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!

Saturday, August 11, 2012

WAY overdue update!

OH MY!  I cannot believe it has been 8 months since I last updated!  Crazy how busy life becomes.  There has been so much going on this year, not sure where to start.  I guess I'll begin with a synopsis of whatever I can remember.  :)

February... the family took a great vacation to Disney World.  The girls had a great time and I couldn't believe how accommodating the parks were with Jenna.  They truly treated her like a princess.


Then unfortunately she ended up sick afterward.  She was home for a week then in the hospital for another with Human Metapneumovirus (HMP)... RSV's ugly twin sister!  Thankfully she got through it without intubation.

Other than that, I believe (knock on wood) that is the only sickness she has had this year.

In May.. Paul, Renee and Debbie ran the Buffalo Half Marathon in honor of SMA.  They raised approx $3,500 for the Gwendolyn Strong Foundation and Gene Therapy.

Right now we are dealing with some GI and GT (feeding tube) issues.  Her feeds keep backing up and we are working on getting that figured out.

Next week she has an appointment in Rochester to see the Orthopedic out there.  Her scoliosis has worsened to 45 degrees and we need to look into our surgery options.

We had our 9th Annual SMArt Walk for A Cure last week and had a fantastic turnout.  The weather was great and we raised $65,000 for research and family services!

Ok... now hopefully I can start updating in a more timely manner!
:)

Tuesday, November 1, 2011

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!


    


    

 


  

Saturday, October 1, 2011

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,