"We found out at 5weeks by testing after birth. Once we got the results we made the appointment withit a neurologist and the pulmologist. we got a perscription for pulseox suction and cough machines then and he wanted to wait for the…"
"We have a special button that an OT or PT brought out to the house. It rings into our room. I have heard of others using a battery operated door bell. No wiring needed. I think if our ever fails us, that's what…"
"Hi Stephenie - There is a product sold by Adaptivation that would allow your child to hit a button and play a message recorded into it. We used one like it with a switch so Shane could yell for us. Just record a loud shout. …"
My 15 year old son with SMA II requires a lot of positioning at night. We use a baby monitor that is less than ideal for hearing him. He began using bi-pap at night March 2nd and I have been sleeping on his floor since then because he is even harder to hear when he calls for me. I am wondering if anyone uses any kind of a call button similar to that in the hospital or anything else that is working. Thanks you so much in advance for your suggestions. I think it would be nice to start…See More
I have done a lot of research on this, actually, because I am due with #2 in October. Our plan is to test at 32 weeks (which I guess you are already?!), because at that point, if anything goes wrong, they will just deliver the baby. My…"
"Hi Jessica. I am so sorry for your loss. I can only imagine your pain. My son has type II and is 3 years old. I have a niece that is also a type II and is 20 years old. I was 39 when I had Maxwell. We planned…"
"traci, Dr. bach described epap as "trying to exhale through a wind tunnel." he doesnt want kids to have to work to exhale. matt had a tiny chest and deep pectus. he has been on agressive settings of 27/2 for a year and both those have…"
"Okay I know I'm a little late to this party. We got Max a trilogy about a year ago, but we only use it for travel as it has battery power which our other one does not. What are the other advantages? I am interested in Courtney's reply…"
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.