Loss of a True Hero,Surgery Date Changed and Lizzy is Turning Nine! - Living with Spinal Muscular Atrophy

We lost a dear friend, hero, icon, inspiration, caring loving woman in the SMA world yesterday. Amy Marquez(video done on her) http://www.ric.org/aboutus/stories/amy-marquez/. She had SMA  like Lizzy and lived to be 41 years old. It broke my heart when I heard the news . She is leaving behind her husband and two daughters. She was a "no nonsense "kind of person and actually called me on the phone one evening after I had a bad confrontation with a president from a SMA support group. Amy was concerned on how badly I was treated and apologized to me even though it had nothing to do with her. She was upset   to what had encountered and said "she would make sure nothing like that would happens again. " That was some years back. She always invited us to cookouts at her home in IL and for reason or another we were never able to attend. Saw her  at the FSMA conferences every time we went except last year. There will be a void in the SMA world now where this woman fought for the rights of adults and kids with SMA My prayers and tears to her family.

Lizzy's surgery date was set to October 29th and was changed yesterday to November 12th. It was hard enough agreeing  for her to get the surgery but, now postponing it to a later date causes us great concern. Its like a week from Thanksgiving and what happens at holiday time? The Flu season begins... Not sure when it is going to happen NOW because we are trying to get an earlier date. Lizzy on the other hand was thrilled that she might be able to go trick or treating. LOL

Lizzy new power chair should be here any day. I wish it was already here. She could be up running around in her chair!!
No word on Paul for his appeal for Social Security as it yet. Paul is worse now than before. He is dizzy a lot and fatigue captures him every day. His sugar levels are better but some days are worse than others. We are back close again like we used to be. I think because of all we have been through the last few months has brought us back to the way we were. We are relying on my small income to cover us. Its been  a struggle but we have gotten through it. We have managed this far. I would not know what it just to go shopping at a mall!! I feel a chuckle coming on. SHOPPING??  .... something I have learn to live with out. This coming from a woman that used to shop every paycheck for clothes about 10 years ago. The money I blew... gives me chills.  I would feel very guilty to spend money on myself for anything that was not a necessity. I have programmed myself to watch every cent and do not pay for things we do not need.  Food and bills are my main concern. I do not use gas because I don't go any where. In the "whoppty van"( My mom's van that I have) there is still a half tank and that has been there since July!!  I do not go many places except for Lizzy. LOL It doesn't upset me. I always find things to do and Lizzy keeps me very busy. I am hoping to sell some bows I make to help with Lizzy's hospital stay but I have not been able to do that much since she has been sick ( getting better) and so much going on. I plan on working on quite a few this week. My carpal tunnel is better again with the stretching I do in my hands almost every day. Now,  since some of the drama has died down I can focus on getting some bows done at to the beauty shop that sells them for me.

I apologize if you have not heard from me. Its been a very ummm.. "eventful" summer and dealing with emotions this year kind of took me over. I had to deal with things I should of not had to deal with  but.. all is calm now.
Keep Lizzy in your prayers as she is getting over a illness and still has a stuffy nose.


Lizzy's birthday is Sept 29. She will be nine years old!!! I can not believe it!! She is having a zebra print cake with hot pink on her birthday for her party.

Thanks for caring and checking up on us!!
"We believe in miracles because we live with one!"