Monday, July 2, 2012

Moving on - Living with Spinal Muscular Atrophy

My sister Mindy went back home on Saturday with her kids Ali and Adam. Mindy was here for a few months taking care of her Dad for his last days on Hospice. That was a great thing she did for him. It was her Dad and mom was not able to take care of him anymore. Mom has been in the nursing home for a over a year now. Mom is doing very well. Mindy would pick her up to stay at the trailer every other day.  She spoiled her. The last week before my step father passed mom stayed the whole week at the trailer because the flu was going around the nursing home. All my siblings made it home to see my stepfather before he passed.
My girls and I cleaned the trailer after Mindy left with the help from Ruby and Terry( Aunt and Uncle) Saturday night. Terry fixed some things while we all cleaned. Then, Jess and Christen went over there yesterday shampooed carpets and cleaned some more. Tomorrow,  Dana is going to paint the bathroom, back hallway and kitchen. I will go over again tonight and do piddly things and make sure it looks good. We think we have sold the trailer already. I mean $ 6,499.00 for a home with low utilities is great deal these days. Its not a bad home . All appliances stay. Stove, fridge and washer dryer.  Its a clean well maintained trailer court. The money from the sale of trailer goes on my step father's funeral cost. Sad, but it will help with those expenses.
We went to the FSMA conference in Minnesota and went to a friends house for three days after. We were gone a week. Caitlyn went with us. It was great to see so many families and talk to newly diagnosed families. Mary Bodzo and I tried with few other moms to explain what we do with diet with the nutritionists that deal with a lot of SMA. Mary Bodzo is so passionate about the AA diet and such a wonderful woman!!   I do not think they listened to us but....breast milk is on list for fats that kids with SMA that work well!! So.. maybe I did not get through to them at the conference but..helping families with diets and introducing breast milk had made a big impact with type 1s. Love seeing our great friends and meeting new ones.









Then we stayed with some great friends and had a fantastic time. We stayed with The Draz Family and Nana  Barb. We did all kinds of things and had a great time. Lizzy wants to move to Minnesota!! 







We made some great memories last week, got to see some great friends and spend quality time together.  I actually got to explain why I do what I do for Lizzy several times to many newly diagnosed. Christen learned how to adapt a toy. Lizzy got to see her friends and have a fantastic time. Caitlyn got to experience some wondeful things.  We were around some amazing people at the conference. Stayed with a great family friends after wards and did some really fun things. Then, we came home had to say our good byes to my sister and family. First time ,in two years we have been able to do things with friends. It was a much needed vacation after so much we have gone through the past few year.
A wonderful lady got us a handicapped van to rent when we thought our trip was not going to happen. We had caring wonderful friends help us with the whole trip. "Never under estimate the power of  friendship!"
I will never forget how we were able to do this for Lizzy . She had the best time ever. 
Thank you my friends for being in our lives!! 


"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth 

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