Two Steps Forward and One Step Back - Living with Spinal Muscular Atrophy

The wonderful spring weather did not last long. It was so cold today and a huge let down. Luckily, no snow as of yet but up north they did get some.

Lizzy just started going back out side in her power chair and just when we thought we could start going on walks again it and it  gets cold.  YUCK!! Any way , her and I did other things and she helped me cook chili.   She has been doing really well but.... we need to get her TLSO worked on because it just does not fit her quite right. So, back to Peoria in the VERY near future to get it fixed. I am sure Lizzy will tell Tony he messed up giving her white AFOS and not her normal leopard print. She is SO MAD about that.

Paul was having fits over the basket ball game today and Lizzy point blank told him If he did not calm down he was going to have a heart attack!!' I love it!! She is quite aware of EVERYTHING that goes on . Her favorite thing to say is 'OH my gosh!! You won't believe this"'

My diet is failing........ugh I am so good then...... I back slide.  Eating right is so expensive. I need a trainer and diet food delivered to my door every day to keep me from back sliding. Oh gee, we can afford that one alright. In my wildest dreams any way. Hey ,Donald Trump or Oprah  are you listening? (Yeah like that will ever happen) We need a full size handicapped accessible van &house before I would ever think about myself. My needs are nothing compared to our needs for Lizzy. She is happy and doing well so that is the main thing but to make life just a bit easier would be a dream come true. She is such a great kid I would give her the world if I could.

Paul is doing great in school( top of his class)but STRESS from possibly no income from unemployment has attacked his constant awake hours. He was on Spring break but....he did not get a break from worrying. He has not gotten a check for two weeks. He is told by others that their unemployment has run out. Then, he was told by the local unemployment office that they extended it .......... what to do? So, far NOTHING. Now the reality of losing the house if he does not get an extension has us both very upset. So, when I am this stressed I do not sleep and he is hard TO BE AROUND. I research when I don't sleep and he sleeps more. Makes not sense does it?  Two steps forward one step back.

I believe it all will work out some way some how. It always does.

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