Latest Activity

Kristen Dougan replied to Kristen Dougan's discussion Mini one feeding tube leaking excessively
"Thanks Lisa. That has some things we haven't tried."
20 hours ago
Lisa Oltmans replied to Kristen Dougan's discussion Mini one feeding tube leaking excessively
"Hi Kristen - I went to the oley.org webpage to see if there were tips and they have a power point and an article that contain lot of info.  http://www.oley.org/lifeline/Tips_for_Dealing_with_Skin_and_Stoma_Issues.html   Hope they have…"
23 hours ago
Courtney Ceccacci Roeckel is now a member of SMAspace
yesterday
Shelley Byrd replied to shahar(Lior's dad,2.5 yr Girl)'s discussion VoiceIt - translating non comprehensible speech
"That looks amazing! We would love that! "
yesterday
Shelley Byrd liked Kristen Dougan's discussion Mini one feeding tube leaking excessively
yesterday
Stephanie Reese is now a member of SMAspace
Sunday
Kristen Dougan posted a discussion

Mini one feeding tube leaking excessively

I've had my feeding tube/fundo wrap for 10 years now. I'm 15, almost 16. I have sma type 2. I had severe scoliosis when the dr first put the feeding tube in. Since then, I've had multiple back surgeries, including a spinal fusion. My back is a lot straighter. For about a year now, my feeding tube has been leaking from the site. Sometimes it leaks my formula, but most of the time, it leaks pure stomach acid. The acid is literally eating my skin around the stem of the tube. I saw my GI dr about…See More
Saturday
shahar(Lior's dad,2.5 yr Girl) replied to shahar(Lior's dad,2.5 yr Girl)'s discussion VoiceIt - translating non comprehensible speech
"Hi all, I visited a very interesting startup few days ago - called voiceitt. they have a few interesting patents which allow translating a very un comprehensible speech. We saw a few demos and when we left there I thought that this is a must for…"
Saturday
shahar(Lior's dad,2.5 yr Girl) posted a discussion
Saturday
Lisa Oltmans replied to wen's discussion Wheelchair head mount for type 1, 5 yr old
"Try a Whitmyer head support with the forehead strap.   http://www.gtkrehab.com.au/SiteFiles/gtkrehabcomau/pdfs/12467_Whitmyer%20Headrests.pdf"
Friday
Lisa Oltmans posted a blog post

Fear Not

At any difficult time of my life I've always flipped open my bible to a random page for guidance. There was a time when I was afraid to take my son out on outtings especially alone without nurses to help me.  I want to share a verse that guided me when my son with type 1 was 14 years old, he wanted me to take him on a car ride with just the two of us in 2003.  The verse that opened for me was “Strengthen the weak hands, and make firm the feeble knees. Say to those who are of a fearful heart, Be…See More
Friday
Annette Reed replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Yes thats the one I thought you were referring to."
Jul 24
tj bennett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
Jul 24
wen posted a discussion

Wheelchair head mount for type 1, 5 yr old

Hello,We have a Zippie tilt in space wheelchair and tried a few head mounts but so far none work.  Looking for suggestions.Thanks.wenSee More
Jul 24
Lisa Oltmans replied to Katharina Dinter's discussion Mobile/ceiling lift and transfer help
"Hi Katharina - my son had no head control and we used an Arjo Trixie Lift.  It has slings that support your head. It is also portable so if you travel you take it with you.  I loved it and it saved my back. ;-) Blessings to you. Lisa"
Jul 23
Sam Bonsett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Hi Annette, I'm not sure why it suddenly went private but it was about 2 sisters 1 was type 2 and the other was type 3. They looked early teens. I will do some more research and post the facility and Doctors name."
Jul 21
michelle worrellia replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"ha ha Vincent you supported stem cell and Hans - what you raised like over 3ooK bucks right? "
Jul 21
Annette Reed replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"I think now its the Isis SMNRx! There was a video posted a few days ago about a girl with type 3 out of Kansas MO who is in the ISIS clinical trial: New Drug for SMA shows Profound effects in clinical trial. It has now gone private!"
Jul 21
Annette Reed replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Hi Sam! Can you give more details about this video? The link takes me to a private video."
Jul 21
Sam Bonsett replied to Jen (Boro) Peters's discussion HOW CLOSE ARE WE TO A TREATMENT OR CURE???/
"Does anyone know what trial this is?  I'm with Brad 5 more years... https://m.youtube.com/watch?v=n3r5pPfE0QQ&feature=youtu.be "
Jul 21

Forum

Mini one feeding tube leaking excessively

Started by Kristen Dougan in Nutrition. Last reply by Kristen Dougan 20 hours ago. 2 Replies

VoiceIt - translating non comprehensible speech

Started by shahar(Lior's dad,2.5 yr Girl) in Technology. Last reply by Shelley Byrd yesterday. 2 Replies

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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.

 
 
 

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