Tuesday, April 6, 2010

" I love myself!" - Living with Spinal Muscular Atrophy

We had a quiet Easter . Lizzy got a Easter Basket from her Grandpa Aaron, the Easter Bunny(her mom and Dad) , a few little things from Papa and me.  I made a  ham, loaded baked potato salad and baked beans. I usually go over board cooking but... this year I was not feeling the best. My hands have been getting worse in the mornings , my back is bothering me and I have felt fatigued since Lizzy was sick. Not sure why but I think because my back is bothering me I have another "Bakers cyst " behind my knee. Not looking for sympathy here I am just trying to figure out what is going on with me. ( getting to be a whiner here)  It sucks to get old. We watched the movie "On the blind side" great movie by the way on Easter. So, it was a great quiet day.

Lizzy was on her computer the other day and out of the blue she rolled herself to look at me and says "  I love myself!" She then says "Is that okay Nina?"  Where did that came from?  " Yes, Lizzy that is okay. You can love yourself and you are supposed to love yourself"  She has said this a few times the last few days. If anyone does anything to change that I will commit bodily harm to them. We must be doing something right for her to say something like that. I encourage her to have goals and to reach them. I always say "Lizzy you can do anything you want to do some way some how" in her ear after she has fallen alseep EVERY night.

We had a busy day today. We went to the Ortho and saw Tony in Peoria to have him fix Elizabeth's brace(TLSO) a few adjustments and she is good to go now.  Lizzy drove around his parking lot today in awesome weather to make sure it worked for her. Tony likes Lizzy's AFOs that I used leopard material and Mod Podge to make them work for her. Tony forgot and made them white plastic and Lizzy was not happy. After consulting a very awesome crafty mom , she told me to try mod podge and fabric. It took a few hours to do and worked. Lizzy is happy now!!  I will take pics in the next few days.

We saw Linda tonight for MF release and she is still quite impressed on how much more Lizzy is moving. That new herb/spice we are using from Pure India in helping so much with inflammation.  She is moving so much more. She has been on it a very short time it is working so quickly!! I am taking it now since it works for her.
We are excited to get Lizzy swim therapy starting this Thursday!!
Happy Spring!!!

Many prayers to all the sick kids!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth






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