SMA Type1 families
For all those families that have type1 children.
SMAspace
helping us help each other
Notes
New Year / New Look
Created by Nate Lee Jan 1, 2012 at 1:36am. Last updated by Nate Lee Jan 4.
Latest Activity
sheonad macfarlane shared their discussion on Twitter
Gina Ruocco replied to Kinley Kirshner's discussion 'We're expecting our thrid baby!' in the group Future Children (PGD, Adoption, etc.)
Congratulations!!!!! That is awesome!!!! It's funny, my sister-in-law's sisters are twins named Hope and Faith. Wishing you all the best with all of your little blessings.
Gina Ruocco left a comment for Tracey Thompson
Tracy,
Lol, disregard my comment about the book, sorry!
Gina Ruocco left a comment for Tracey Thompson
Hey Tracey,
Just saw your comment, contact me about anything you need, I am here to help if I can. My son Stephen passed away in May 2010. I would love to have him remembered in your memorial section of your book,
Thank you,
Gina
sheonad macfarlane replied to sheonad macfarlane's discussion 'Potty training' in the group SMA Type II
thank you stacie
my health visitors etc are not helpful at all and i think that it must take a mum who has been in that situation to really understand
i have been looking at a she-wee (yes seriously) to see if that was possible - much the same you…
Stacie Edwards replied to sheonad macfarlane's discussion 'Potty training' in the group SMA Type II
Hey! For our boys (ages 8 and 5) they do still wear diapers - but mostly just for protection for the wheelchairs, and for times when we're out in public and bathroom situations are iffy. For #2 we do move them to the potty seat we…
Potty training
HiEilidh is 3 - her birthday was yesterday! where has the time gone? - and is doing all of her poos in the potty but i'm struggling with the logistics of pees...Do you toliet them regularly to prevent accidents?How do you hold them and pull down their pants at the same time?Do you use training pants or normal pants - training ones just seems so much more cumbersome?Do you wear waterproofs so that they don't pee everywhere?Do your little ones sit on the toilet (with a toiletchair)? or do they…See More
sheonad macfarlane added a discussion to the group SMA Type II
Status posted by Michael C. Casten
Kristin Banjany (Nathan's Mom) replied to Kristin Banjany (Nathan's Mom)'s discussion 'NJ Medicaid CRPD Waiver' in the group NJ Families
Good luck! For Nathan it's secondary insurance and now with this HMO nonsense, idk what's what. I don't think they would... It used to just be Medicaid, but as of 10/1 they transitioned the rest of the waiver cases to HMOs so we went…
Deirdre Medina's Mom replied to Kristin Banjany (Nathan's Mom)'s discussion 'NJ Medicaid CRPD Waiver' in the group NJ Families
Wow... Can you believe our case manager is an useless you-know-what? Our luck... Mr. Alvarez wouldnt return phone calls for more than a year, got in contact with us after by chance we got a visit for EI services for Dee's sister and turns out…
Cali Mazzellas replied to Tina Krajewski's discussion '?? Multi-vitamins for older Type 1 kiddos??' in the group Nutrition
We use Phlexy-Vits (5ml powder-paste per day)...for Courtney, type 1, age 15. Her GI MD advised to use this rather than the others. Age may be the reason ?? Not sure...suggest you ask about it.
Farah (Maliyah's mom) commented on Debby St. Onge's blog post 'Do You See the Angels?'
This is beautiful and brought tears to my eyes. Thank you ...
Kristin Banjany (Nathan's Mom) replied to Kristin Banjany (Nathan's Mom)'s discussion 'NJ Medicaid CRPD Waiver' in the group NJ Families
Hey Vivian,
The waiver is a complicated beast... It's a DDS waiver, managed my Medicaid and now the HMOs are involved. I'd bet if you call ANYONE they will have no clue what you are talking about. Does Dee Dee have a county SCHS Case…
Lizzys Nina/Jeanna left a comment for marissa montague
info on aa diet for SMA
aadietinfo.com
Lizzys Nina/Jeanna commented on Nate Lee's group 'Nutrition'
Great accurate AA DIET INFO GO TO
aadietinfo.com
Deirdre Medina's Mom replied to Kristin Banjany (Nathan's Mom)'s discussion 'NJ Medicaid CRPD Waiver' in the group NJ Families
How do you get in the waiver? Yes, I missed this. And the HMO we got is making our life miserable. Just today at the IEP reunion they questioned why we didnt apply for the waiver since we need specialized services from NY. The Medicaid nurse that…
Deirdre Medina's Mom replied to Marcy Fantel's discussion 'Does anyone have experience building a home addition and submitting expenses to the Catastrophic Illness Fund?' in the group NJ Families
From what I understand you pay for everything, THEN you submit the receipt to them so they cover what they promised... Just contact them to get the facts on what exactly will they reimburse you... so you don't get bad surprises.
Did you also…
Links
SMA Surveys/Studies:
- Dr. Bach's Cardiac and Pulmonary Complications in SMA study
- Nutrition Survey
- Reproductive Decision Making Survey
SMA Organizations:
- FightSMA
- The Gwendolyn Strong Foundation
- Eminnea, Inc.
- Families of SMA
- SMA Coalition
- SMASupport
- SMA Medical Supply
- CAHF
- B4SMA
- MDA Clinics
- Stop SMA
- Hope and Light Foundation
- SMA Angels Charity
- Kyle and Friends
- SMAespanol
- Sophia's Cure Foundation
- Cole's Quilts
- Miracle For Madison & Friends
- SMA Registrey
- InsideSMA
- Candles for SMA
- Hope for SMA
- Couture to Cure SMA
SMA Education:
- Dr. John Bach
- SMA Breathing Basics Brochure
- Consensus Statement for Standard of Care in SMA
- Family Guide to Consensus Statement
- SMA Education Day
- SMA sites tagged in Delicious.com
- Mobile and Backup Power Options
Other Helpful Links:
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Birthdays Tomorrow
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Is there a special program here in Texas to allow us to keep money saved for a down payment for a house?
Started by Diana S. de Trevino in General. Last reply by Diana S. de Trevino on Wednesday. 2 Replies 0 Likes
vomiting
Started by Stephanie Varney in General. Last reply by Catherine Alexander on Monday. 1 Reply 0 Likes
Autonomic Nervous Symptoms in SMA Questionnaire
Started by MJ & Brenda of B4SMA in Research. Last reply by MJ & Brenda of B4SMA Jan 20. 6 Replies 0 Likes
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© 2012 Created by Nate Lee.
