Happy Fourth Birthday, little Owl!! Much love to you!
Happy Birthday Getty! I hope you are enjoying growing up. I know I found it exciting!
Thank you all so much! Sorry I haven’t been here to read these new posts sooner.
She had a wonderful birthday and is doing great.
Rule #1 for SMA: protect the lungs. She has great respiratory care and support. We work hard daily to keep her clear of junk, and it pays off. She caught one cold in summer 2011. It lasted 10 days. Beyond that, never sick.
She has maximized nutrition with an amino acid based formula. This allows her to keep her limited energy for things other than digestion. She has perfect lab work.
She has her power chair and is starting to tool around. She has only a left turn button at this point, but at least she can have fun rotating until she gets a forward button, then a right turn button.
She’s getting in-home schooling and care. She’s nonverbal but is showing she’s smart for a 4 year old, using flash cards and following instruction with her eyes and hoots. She uses Skype via VGo robot to join her classmates for reading time. They all love her and say hello, and she loves seeing them.
Most of all, she has loving people around her all the time, and loving people rooting her on from around the world. She’s always so happy.
Thank you all for the well-wishes and support.
Thank you so much for the update! It sounds like things are going pretty well for you all!
So happy to hear she had a wonderful birthday.
Uh-oh! 
Best wishes to you all, just been a reader on this thread, but happy belated birthday Getty!
She definitely has enough confidence and sass to drive off exploring on her own if given the chance. Gotta keep an eye on that girl.
she is gonna be zipping along owning the streets! i’m so glad y’all prevailed and she has her wheels.
Hi Bearflag, Have you seen this?
SMA: ISIS-SMNRx Shows Benefit in Infants, Children
*Treatment with the experimental drug ISIS-SMNRx in two phase 2 studies in infants and children with spinal muscular atrophy (SMA) has been found to result in functional improvement, encouraging its developer to pursue phase 3 studies in 2014.
A phase 2 trial of ISIS-SMNRx in infants with type 1 SMA has yielded encouraging results, with several of the babies showing improvement on standardized tests of muscle strength and function. The infant study remains open to new participants.
And, a phase 2 trial of ISIS-SMNRx in children 2-15 years old with type 2 and type 3 SMA, now closed to new participants, likewise showed increases in muscle function scores, as well as evidence that the drug was biologically active in spinal fluid.
Biotechnology company Isis Pharmaceuticals, based in Carlsbad, Calif., announced the encouraging results at the 66th annual meeting of the American Academy of Neurology held April 26-May 3, 2014, and in an April 29, 2014, press release. The release provides details of the two studies and future plans for development of ISIS-SMNRx.*
Yes, thank you. Researchers are toiling away!
Thank goodness. When I saw the thread had been bumped, I feared the worst.
Getty is doing well. Completed preschool. Learning on her power wheelchair. Getting in-home services. About to get a new stroller. We took her to see a play yesterday.
Happy girl!
Wonderful news!
I follow Getty on Facebook. A wonderful little girl. You should be so very proud.
A very close relative of mine has been personally involved in a lot of the current groundbreaking research on SMA. To hear him talk, they should have it completely cured in a few years. They’ve already done it in mice. I don’t know what effect, if anything, that will have on your daughter, but progress is happening.
I’m thrilled to hear that Getty is doing so well! 4 years goes by so fast…
Wow. I remember when you started this thread, and she has already finished preschool? Dang! Anyway, thanks for the update.
My heart skipped a beat when I saw this thread had been resurrected. So glad to know GettyOwl is doing good. Completed preschool, WOW!
This is amazing. Go, Getty!
Holy cow, this continues to be a wonderful thread.
This news is seriously awesome sauce! Yay, miss Getty!! You go, girl!