Wishes for Scarlett

[...] and again I was told no. This was so frustrating because I know better. I know from other SMA families and our Madison doctors how critical good respiratory care is for Scarlett. It is what will [...]

[...] most days and I still break down often facing the reality of our situation. I know from other SMA families, that SMA consumes your life all day every day. There is no escape and there never will be. [...]

[...] SMA families are some of the most generous and caring families I have ever met. Anytime I post a question [...]

[...] in June for the annual FSMA conference. It was a wonderful week full of time with other SMA families, time with leading researchers, and expert doctors. We have gone two years now and, after the [...]

[...] in SMA despite the heartache. Today, I am so very proud to say that Scarlett took her first dance class at Bataille Academie of Danse. I met Deedee, the owner, 15 years ago when her oldest son was in [...]

[...] worst case – we will bring it to your home! I’d love to see Scarlett in a dance class! Time will tell, of course. This weekend also brought the start of music therapy for [...]

[...] studio isn’t accessible so her little manual chair makes it possible for her to attend dance class. The most important effect of her manual chair though, is the strength it has given her [...]

[...] Yesterday, Scarlett and I went to the Rehab Institute of Chicago to try out a power wheelchair and to finally order one. It is a big step for us because we still don’t have a vehicle to [...]

[...] that Scarlett was accepted to attend! What will be hard, though, is she can’t take her power wheelchair with until we have a new car and lift. I really want her to have the full camp experience [...]

[...] my older kids can run ahead without too much hassle. It is also flat making it perfect for a power wheelchair.  This year, though, Lake St. was extra special. My friend had alerted the street about [...]

[...] existence. The second year was a year of determination. We raised money for a car and power wheelchair, got our medical team in place, and really began to push Scarlett forward. This past year [...]

[...] curtains I had saved. It is a priceless treasure. The room is calm and beautiful despite the medical equipment and subtle reminders of Scarlett’s care. To have a peaceful respite is so important [...]

[...] we’ve had a few colds, but nothing we couldn’t handle at home with the medical equipment we have. We’ve been blessed in this area. Scarlett has been able to grow in [...]

[...] can be a silent killer. As the week went on, she slowly got better and with our arsenal of medical equipment, we avoided a hospital stay. Wednesday, Scarlett and I drove to Madison for an overnight [...]

[...] hinders and often seems to cause regression in SMA kids. It has also been observed that animal protein and high fat causes the same issues. We switched to whole milk one month ago. I have spent [...]

[...] house. It is the rest of the day that is a struggle. Scarlett is now a vegan. That means no animal protein, dairy, or eggs. To make it even harder,  she can’t have soy protein or soy flour due [...]

[...] , we were eating a dinner that Scarlett couldn’t eat because it contained dairy, eggs, and animal protein, which we avoid for Scarlett, so she was able to select whatever she wanted. She chose a [...]

[...] strong in one family, is not the same as strong in another. We talk strength when we discuss our SMA kids. “He’s a strong Type 1 or a weak Type 2.” In SMA I am learning that there is [...]

[...] we had yet to see any respiratory therapists to even administer chest PT which is critical for SMA kids. I literally had to badger our nurse every half hour to get her to stay on top of the order for [...]

[...] is based on the observations that dairy greatly hinders and often seems to cause regression in SMA kids. It has also been observed that animal protein and high fat causes the same issues. We switched [...]

[...] losing her. At only 4 months into our diagnosis we made the leap of faith to switch to the Amino Acid Diet, or AA diet, as it is called in the SMA world. It is not just a diet, but also a total [...]

[...] me, I was lectured on my diet choice for Scarlett and how they didn’t agree with the Amino Acid diet I have chosen to try. Finally, after much go around, the nurses agreed to put in an NG tube [...]

[...] reading about a diet that many SMA families use so last weekend, I resumed my research. The Amino Acid diet is based on the observations that dairy greatly hinders and often seems to cause regression [...]

[...] are pouring into this foundation to fund the most promising gene therapy ever known in the SMA community. If you feel inclined, follow this linkhttp://www.the200forsma.com/ and make a donation in [...]

[...] , and emails helping me along the way with what to ask the doctors and what we needed. The SMA community is so supportive of each other. What I learned is that each one of them has had to fight their [...]

[...] that silent show of support yet, as it spreads across the world and reaches someone new, the SMA community feels like we are one step closer to reaching our Everest and that makes me feel like I can [...]