DR.Schroth was just in Ohio teaching others about care of SMA. The video she made on this link below is the best. Newly diagnosed families and their doctors NEED to watch this video. It could save your child's life . It was made Feb 4 . Also ,to the hospitals that do not know SMA Protocol NEED this info . DR.Schroth in our opinion is the best doctor in the WORLD for SMA.
There is no excuses anymore for the ignorance of doctors about SMA because of the internet. Please watch this http://nch.dataserv.tv/NCH/
Elizabeth is doing well. She was sick until a week ago bounced back but now she claims the internet until I get a new wireless router that will work so we can ALL be on the internet. She had a melt down again today over me getting online and I told her she had to share. I had to do some extra coughs and suction over it but she is fine now. She I think learned throwing a fit to get her way is not going to always work with me. To care for a child with SMA can be a challenging life but to have a child with SMA and a "spoiled brat" is unacceptable. They need to discipline too. Not that we do not give Elizabeth a lot of what she wants but there is a point where you have to teach them what is acceptable behavior and unacceptable. She is a miracle child yes but she is very smart also and knows how to manipulate you when she wants something her way. I am the one that does most all her care so I let her know I was the one calling the shots. It worked.
My friend Katie saved me with my dieting. You know I have not found one diet salad dressing that did not taste horrible until now. She told me about the one I am using now and love. Its "Newman's Own Light lime Vingaigrette". It is so good. Who would of ever thought that lime and vinegar could taste so good. I think you need to like lime to like it but its heavenly..... so good. I have a salad for lunch with a few pecans, rasberries, tomatoes and different organic lettuce and oh my it is so good. I am been pretty good this past week. I kind of avoid the scales but I feel like I am losing. I need to get my Mayo clinic DVDs out and exercise.Self Discipline.. where is mine? I have to do this for me. I make boutique hair bows when I am not doing something for Elizabeth so exercising is something I have to make myself do. I have gotten really good it as of the late making bows. I started awhile back and I have done many. Mine are unique as they are my own design. Nothing like any one elses out here. I combine different basic bows with frills and little other things that I make my own. I need to slow down doing this and work on this old fat body. I loved going to curves but I had to quit due to Moms working out after they were caring for their sick children and Paul getting laid off. IF it would stop snowing here walking would be an option.
Tomorrow is Aleena Miller's 6th Birthday!!!! Happy birthday Aleena. Six years old. We met you when you were just a baby. We been though a lot together the Millers and us. Amazing isnt it. They have done so much for the study at Stanford by raising money to help fund the study, and getting AWARENESS OF SMA out there doing a conference in their area and continually helping families with information on care of these beautiful children. Stephanie Aleena's Mom had this video made . Aleena and Lizzy are the "Shining Stars" in it. Here is the link to the video Hope and Light Foundation.
Many prayers out there to all the sick kids out there. Many prayers to the families that have lost a child to this terrible disease.
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
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