As planned, Monday we admitted Ally at Childrens Memorial to transition her to a new breathing machine (trilogy) for her to use at night, for breaks and when she is sick. The goal is 3 nights and get home as quick as possible before catching any germs. So far things are going VERY smoothly and the hospital staff has worked very hard to make this transition go easily with the least amount of stress as possible. I’ve been staying glued to the room away from the germs.
So far, Ally seems to be doing well on the Trilogy and we will be doing her sleep study tonight to see what settings should be tweaked. She is getting two machines, so they want her to spend time on both. Hopefully we will be heading home on Thursday.
Favor – if you are on facebook, PLEASE PLEASE PLEASE take a moment to vote in Chase’s Community Giving to help find a Cure for SMA. Details below…
Subject: PLEASE VOTE FOR SMA RESEARCH TODAY!
SMA research has an incredible opportunity, but WE NEED YOUR HELP! It’s fast, free + could change the lives of the thousands of children!!
The Chase Giving Facebook race is a close one. The Gwendolyn Strong Foundation is neck in neck for a spot in the top six — and a chance for a monetary prize. WE NEED YOUR HELP! Because you can only vote for GSF ONE TIME — every single vote is critical!!!
We need you to do the following TODAY:
VOTE: http://www.facebook.com/l/dcc92;VoteForeSMA.com — if you can’t get through, please keep trying.
POST the link to your wall — if already did this, please do it again.
POST the video to your wall — http://www.facebook.com/l/dcc92;www.youtube.com/gsfoundation.
EMAIL the voting link + the video to at least 20 people — http://www.facebook.com/l/dcc92;VoteForSMA.com + http://www.facebook.com/l/dcc92;www.youtube.com/gsfoundation.
TWEET the voting + video link — http://www.facebook.com/l/dcc92;VoteForSMA.com + http://www.facebook.com/l/dcc92;www.youtube.com/gsfoundation.
This is an incredible movement. There is enormous passion behind GSF and getting SMA the funding it needs. Thousands of people have come together to fight this cruel disease and give children dying of SMA the future they so deserve.
Please keep rallying for us + for SMA — voting ends Friday. Be part of a MIRACLE today!
SMA FACTS:
SMA kills more children than any other inherited disease.
SMA is degenerative + terminal.
1 in 40 people unknowingly carry the SMA gene; few have any family history.
There is currently NO treatment or cure, but there is HOPE!
The NIH named SMA as the “disease closest to treatment” — if given funding.
Angel Ally Blog - SMA Type 1 
Glad it’s going well!!!