Monday, April 16, 2012

Moving Right Along - Living with Spinal Muscular Atrophy Type 1


It seems Lizzy has bounced back and back to her norm. "Sigh of Relief" This last illness scared the bejeepers out of us but she bounced back quicker than any if us anticipated.
We went to church yesterday with the family and Lizzy actually loved it. Caitlyn and Corbyn were baptized and Dawn joined the Lexington Methodist Church. So, we may be going every week. Since, she goes to bed earlier and up earlier it was not hard to get her ready to go and  on time. We actually were early yesterday. Isn't that amazing. LOL  I think we will be going to our local church though. I belong to the Methodist church about two blocks away so we could even walk and no loading the van would be necessary. We shall see how this goes.
As, I stated we have went through some changes since Lizzy hospital stay. Christen is home more and helps with Lizzy's nebs at night while I get some of my stuff done. That started over the weekend. Its seems to help me get caught up on some of the stuff I have to do too. Only problem with the going to bed early is now my eyes pop open at 4:30am every morning!! Lizzy wakes up and says "Nina pleeeease lay back down I am not ready to get up!" So , I lay awake for a few awhile and sometimes fall back to sleep but not often.
Oh, let me tell you about my crazy hair mess up over the weekend. Okay, I have not been able to get my hair cut in months so I have this natural curly crazy hair that is untameable. And .... this natural curly is close to looking like Bozo at the moment. A thanked my Dad yesterday for that gene. Well,  since I went through all the holidays with crazy hair that was turning white around the face I decided to color it. Well , The first time Saturday it came out close to a Hot Pink. Yeah, Hot pink. So, got the color I usually use for touch up and it turned Bright Red!!!!! oh my gosh I was so upset!! OMG imagine.... Going to church with a bright red mop on my head!! Christen laughed and laughed. Grrrrr Any way, I sent her out again to get me a  5R COLOR that my beautician recommended awhile back to fix one of my crazy hair color disasters. It worked but my hair is so long ( for me) . I hate my hair long because its so unruly. My kids like my hair longer and told me I could use a curling iron. What ever? I usually do not have time to wear make up let alone use a curling iron. Since, I no longer can afford the beautician I guess I cut it myself, curl it or cover it with a huge hat.  I really do not like white hair on me so I need to be careful with hair color.
My plants I have started in my basement with hydroponics and some with grow lights are doing well!! I have to transplant the hydroponic tomatoes this week and set outside during the warm days so they can grow tomatoes. Beautiful looking. I have flowers that are also doing well that have been under the grow light that are doing well too!! I need to get all those transplanted and start more. I love growing my own vegetables and flowers.
Next week Lizzy finally gets her new TLSO!! I have her back to what is was before her illness. That took time but we got it back!! Then working on getting her a new collar since she out grew her last one. Then. she has a wheel chair eval for first week in May. Hopefully, the power chair route will not take that long. Then she will be all set up for summer.
Sorry if I sounded emotional last few posts. This last illness took a huge toll on all of us and we did not really know how it was going to effect Lizzy but..... She is back to herself with a tad less whining!!
Believe in the power of prayers. It works. Believe in miracles because they are out there too!! Just look at Lizzy!!
Thank you all that prayed for Lizzy and helped during this last illness!! You are the reason she has bounced back!!  Love you all!!
"We believe in miracles because we live with one!"

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