The Winter Bubble - Living with Spinal Muscular Atrophy

We have been living in our "Winter Bubble" since Christmas and it seems likes its been forever! Lizzy and I were in a discussion just the other day and we both decided we need to escape,  soon!! Thank goodness for the internet! That is our only link to the out-side world it seems. Elizabeth is doing fantastic. You can barely see her scar and is gaining weight again.

I have got a lot of cleaning done and plan on getting carpets shampooed this weekend.
Being organized is some thing that makes my life so much easier!!

Paul and Christen had been sick for 3 weeks and coughing last 4 weeks. Lizzy got the sick before Christmas and she got me sick the week of Christmas as I said it my last post.  Her and I got over it a lot quicker than anyone else. I ran around trying to keep everything sanitized and finally convinced Paul he needed to let me change his bedding. Men are so stubborn sometimes!! 

Lizzy is doing well. Just trying to get her up in mornings have not been easy with the colder weather. She says" Nina.. please just let me just lay here and watch TV. " Then , in the tub"Nina just let me soak" She is too funny how she tries to get out doing stretches and treatments still and she is 9 1/4 years old now. She has been doing treatments and stretches since she was an infant and still hates them!!I just keep telling her as I do every day " I only do these treatments and stretches because I love you and I want you to be strong." 

Lizzy's home-bound teacher Becky had to quit due to a change in her husband's schedule. It was very sad to have to lose a person so close to her but.. we have to think positive. Things change and we have to adjust. Lizzy was upset over the holiday vacation about the change but.. I think she is going to be okay. We have talked about it and she knows its no ones fault. She met her new teacher last Monday. Lizzy says. "She is okay"  Hopefully, it will all work out well. Lizzy is a pretty smart kid so I am sure she will do fine. Becky was a special person for all she did for Lizzy.We will always have a special place in our hearts for her. She will be missed. 

I have decided the situation with the "disgruntled soon to be relative" is something I am done letting it bother me. I have come the conclusion "Life is too short to live with such emotional roller coasters" You like us or you do not. We are honest people and we stand up for what we think is right. Family and friends are very important to us  I do what I have to do to keep positive and just pray about it. I went through  a lot emotionally this past Spring /Summer with family things and I refuse to put myself through any more unnecessary drama. I am so DONE. I do not have the time of patience for such nonsense in my life.
I am trying to get myself in "exercise mode"  Its not easy to get self disciplined!


Lizzy does really well with dealing with things going on around her. She has an opinion or makes a joke about things that shock me to death. 

Paul is feeling better from the illness but he has lost weight again. He has been going to diabetic counselor for a few months now and  is still trying to get his sugar levels under control. Keep him in your prayers.

Lizzy had a play date with her cousin today Taylor. They did some crafts and have been getting along really well.

     

Hope you are staying well!!
Adding some great links to some ideas for around the house helpers http://www.onegoodthingbyjillee.com. Great ideas!! They work too!!

Just remember this!!

 Thank you to all the people in our lives.
"We believe in circles because we live with one!!"
www.our-sma-angels.com/elizabeth