"I hope the procedure went well. No my daughter weaned to just sleeping with bi-pap during the 11 days in the hospital. When we got home we put it on her for a while, but gradually we quit doing it and haven't used it for the last…"
"My daughter is a "typical" type I (not strong, not weak, typical). We did the G-tube surgery and Nissen at 6 months. She was fully anesthetized and surgery lasted several hours. She was extubated to bi-PAP and spent 11…"
If you own a shower trolley, please share your experience with use. Our 4 yr old, type 1 is 30 lbs and we're thinking of ways to bath her safely without breaking our backs. We're planning to use the shower trolley to transfer her from bed and roll into the shower to bath her in this.Thanks.See More
"I'm a speech therapist and would suggest you try each of them at least 1 time before you decide. Prentke Romich also makes the Accent 1200 with NuEye that is a great device and can be paid for my Medicaid and/or insurance"
"I think I'd lean toward the Tobii, because it would work great for school, too. The ideal thing would be to have a speech pathologist get one for her to try out first to make sure it would work for her. If you can contact the…"
We're looking into getting Amanda a speech device and she'll be 5 years old in a few months and a type 1. Has anyone trialed or done a comparison between Dynavox Maestro and Tobii EyeMobile with Microsoft Surface tablet? Please share your experience and research. I'm leaning towards the Tobii EyeMobile with tablet because it's compact, portable, and a computer so use won't be limited to AAC apps but other productivity and commonly used software like MS Word, Excel and such.Here are some…See More
"The majority of true type 1s have had G-tube surgery. It is scary, it was several years ago now, but I still remember how scared I was. The only reason you need full anesthesia is if you are also having a nissen procedure done. It is recommended, as…"
"Hi Aamena, my daughter,Lior, is a strong type 1, now 5 year old. She did a g-tube 2 years ago. She did it under bipap and very easy anesthesia. We insisted on a good children anesthesiologist that would be very gentle with the drugs and…"
The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA. Please visit this link to see the latest list of resources available to the SMA community.