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, November 25, 2009

The Ear Saga (Living w/ Spinal Muscular Atrophy)

Well Jenna saw the pediatrician on Sat and started Zithromax for bilateral ear infections. On Sunday she went to Urgent care due to drainage and swelling of her ear. She received antibiotic/steroid drops to help. And the Tuesday went to the ENT as her ear was blocked and the drops were no longer going in. We will have to go back in 2 weeks for a follow-up to make sure things are healing properly. Unfortunately, she may be on the path to a set of tubes. The ENT told us the last time that if she gets another ear infection within a few months then she would be a candidate. If that's the case, we will wait until after respiratory season before doing anything.

She is feeling a little better and slept all night last night, which is great - for her and me! :)




* To learn more on Spinal Muscular Atrophy, please visit www.fsma.org

Sunday, November 22, 2009

Not a good weekend (Living with Spinal Muscular Atrophy)

Not a good weekend. Jenna started not feeling well Friday afternoon w/ a high heart rate and a little extra secretions. She didn't sleep well at all that night and woke up in the morning w/ a temp. It ended up climbing up to 103 so we took her to the pediatrician. She had bilateral ear infections and one eardrum had a small tear. So off we went w/ the Zithromax script hoping by today she would be fealing a little better. Well not so much. She started getting drainage from her one ear and it started to swell pretty bad. The poor girl kept crying "my ear hurts really, really bad!" So we took a trip to Urgent Care. There was so much drainage that they couldn't see what her ear drum looked like so they gave her a script for an antibiotic/steroid drop. I hope betweent the two, she is feeling better REAL soon and will get more than 3 hours of sleep per night. We are all very tired.

To learn more on Spinal Muscular Atrophy, please visit www.fsma.org

Tuesday, November 17, 2009

Busy, Busy, Busy! (Living with Spinal Muscular Atrophy)

Jenna went for her first series of the Synagis (RSV) Vaccines yesterday. Because she is such a big girl now, she requires 3 of them each month until April. She knew EXACTLY what was up too. I made a left into the pediatrician's parking lot and she started whining. Smart cookie! She did great though, once the shots are done she stops crying.

Well that's all the appointments this week. Next week is GI... just in time for Thanksgiving. Speaking of which, Jenna and I were playing "What are you thankful for?" the other day. Here are her top 3: 1) Her Barbie, 2) Daddy, and 3) Belle. And today it was different when doing an assignment w/ her Homebound Teacher. Today she was thankful for Dragon Tales. Too cute!


For more information on Spinal Muscular Atrophy, please visit www.fsma.org

Friday, November 13, 2009

Lots going on (Living with Spinal Muscular Atrophy)

Jenna is feeling much better! As usual, her sickness took 14 days to get over. Something you and I get only takes a week or so to get rid of, but with Jenna... it takes a good 2 weeks. Yesterday was the first full day off of Benedryl and she did well. She even got up in her stander for 30 minutes so you know she is feeling much better.

She also went for her H1N1 vaccine yesterday. She is such a tough cookie. She cried as she was getting the injection, but once it was over she was done.

We also found out yesterday that Jenna is approved for the RSV Synagis again this year! This is GREAT news! She will receive the 1st series of injections on Monday.

Schooling is going well. Her Special Ed teacher made her an awesome board to use use at home during video schooling. It correlates with what they are doing in class and I think she LOVES being her own "busy bee" everyday!



For more information on Spinal Muscular Atrophy, please visit http://www.fsma.org/

Tuesday, November 3, 2009

Happy 5th Birthday! (Living w/ Spinal Muscular Atrophy)

Yesterday was Jenna's birthday! It was a beautiful day outside at 55 and sunny. You can't ask for more than that here in Novemeber. Too bad Jenna couldn't go outside to enjoy it as she has been sick all weekend. She is feeling better, but still has a lot of secretions. But... all in all, she had a good day! Grandma called last night to say Happy Birthday and she kept repeating over and over, "I'm 5!"

Happy 5th Birthday Jenna! We are so proud of you and all of your accomplishments. Each day, week, month, year you continue to amaze us!