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!

Wednesday, May 26, 2010

MISSING TOOTH FOUND!! (Living with Spinal Muscular Atrophy)

I can't believe it! Last night we found this missing tooth that has been missing for THREE weeks! Jenna woke up one day w/ her tooth missing. We searched high and low, in her bed, on the floor, in her bipap mask, mouth, everywhere! It was missing. So, we assumed she swallowed it. Well last night while I was doing her cough treatment, it came flying out of her mouth! THREE WEEKS LATER! It must have been lodged somewhere! Surprisingly it didn't come out over the weekend when we were doing respiratory treatments every 2-4 hours. Now it makes you wonder... could that be the reason for all the extra secretions and getting sick? Who knows, but I'm sure she is feeling better now that it isn't stuck anymore!

Monday, May 24, 2010

A Little Better

Jenna is doing a little better. Yesterday she was able to come off bipap for awhile and did fine. She still need respiratory treatments every 4 hours though, but definately better. Today is the first day she has gotten out of bed. I think she really enjoyed that bath! We are hoping each day is a little better and she can start sitting up and get back to school again real soon.

Saturday, May 22, 2010

My poor baby is sick!

Jenna has been sick and having issues w/ her secretions and choking over the last few days. Her heart rate was averaging 160 and she does not want to come off bipap. Last night she was also tugging quite a bit to breathe when we needed to take it off for coughs. Things started turning yucky and we started Zithromax. She is requiring respiratory treatments every 2-4 hours and we have added Xopenex to help break up the junk in the lungs. This morning her wheezing was so loud you could hear it w/o the stethoscope! Thankfully that has gotten better throughout the day w/ all the treatments. She is still on bipap though.