The Spinal Muscular Atrophy family has lost a few of their warriors in the last month; one that everyone has been thriving off of.. Little Miss Avery! Avery has done a magnificant job about getting numerous amounts of people to be aware of SMA. Also getting people to donate generously torwards Dr. Kasper's Gene Therapy- and there is a man/women that will match every donation up to 500,000$! Amazing right? Little Miss Avery passed away right before hitting her 6 month birthday; but has that stopped her? NOPE! She is STILL touching people; and getting people to understand Spinal Muscular Atrophy!
There is also a petition going around about SMA Gene testing as well! Wow; so much has happened. and soo much has come about in such a small amount of time; BUT..lets not let the publicity die down so quickly!
MJ Queen (another one of our lovely SMA Warriors) Has put together 8 videos! YES 8! Of every child she knows (Or that she has been tagged in) to help show people "The Faces of SMA" and let me tell you..These Videos are AMAZING! All of these children are absolutly precious! I'll post some. One of her videos is actually I believe being watched by Ellen! (And something about if we get enough likes on the video she'll show it on her show?!!) Now tell me that wouldn't be just something super!!!!
Now that I've updated about our SMA life; here is an update on Alannah!
Alannah is about to reach her 17 month birthday! and let me tell you; terrible 2's could not come any quicker...haha. She's a grumpy little sassy butt! Probably doesn't help she's cutting 11 teeth all at once..talk about pain? She has also went thru another growth spurt! Grr; she's going to be taller than me before I know it! Last time she was measured she was 41". Well I'm 5'1! you do the math... :)
Alannah is also back on antibiotics for a possible respiratory gunk; (Rather be safe than sorry; had a nasty yellowish color-but could have been due to improper treatments-idiot nurse) Alannah has also mastered the "setting off her pulsox"...But only likes to do it in the middle of the night...GRR!!
We're starting to have a problem keeping weight on this child though...She isn't doing anything to burn the weight; so I'm not too sure where it's going, unless she's growing too fast to keep up with her weight...And instead of sleeping all day; I can keep her up until midnight; and this kid still wants to get up at the crack of dawn...She's going to drive me crazy with this new sleeping schedule! On the Plus side--She's blowing kisses now...I love it !!
Rest in Paradise little Angels of SMA
here's a few videos from Miss MJ Queen!!
^^^Here's the one Ellen's been keeping her eye on
^^^^Alannah's in this one
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