Living each day- Living with Spinal Muscular Atrophy

We have a new baby in the family named Rylee Mae Huette. I am a great grandma at 54!!. She was born Monday October 8th. My grandson Reed and his fiancee Ali are the pound parents of the 7 pound bundle of joy.
 Christen,Lizzy and I got to see her on Tuesday the day after.

Lizzy had to go to Target and pick the baby out her first princess rattle. She paid for it herself.
We have a a busy last few weeks. Girl scouts, school, therapies,  taking my mom shopping after her care meeting today and making cookies etc.

Lizzy's dad came by on Sunday and carved pumpkins with her. No, I did not take pictures. First time he has come to see her here for 5 months. Breaks me heart how many times he has hurt her. I try to keep her busy so she does not have time to think about it. She knows what he is like but loves him any way. Sad....   Christen has to be the one to change that and she will not. I will say no more.

Lizzy is at swim therapy above getting her wild mane dryed. Then, her at girl scouts in the last two pics

The count down for her spinal fusion has begun. Nov.12 is the date. We have to be at UW the 11th. I am more panicked than anyone I think. Please add Lizzy to your prayers she gets through this quick and everything is okay. Its breaks my heart they have to cut on her. I do not want Lizzy to ever have to suffer pain but....I guess she will.. I feel she will do fine but.  will I?

Paul has gotten worse. He is cranky. sugar levels are wacky, his memory is not good, he is dizzy he is in so much pain. I made him go to the doctor yesterday with me. They ran tests on him. Please keep him in your prayers. I am fine just need to lose weight as I have known for 7 years. Steroids for my back made my appetite go nuts. I can not lose the weight I gained  but I am trying. Its  not easy when you have to spend every penny you have on running your household and paying the bills. I have learned to survive on what we have and not focus on what we do not have. We have survived a terrible last few years financially but we have gotten through. We have good friends that make sure we are okay. That what life is all about Family and Friends  Thank you my friends for being there for us.

Christmas is approaching so fast also. Its almost November. I like the cooler weather but today it was 81!!
Christen, Lizzy and I took mom to Kmart to get what she needed. It was fun to get out but the lady wore me out!! God Love her.  Her health is so much better than it was a year ago.

Our prayer go out DeeDee's family this week. She earned her wings last weekend. Here is her web-site
http://alittlemageinthefamily.blogspot.com/2012/10/my-last-weekend-at-home.html

Huge prayers for Tabitha English . She is very sick in the hospital . Please add her to your prayers.

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

Lizzy's Special Day and Age Nine Photos -Living with Spinal Muscular Atrophy

Lizzy had a great birthday party with family and friends. Hard to believe our little miracle has been here nine years. I remember the day she was born and how the nurse was holding her up right and I said something and Lizzy's head bobbed around acting like she knew my voice. That was the last time I ever saw her hold her own head up. This sweet little girl changed my life. She is a gift from God and so very precious. Every day I am so blessed to have her in my life. 

Here is some pics of her party and the pictures I took at her photo shoot shadowing the photographer and family friend. I also posted these on my face book page. 

"We believe in miracles because we live with one!"


"Being defeated is often only a temporary condition. Giving up is what makes it permanent."
www.our-sma-angels.com/elizabeth

Life just Got Better!! -Living with Spinal Muscular Atrophy Type 1

Life at our house just got lot whole better. Lizzy is able to control her power chair herself. Make it go high or low, put the flashers on, put on the lights, Make herself lean back if she gets choky, Make herself sit up more ,make the horn blow and not worry about bumps on the sidewalk or on her ramp.
I do believe in miracles, I do believe in prayers I do believe in magic. I believe in Elizabeth and all she is. She is sassy sweet opinionated beautiful almost nine year old girl that stole my heart when she was two weeks old. I believe God put her in my life for a reason. No regrets ever for the path my life has taken. Thank you all that help me with prayers and for those of you that support me in what I do. Days like this one when she gets something she really needs makes my heart just sing.
Family is so important. Keep them close in your heart.
Times like today I get a little emotional. ♥ ( From My Facebook Page)