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Ritu (Kavya's mom) replied to MJ & Brenda of B4SMA's discussion Faces of SMA Video"Hey MJ and Brenda i must tell you that the FACES OF SMA videos you've released till now are simply fantastic..."
Jennifer Lee replied to DeNica's discussion Pregnant now--due in June. Any protocols for history of SMA to fight disease ASAP?!?!"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…"
Patrice and Ian Fletcher posted a videoJoshua at the Florida Aquarium
- created at http://animoto.com
Amy Christopher replied to Stephenie Och's discussion Nightime Issues"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…"
Rashad Bakker left a comment for Lisa Oltmans"thanks to you Lisa,may be he have dry eyes or not,i don't know!"
Lisa Oltmans replied to Stephenie Och's discussion Nightime Issues"Just checked the Adaptations web and they have a pager as well. If you don't need a switch its pretty reasonable: http://www.adaptivation.com/product_detail.php?ID=86 I like that the receiver can be clipped to your belt and set…"
Lisa Oltmans replied to Stephenie Och's discussion Nightime Issues"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. …"
Stephenie Och posted a discussionNightime Issues
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
Julia Schwarz replied to DeNica's discussion Pregnant now--due in June. Any protocols for history of SMA to fight disease ASAP?!?!"Hi DeNica,
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…"
Michele (Maxwell's Mommy) replied to Jessica Schaefer's discussion Getting Pregnant Again"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…"
courtney davidopoulos left a comment for Traci High"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…"
Traci High replied to Brad (Shira SMA Type 1 Age 7)'s discussion WHO USES THE TRILOGY VENTILATOR FOR NIV?"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…"
Forum
Faces of SMA Video
Started by MJ & Brenda of B4SMA in Other. Last reply by Ritu (Kavya's mom) on Tuesday. 1 Reply 0 Likes
Pregnant now--due in June. Any protocols for history of SMA to fight disease ASAP?!?!
Started by DeNica in Other. Last reply by Jennifer Lee on Monday. 6 Replies 0 Likes
Nightime Issues
Started by Stephenie Och in Other. Last reply by Amy Christopher May 15. 3 Replies 0 Likes
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