Out of the mouths of babes (Living w/ Spinal Muscular Atrophy)

Jenna and Kali are playing w/ snails. Jenna tells Kali "Go get a carrot." Kali says, "No. Mommy didn't say we could." Jenna replies, "I'll pay you!"

Kids are too much!

7th Annual SMArt Walk for a Cure! (Living w/ Spinal Muscular Atrophy)

Please sponsor me for the 7th Annual SMArt Walk for A Cure! There are many exciting things happening in the SMA world including promising Stem Cell and Gene Therapies. Together we will find a cure!

WNY FSMA Donation Page

7th Annual SMArt Walk For A Cure
Saturday, August 7, 2010
9:00 am - 1:00 pm
Beaver Island State Park, Shelters 4A & B
Grand Island, NY

Please join us!

Summer Services (Living with Spinal Muscular Atrophy)

Things have been great! Jenna finished up school and just loved it, especially the field trip to the zoo! She is liking the fact that her sisters are home w/ her despite summer services starting up. Speaking of which, she loves her new OT and PT. They are really great with her. She is defiantely showing improvements in her biceps and left arm control, she is doing fantastic. She started using a touch pad mouse on the computer and she is doing fantastic! A couple years ago we purchased the Cirque Easy Cat mouse, but she didn't seem to have enough strength or control. Then we purchased the Ergonomic Touchpad and she did better, but it just didn't work the best. Well now that she has become a little stronger and has a great concept of it. We started using it again about a week ago and she did well. Then the other day during an OT session we put her wrist splint on and supported her arm and she went to town! She did FANTASTIC and LOVED it! We were SO proud of her! Then we switched her back to her Eye Gaze system and she did well with the blink version. Then asked to go back to the touchpad mouse. I would like her to be able to use both, but also give her the choice on which one she perfers and when. This is so exciting!