Tuesday, August 13, 2013

Loving Life and Enjoying Each Day- Living with Spinal Muscular Atrophy




Lizzy is doing well. She is happy, healthy and a little beauty.She will be 10 in Sept!! Can you believe it?
She has a new dog named Wrigley. He is a Golden Doodle and 8 months old. Lizzy's Uncle Jeff and Aunt Dawn got him from a couple in Wisconsin for her.  They rescued him .She is so excited and loves him already. He is house broken and a very good dog. He fits in our family really well. We have been walking with him every night. We were in line for a service dog and we still might but, at this time the cost of driving back and forth 60 miles a way for training is not something we are able to do.  The big Moose jumps in bed with me every morning licks my face , licks Lizzy and when I get up to do Lizzy's treatment he sleeps in my bed until I get Lizzy out of the tub. He is hilarious. He looks like Chewboka off StarWars!! I mean in his face he really does!!  I think our lives will never be the same or boring! He is fitting right in.

We have stayed home for the first time in probably 10 years for the summer. Just walking almost every night, enjoying people coming over to see us,cleaning and just hanging out here. Its been a great summer. Its been peaceful. We walk at night most nights. Its cooler and the sun is not in our eyes. We walk all over our downtown. Caitlyn and Corbyn love to walk with us and so does Lizzy's friend Karly. Imagine kids loving to walk 20 blocks. I think that is great habit to get kids into. That way as adults they will like to walk. Well, a few nights since we have gotten Wrigley I have basically ran!! Imagine me at age 55 running!! I love it.

Christen has dropped about 40 pounds but me on the other hand maybe 5-10 pounds maybe more. I am not losing a lot. Of all places I have lost it my legs! I have chicken legs any way and a belly. I look like an egg with legs!!  I find out at the doctor on Monday how much I have lost. I am not fast enough for me. I am not getting any younger. In twenty five years I will be 80!!  I am having such a hard time getting weight off. My nurse practitioner Lisa thinks its because I only sleep 5 hours a night. Maybe, so but... I never had this hard of time losing before. My thyroid is under active but not enough for meds. I watch what I eat. I eats lots of fruit and salads. I just wish it was not so darn hard. Those darn steroids I was on for years for my back caused me more damage than good.

We do have a trip to Madison coming up the end of the month and it will be great to get a way!
Lizzy has been doing home work as much as possible online. Its hard to believe its August . Its been such a great summer it will be hard to jump back into fall. Then, winter ugh....... we have been out so much in the fresh air that just thinking about going on Winter locked down makes us sad. I am going to try to get Lizzy out as many days as possible even during the fall/winter months.
Keep us in your prayers. We have been facing some difficult times that I will post on how and what I am doing to get us through it. Pray it works. I prayed about it. I have get all my info together and faxed by tomorrow (I hope) things will be so much better for us very soon! I pray these people can help us and they have funding left. Its a gov. program.


Hope you all enjoyed your summer as we have. Stay tuned for some updates in the next few weeks after our trip to UW.
God Bless you all!!

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