Friday, January 1, 2010

A Punch in the stomach

Shortly after Noah got home from the hospital I came across a website that calculated the life expectancy of a special needs children. Noah is a in the 5th Group. The 5th group is a child who doesn't walk,crawl, creep or scoot and doesn't feed himself and is fed by a G-tube. Noah life expectancy according to this chart is 7-14yrs. Did you hear that? 7-14yrs!!!!!!! I felt like I was punched in the stomach. Noah is going to be 12 the 28th of this month....... I feel like I'm running out of time with him. With Noah just getting out of the hospital for pneumonia (first time ever)
I was wondering if this was going to be a start of a new trend with him. Having to be in the hospital every time he gets sick. It scares me to death. I'm not ready to let him go yet. I'm tears again just thinking about it. I fell so helpless. That's why I'm desperately trying to find something to help Noah. Scott and I really feel ABR is our answer. The weekend Noah was in the hospital was the time we were to be in Chicago for our ABR training. Unfortunately even if Noah was well enough to go we wouldn't had gone anyway. Because we just didn't have the money. The next time we can go is February 18th. How I wish we could were able to go. I keep saying that if this is what God wants it will happen. I'm hoping to have a small benefit for Noah on Sunday Feb. 7th.

This is the ABR machine we would love to be able to afford. Noah could do therapy all night long and be able to make faster progress. I'm still working on trying to get a grant to help us out. Why does things have to be so hard? I just want to be able to provide a better quality of life for Noah. Now I feel like I'm also trying to save his life as well. I've said this before..... why doesn't special needs children come with the means to be able to provide for them?

Gavin (ABR trainer) and Noah in Montreal.

I pray that 2010 will be a better year for us.

Noah loves a therapy that he can fall asleep

and he still gets stronger

I'm not ready to let this smile go.



Katy said...

Do be sure to post on your Facebook if you have a benefit. . . I'd like to send a little something.

Like you, I SO believe in this therapy and really feel that it will add years to our children's lives.

ABC Trio said...

Noah is such a handsome fella. I'm so sorry you came across that life expectancy website.....

May you find peace and strength so you can enjoy each and every day with your precious child. I worry about the future of my boy all the time, but it is all in God's hands. One day at a time!

Best of luck with your upcoming benefit. If only money grew on trees.....(If that were the case I could really put my Horticulture degree to good use! lol.)