SMAspace

A Spinal Muscular Atrophy (SMA) network provided by Eminnea, Inc.

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Groups

 

Latest Activity

We are planning to be there as well. My kids are Madison & Ella. We will plan to bring some type of chocolate dessert.
16 minutes ago
Sarah, How are you humidifying the air? Dr. Schroth mentioned this to us when we were there, but we decided on the AVAPS because of the built in humidifier and the fact that we do not have room for an additional humidifier on the stroller or powerch…
43 minutes ago
The SLP we had through Early Intervention was useless, she was supposed to come out quarterly evaluate Aiden and make suggestions. She only came one time in 2 yrs, she kept saying she was overworked and he was a priority since he would never talk. I…
1 hour ago
If you are going to the gathering on Sunday can you please go to the discussion section uner Valentines Day and let everyone know? We need a head count for food and Valentines. Thanks!
1 hour ago
I email Richard from Neuralstem Inc to see if there is a way we can get updates on the trial. Keep your fingers crossed! This could be huge for us. Thank you SOOO much Sam for finding this article. You rock.
1 hour ago
I definitely want her to have help communicating. Ava is 18 months old, but the therapist said she was at a 2-year-olds level with her speech. I still kept asking for some kind of communication device, and she kept saying "I have been doing this for…
1 hour ago
Just an editorial comment but the Trilogy also has another benefit besides being small and fantastic. Due to it's primary purpose as a vent, certain medicaid waivers like the "vent waiver" make this the ideal choice. My insurance provider looked the…
1 hour ago
There is a trach/ventilator group, but I thought I would add a group for users of the NIV protocol using bipap or ventilator!
1 hour ago
This forum will be a great place for people to give/receive support in using the DynaVox EyeMax Communication Device.
1 hour ago
2 hours ago
Julie (Jenica's Mom) added 2 photos
3 hours ago
OK I know this is an older discussion but Ayden was trached in October and we have never had to bag him...knock on wood...but didn't know there was a filter...or that you could get new ones every so often...!?!?! HOw often should you get new filters…
3 hours ago

Blog Posts

Families of SMA

Informative video from Dr. Mary Schroth

Posted by Families of SMA on February 9, 2010 at 4:49pm

Barbara Zahn

Waterway babies neck ring... not using it right?

Posted by Barbara Zahn on February 8, 2010 at 9:27pm — 2 Comments

Families of SMA

Newly Diagnosed Care Packages

Posted by Families of SMA on February 8, 2010 at 4:10pm — 1 Comment

Susan McNabb

Emily

Posted by Susan McNabb on February 6, 2010 at 5:16pm — 11 Comments

Forum

LJ

Mystery Mark/Rash on Knee? 3 Replies

Started by LJ. Last reply by Danielle (Karah's Mom) 13 hours ago.

Karen Reilly

MMR shot for Type 1? 3 Replies

Started by Karen Reilly. Last reply by Dawn Daws 15 hours ago.

Christie Tolson ( Holly's Mom)

Type 1 feedings after age 1? 4 Replies

Started by Christie Tolson ( Holly's Mom). Last reply by Brad (Shira SMA Type 1 4yrs old) 1 day ago.

Nana Barb

Hip Surgery 4 Replies

Started by Nana Barb. Last reply by Nana Barb 1 day ago.

Jennifer (Addy's Mom)

BBG Nasal Aspirators, Foam Tape and Seating 5 Replies

Started by Jennifer (Addy's Mom). Last reply by Jennifer (Addy's Mom) Feb 7.

Debby St. Onge

Jaeco slings info 4 Replies

Started by Debby St. Onge. Last reply by Victoria Strong Feb 7.

Julie (Jenica's Mom)

Medical Deductions on your taxes

Started by Julie (Jenica's Mom) Feb 7.

Catherine Gaynor

Elevator in the home 5 Replies

Started by Catherine Gaynor. Last reply by Shannon Feb 7.

Diana Lee

MRSA symptoms 8 Replies

Started by Diana Lee. Last reply by Jennifer Goodson Feb 5.

Meri Phelps

Use of pillows and mattresses in children with type 1 SMA 8 Replies

Started by Meri Phelps. Last reply by Meri Phelps Feb 5.

 
 

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