Welcome to JJ's Journey!

A day in the life of Jenna! Jenna has Spinal Muscular Atrophy (SMA) Type 1. SMA is severe neuromuscluar disorder that effects the muscles that help her move, eat, and breathe. Currently there is no treatment or cure. For more information on SMA, please visit www.fsma.org or visit www.our-sma-angels.com/jenna!

Monday, September 26, 2011

JJ Update 9/26/11 (Living w/ Spinal Muscular Atrophy)

Well I don't want to speak too soon, but Jenna seems a bit better today.  Her new bed is coming in very handy w/ it's trendelenberg feature.  It really helped move some junk up so we could get it out.  So the 1 year fight to obtain this bed was well worth it!

She still seems to have junk in the right lung and her sats still drop a bit while laying on her left.  But it is better than last night.  Last night she was dipping to 90% (on bipap) while sleeping and laying on either side.  Today she has come off bipap for an hour twice and doing better.  Today is Day 3 on Zithromax (Day 6 of being sick) so hopefully we are now on the upswing.

Thank you to all who have kept her in your thoughts and prayers!

2 comments:

Sky said...

glad to read she is doing better, we will keep her in our prayers!!!!

Maria B. said...

I didn't realize she's been sick. I hope she continues to feel better. And how gorgeous is her hair! Whether curly or straight.