Taysen has been doing really well lately... he has had 2 colds so far this year and was out of school for about a week with each one. Thankfully we have been able to manage his illnesses at home thanks to the greatest machine ever invented ---->the cough assist. Hate that he has to use it, but boy is that big heavy thing a life saver-- quite literally.
He is also utilizing his bipap more often when sick and really does not complain about it anymore. Today I picked him up a couple hours early from school because the nurse called saying she sent home a classmate with a 102 fever. I have been really impressed with everyone at Isom. The nurse had never heard of SMA or CAH before Taye started school and she has educated herself and truly understands why illnesses can be so critical for Taysen.
I have had a great time helping out in the classroom at school. It has been so much fun watching Taysen with all the kids. He truly, truly enjoys school and i can see that he brings much joy to everyone at school just like he does in our home.
River has been counting down the days until he gets to go to school next year. Until he remembered that he has to get "school shots" before going to school. He has now decided that he "doesn't really want to go to school anymore" because he "doesn't really like shots and is just fine without them" !
January has been a difficult month in the SMA community. Eight children have passed away in one month. Talk about a sickening feeling, to log onto facebook and read info like this... literally breaks my heart. Taysen will be 7 in July which makes 5 years since he was diagnosed. At that time, there was a lot of stuff written about a viable treatment option within 5 years. That 5 years will be here soon and while there is still no cure, there is lots of good stuff going on in labs, really excited and hopeful.
every buck helps. truly. 2 foundations we support which donate 100% proceeds to treatment and cure based therapies are http://www.gwendolynstrong.com/ and http://www.sophiascure.com/ should you feel lead to support these charities.