Lis

>

> Hi everyone!

>

> I have been a lurker all summer and love hearing about all the kids

> updates. I wanted to update you about Makenna.

>

> She has been at a feeding clinic all week and is set to come home

> tonight after dinner. She is officially off all tube feedings!!!!!

> (which was our goal) and was also cleared to drink thin liquids. It

> has been a huge week for her and us. We are still getting some

> unwanted behaviors during meals so when dad and I feed her she cries

> and yells a bit. We are taking the training to the hospital cafeteria

> today to see how she does, should be interesting. That is where the

> request for patience comes at the conference - hope everyone

> understands if she is vocal about her unhappiness during meals at the

> conference. I told Jay we will probably be banished to the farthest

> corner during meals LOL!

>

> Can't wait to see everyone at the conference! We will be getting to

> California on Thursday early afternoon. I am getting really excited.

> Makenna can't hardly wait to be reunited with Mickey Mouse!!!!

>

> See you soon,

> , mom to Makenna age 6!

>

>

>

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Way to go Makenna; and mom and dad of course.

When are you going to Disney?

Jeanie Colp

mom to MacKenzie 9 CHARGE

[Guest guest]

,

this is amazing news!! Congratulations. and you know what...my guess is that

Makenna might have more company than she wants because we will all want to see

this big girl!! Banished?? Don't even think about it!!!

pam

Feeding clinic and patience at the conference

Hi everyone!

I have been a lurker all summer and love hearing about all the kids

updates. I wanted to update you about Makenna.

She has been at a feeding clinic all week and is set to come home

tonight after dinner. She is officially off all tube feedings!!!!!

(which was our goal) and was also cleared to drink thin liquids. It

has been a huge week for her and us. We are still getting some

unwanted behaviors during meals so when dad and I feed her she cries

and yells a bit. We are taking the training to the hospital cafeteria

today to see how she does, should be interesting. That is where the

request for patience comes at the conference - hope everyone

understands if she is vocal about her unhappiness during meals at the

conference. I told Jay we will probably be banished to the farthest

corner during meals LOL!

Can't wait to see everyone at the conference! We will be getting to

California on Thursday early afternoon. I am getting really excited.

Makenna can't hardly wait to be reunited with Mickey Mouse!!!!

See you soon,

, mom to Makenna age 6!

[Guest guest]

Jeanie we are going to Disney on Monday and Tuesday after the

conference- that is the plan for now anyway.

>

> Way to go Makenna; and mom and dad of course.

>

> When are you going to Disney?

>

> Jeanie Colp

> mom to MacKenzie 9 CHARGE

>

>

>