[tri-wings] Re: Just an Update

Hi,
 
First off, thanks to those of you who thought of us around Analee's angel  
and birthdates.  It's been way too long since our girls have gone and the  days 
seem to go by so quickly sometimes.  
We've been fortunate to have gotten letters from three of the people who  
received organs from Sky. I can't help but think about them as we work our way  
through these summer months.
I was thrilled to have met a Mom at Gillette a few weeks ago.  I was  sitting 
in the waiting area and looked up to see a face so similar to my  Analee....I 
asked the Mom, "Trisomy-18?"  She looked surprised and told me  that her 
daughter does have T-18.  We talked for a bit and it turned out  that she had 
met 
Analee and her cousin Morgan years ago in Albert Lea, MN.   I couldn't take my 
eyes off of her daughter.  Mary looked so similar to  Analee that they could 
easily have been sisters. Mary is 20 but still has a  beautiful baby face, and 
a smile that's impossible to describe. She looked  so much like a slightly 
older, slightly taller, version of Analee and when she  giggled I just lost it. 
Even her voice was that same, familiar little person  voice that I miss so 
much.
Meeting Mary and her mother came at a tough time for us as we struggle  
through the reality that our Ian has a  terminal, degenerative neurologic 
illness.  
We've been running  him through tests for the past 9 months to find out why 
he started to lose  skills that he had.  The DR.s now believe that he has 
either Nieman-Pick,  or Ataxia Telangictasia.  Regardless, he is progressing at 
an 
accelerated  rate due to his having suffered brain trauma as an infant. The 
toughest part is  watching him decline while he knows that he can't do the 
things that he could a  few months ago.  
He gets mad and sad when he sees his walker, trike, and even toys and books  
that he can't use anymore.  He keeps his hands fisted much of the time and  
has lost his ability to use his sign language very effectively. He still uses  
6-8 words but he was up past 60 words and would use sentences all the time to  
tell us things. He no longer has any verbal words and drools constantly due to 
 his inability to swallow. We have to be careful even when we allow him to 
taste  things.
We have met with a palliative/hospice care Dr. who will set us up with  
antibiotics and Morphine for when things get worse.  We also had volunteers  
here 
this morning from Make-A-Wish to talk about what Ian might like as he moves  
through this part of his life. Somehow the whole thing seems unreal.  
We always assumed that Ian and Sky would outlive us and we worried about  
what might happen to them when we're gone. Now, Tony is my healthiest and he 
was  
always the one I feared would die first.  Last week our neurologist  
suggested that we contact Make-A-Wish for Logan as well. She thinks that 
because  he 
is so small and frail that he may not live a very long life.  I'm just  not 
ready to deal with the thought of losing him too.  I do have a huge  fear that 
we'll lose two kids again, not just Ian.
Ian and Tony are so close that I don't know how Tony will get through  
another big loss. He was so, so sad when the girls died that I didn't know if  
he'd 
give up and chose to go with them....
India is pretty oblivious to the other kids. I'm grateful for that at this  
point.
We also sent our homestudy off again. I'm not sure why I think we can take  
on another child right now, but the workers called us on this one. We'll see if 
 he's a good match for our crazy household and wait to see what, if anything  
comes of it.
Sorry about the extremely long post, but I'm not sure what part to  delete....
 
 
 
Nancy,
Mom  to Tony (9), Ian (5), India (3), Logan (3),
And Angels Sky (8-26-06), and  Analee T-18 (7-4-06).


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