Jenna dancing with Daddy (Living with Spinal Muscular Atrophy)

Jenna dancing with her Daddy to Beauty & The Beast

Halloween (Living w/ Spinal Muscular Atrophy)

Jenna had a GREAT Halloween this year!  She totally made up for being in the hospital last year!  She was dressed up as Ariel and participated in the Eastern Hills Mall "Mall-O-Ween" on Thursday. LOVED it!  Then on All Hallow's Eve she went Trick-or-Treating for the first time EVER!  She did great.  We were really surprised on how far she went (pretty much Grandma's entire street).  And of course she totally enjoyed the Twizzler she sucked on afterward.  Then on Haloween, she went to school for the Halloween Parade and Party.  Again... LOVED it!  So here are so pics from her great Halloween week!

    

    

 

  

Shadow the Caterpillar (Living w/ Spinal Muscular Atrophy)

JJ's Journey
Spinal Muscular Atrophy (SMA)

Doing Better (Living w/ Spinal Muscular Atrophy)

Well Jenna is doing better.  She isn't 100% yet, but much better than a week ago.  We thought she may have ended up in the hospital, but the little fighter pulled through again.  She still needs extra coughs and suctioning, but at least it isn't every 10 minutes before.  And I am happy to report that I "slept" in my own bed last night! That is a first in probably 10+ days.  She still hasn't sat up yet.  I am hoping to try that tomorrow.  If no sitting up, then no school on Monday. :(

Speaking of school, Jenna is doing really well this year.  She always loves to go and do all the projects and see friends, etc.  She absolutely LOVES it!   She also has a great team this year too.  She did very well on her first spelling test and only got one wrong!  Little Miss Smarty Pants can't wait to get back to school!



SMA, Spinal Muscular Atophy,

Still fighting the sickness (Living with Spinal Muscular Atrophy - SMA)

Jenna is doing better than Sunday evening, but she is still fighting this nasty sickness.  The junk has moved from the right lung to the left lung.  We are still hearing a lot of crackling and squeeky sounds. She is also still having problems sleeping on her sides as her o2 drops to about 90% with bipap on.  Lying on her side awake they fall to about 95%.  Today will be day 5 on Zithromax and I was hoping by now she would be doing better than she is.  But....  as we have seen in the past, it usually takes Jenna two weeks to recover from an illness.  This is only the end of Week 1.