Never Give Up! (JJ's Journey - Spinal Muscular Atrophy Type 1)

I saw a video today that really touched me and I had to send it along to others. Now I am posting it here because it is people like him, and my little Jenna, that show the world that no matter what hand you have been dealt, you should never give up.






* For more info on Spinal Muscular Atrophy, please visit fsma.org

1st cold of the season (Jenna - Spinal Muscular Atrophy - Type 1)

Ok it's official. Jenna has her 1st cold of the season. And she was miserable today! The cold started yesterday with a stuffy nose and sinus issues. As of right now, it is (thankfully) only in her head and not in her chest. It's definately what has been going around the last couple weeks because she sounds the same as everyone else who had it: stuffy nose, crackly voice, etc. So hopefully she will feel better and can get back to her normal self real soon!

Our thoughts and prayers go out to MJ who was admitted to the hospital this week. Feel better real soon MJ!




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

Open House (Jenna - Spinal Muscular Atrophy Type 1)

Jenna's All About Me picture from Open House.

Jenna's picture from Open House

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FWD:Anthony john is here. 7lbs 1oz. 21 inches

Jenna's new baby cousin Anthony John!

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Another Angel

A sad day today as I just learned that another SMA child has become an angel. Little Olivia was only 3 1/2 yrs old. It is truly unfair that this terrible disease has to take our precious children. My thoughts and prayers go out to the family.

A trip to Opthamology - Spinal Muscular Atrophy 1

Well the other day didn't turn out so busy after all. Jenna's appointment w/ the orthotist was cancelled. We are hoping to get another appointment next week. But.... yesterday made up for it! It was a non-stop day. Jenna had an Opthamology appointment to get an eye exam. She was unable to be tested the traditional way so we went this route. She did a great job and they used pictures instead of letters and numbers. And guess what? Yep.... Jenna is most likely getting glasses! She is borderline w/ an astigmatism. The doctor asked her if she wanted glasses now or to wait a year. At the office she said she wanted to wait a year, but at home she said she wanted them now. We will probably get them now to get her use to them and she will be re-tested next July.

Thoughts and prayers going out to little Miss Stella as she is currently in the hospital. Get well soon sweetie!



Spinal Muscular Atrophy - Type 1

Another busy day!

Another busy day around here for Miss Jenna. She has school this morning and is very excited about going to the Library again today. She LOVES books and is in awe over it. Plus, she gets to take 2 books home this time.

After school, she has an appointment to have an arm trough made for her to use w/ her power chair. This should help quite a bit w/ keeping her arm in place while driving. Right now, one small bump in the ground and her arm falls out of place and she cannot get it back by herself. Speaking of her power chair... she seems to be getting a little lazy w/ it lately. I think it's because everyone is trying to learn it and they do it instead of making her do it. We just have to start making her do it again. And I'm sure she'll get back into "wanting" to do it too.

Great week!

Jenna had a great week in Kindergarten. She was homebound for Mon and Fri, but Tues, Wed, Thur she attended. She was pretty tired by Thursday. It was probably a blessing in disguise for her to attend only 3 days per week in the beginning.

All of her therapies started this past week too. She did well w/ everyone considering her whole team is new. They are working on getting her some adapted scissors, adapted writing/drawing aid, she will have a Special Tomato for classroom and a special table that tilts like an easel so she can see the paper she is working on. We are all hoping to get her up and running on her "computer" (Eye Tech System). The system has SO much to offer her. It just takes time to program everything.

Jenna IS really loving school, the whole experience. The kids, classroom, activities, teachers, therapists, and even the bus. She tells me "I go school NOW!" even when it's 8 pm. Silly girl!

Jenna had a GREAT 1st day at school Thursday! She was SO excited to get on the bus and made a couple new friends in her class. From what I hear, she was wide-eyed when they took a walk down to the library! We all know how much she loves to read books! Due to our nursing situation, she had homebound instruction yesterday. One of her special ed teachers came to the home for 1.5 hours and she did great. They worked on calendar, her name, sequencing, etc. We are also hoping to start using her computer more. There is so much potential on there for her, it would be great to get her using it. The web cam/satellite school is still being worked on. We are hoping it will be all set to go in the next couple of weeks. That should be nice too, so she can still interact and see the kids from her class when at home. Mya & Kali had a great 1st day too! They like their teachers and are excited about the new school year.

Thoughts and prayers going out to all the sick kiddos! Way too much sickness for so early in the year!

Jenna's New Website!

Welcome to Jenna's new website! I am hoping to keep her updates more current by using this site as I can have access from anywhere!

Jenna's old site: www.our-sma-angels.com/jenna