[tri-med] Re: Hope gained her wings

Dear Meghan,
I'm so sorry to hear about Hope's passing, but I'm thankful that you 
were able to see her at peace.  She really did well for all the 
hopelessness the doctors predicted.  I'll be praying for you and your 
husband during this time, and may your fight for pediatric hospice be 
successful--you certainly have the ammunition for it.

Loren (wife to Kraig, mom to Keren, T18, 15 mo.  :) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075

On Wednesday, January 21, 2004, at 11:58 AM, Megoa22@xxxxxxx wrote:

> Last Wednesday, January 14th Hope passed away at 8:00 in the morning.  
> She
> was in the hospital for pain management.  Her little body just 
> couldn't handle
> it anymore,  The seizures were getting worse even when we went up in 
> the meds,
> she was refluxing even on continuous feeds - it just wasn't fair to 
> her to
> keep her with us.  We worked with a palliative care/hopsice dr at the 
> hospital
> who was wonderful and we started her on morphine regularly.  for the 
> first time
> in a long time I finally saw my little girl at peace.  I spent the 
> night in
> the hospital with her and held in in my bed.  My husband came over and 
> held her
> and we knew she was struggling and that it was close.  We just didn't 
> expect
> it to be so soon.  A few hours later she passed away.  I am struggling 
> but I
> know that she is comfortable,  The last two months were horrible for 
> her and she
> just seemed to be in constant pain.  I am so grateful for this website 
> and
> all the support, advice and information that was provided to me.  I am 
> going to
> continue to fight for pediatric hospice care in DC since it doesn't 
> exsist and
> fight our insurnace - ironically the day Hope died we recieved a 
> response
> from them denying hospice care - saying she wasn't terminally ill!
> Thank you all
> Meghan (Mom to Hope, Full T13 6/18/03-1/14/04)
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>



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

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