Its Really Summer!! Living with Spinal Muscular Atrophy Type 1

Its been awhile since I posted. It has been a very busy last few months. So much has been going on! Lizzy has been healthy!!!She has been growing like crazy!!
School is out!!

Lizzy has had several appointments. One recent appt was for her to get a new chair. She has to have a new power chair. She has grown so tall that her chair is too small. Just down her ramp her head bounces so bad. So, Lizzy had a wheel chair eval and the perfect chair was selected for her. So, hopefully she gets approved for the chair.
We are going to the FSMA Conference in Minnesota and we can not wait. Some fantastic friends are making this possible for us. We have not traveled for a long while besides office visits to Madison. So, this is a much needed break. Praying all goes well here so we are able to relax see our best friends in the whole wide world and let Lizzy have her time to her friends also. Then, we are going to extend our stay and stay with our very good friends.

My stepfather is on HOSPICE and dying. This has caused a lot of questions for Lizzy. I answer honestly. She as a child has never experienced a death of a person she knows so well. We take her to see him. He has COPD and still living at home. My younger sister Mindy has been here with him since April. She has been caring for him and doing something I could not do. He is her Dad but watching your father die in front of your eyes is the worst thing a person could go through. I have been crying almost every day watching this man that was in my life for since I was in the 5th grade. It is hard for me. My mom is in the nursing home and has been staying at the trailer once or twice a week to spend some time with him. Mindy is doing a great job but she left her family to come here. That takes a lot. My heart seems to be breaking watching him die. Then, I had to help plan his and my mom's funerals. The hardest thing I have ever had to do in my life.  Its knocked the wind out of me .

We have been taking Lizzy uptown lately in her chair. Helps with her boredom and keeps her mind stimulated at looking in the stores.  Its her community and she needs to familiar herself with the surroundings. Then, she can tell us where she wants to go. The weather has been fantastic, No humidity and its been in the 80s until last few days and it hit the 90s. yesterday. Much better than last few years weather!

The Friday before Mother's Day I got this huge box in from FED EX. I was like huh? what is this? I opened it and I felt love pour out of the package. I was sent a flower box from some very caring awesome friends. It was the most fantastic present!! This flower box was made for Lizzy . Its something we can do together. Lizzy has a chore now. She has to water the flowers every night.
She is learning responsibility.
Missing our California friends badly right now!! This weather reminds me of California!! Some day we will go back.

So much to tell but I will leave you for now.
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth
http://www.aadietinfo.com/guideline-document/