[tri-med] feeding tube question from a former list member

Hi all!

I'm sure many of you remember Mimi and her daughter Tierney (T18) who 
were on the list a year or so ago.  They had to take time off due to 
extra stresses (Mimi's son Keegan was diagnosed with leukemia).  
Anyway, I just got this email from her and thought I'd pass it on to 
you.  I'll forward any responses to the list on to Mimi.

(Brief family update:  Keegan is trucking along--I believe he's in 
remission right now, but it's one of those things they have to keep 
watching.  Tierney is 2 1/2 now and just beautiful!  The rest of the 
family is well, but they were all displaced over the summer as major 
construction was going on down the street from their house, and they 
were concerned about Keegan lowered immune system.  They hope to be 
back in their home by December.)

Here's the note:

Begin forwarded message:
> Date: Wed Oct 26, 2005  2:59:30 PM America/Detroit
> Subject: feeding tube
>
> Hi Loren,
>
> Hope you, Kraig and the kids are doing well. In spite of the drought, 
> we are having a colorful Fall.
>
> We are doing alright here. Can NOT wait to get back in to our house.
>
> Tierney is doing fine but I am, at long last, going forward with a G 
> tube for her.  She is not gaining weight, in spite of the fact that I 
> spend over 4 hours a day feeding her. She loses ground when she is 
> sick--the stress of getting food in to her her is just so high. I am 
> still pumping breastmilk for her and I have lately been trying to 
> transition her on to some pediasure mixed with my breastmilk. She is 
> very resistant, and I am just not sure how long I can go on pumping 
> for 2 hours a day to meet her needs. Honestly, I am not--she is 
> gaining and losing the same ounce month after month.
>
> Long story short, I was hoping you or perhaps someone on the list 
> could give me the lowdown on feeding tube options so I can go in 
> educated. I have heard that the Mickey is low profile and pretty easy 
> to use. Tierney is active and opinionated enough that I think she will 
> pull at something that sticks up much.
>
> I have some experience with G tubes as I place them in dogs and 
> cats--but ours are designed to be temporary and somewhat cumbersome to 
> use.
>
> Also--what tests did Keren have to have done prior to her G tube 
> placement? I hate tests.
>
> Thanks a million Loren. This has been a long time coming and I am 
> anxious to make Tierney's feedings more successful and less stressful.
>
> Love, Mimi
>

Loren (wife to Kraig, mom to Keren Elyse, T18, 3 years old! (9/27/02), 
and Clarissa Joanne (7/17/05) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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