Article on Lizzy - Living with Spinal Muscular Atrophy Type 1

 https://www.pontiacdailyleader.com/story/news/2020/12/22/lizzie-huette-battles-sma-type-and-taking-new-drug/4015772001/

Blogging two days in a row! -Living with Spinal Muscular Atrophy Type 1

Look at me... whoo hoo two days in a row!
Its been raining off and on all week. We are in process of fixing out chimney and roof. Well, got the chimney about done but, with the rain I had severe leaking in my ceiling in my bedroom. Woke up to the sound of drip, drip and drip. Sounded like war drums!! . Me, over reacting as usual and thinking the worst, Lizzy and I were up at 4 am had to move into another room fast. I was afraid of her machines. I now have a ceiling to replace since its leaking . Lizzy and I have moved into another bedroom. It will work out but,will take time to get it done. Our room was the last room redone in our house. Now,trying to afford this and the roof and chimney costs oh my.  I am getting ready to move us down stairs in our dining room ( I have french doors) . So, Christen and I tried moving my queen size bed downstairs today. What a show that was. Two motivated determined women with a box springs stuck in curve the stairway. needless to say I did not work. To make it worse I had to pee! ugh....  Much easier with the California king size I had. That was two twin box springs and one huge mattress. So, I think I am going to try to find me another bed.
 Summer has been good but, as usual I have no time. Always, watching kids. Having 4 grand kids in a short time after thinking your kids were done having kids a few years back changes everything. My second daughter on baby#4 needs help a lot. Being a close family as we are I always say yes to helping out. Lizzy throws a major "Hissy Fit" with all the kids around. She loves watching them but if they start bothering her she gets so mad!  Oh..... just love teenagers and their attitudes.  I will be 60 years old this year! I think of my mom and dad being 60 when they were alive not me. I look in the mirror and I keep saying gesh I am looking more like my mom every day... I am heavier than I ever have been too. The internet research blames it on hormones. I blame it on not being active and holding babies for two years!  LOL  My knees are getting bad!
Enough of me.
Lizzy is doing well. She is getting to be so much an adult. I did not think we would make it this far 14 years ago. She has proved them all wrong and has done so well. She refuses to take the Spinraza. The drug that so many kids are using to help. Its cured some babies and made them stronger. She has face book and sees what other have said about side effects. Her anxiety about trying the injections is really bad. She has to rely on others to move her and take care of her so, she is in charge of her body and if she does not want to do something then that is her choice.
Just a short update but, I had a little time.
Pray for our country!
Enjoy the summer! 

Ear ache, Winter blues and web-site for rare diseases - Living with SMA

Lizzy has an ear ache and as of about 30 mins ago has low grade temp. Man, you know just when you think everything is great something else happens. I gave her motrin earlier today for the pain she was having. Local doc called in a script for Augmentin. My poor little sweetie. The doc's nurse said everyone is sick. Well, not me and I  am thinking staying  indoors might be the way to go this week. We "nipped this in the bud"and got her on antibiotic ASAP
I had ear aches my whole child hood and they just suck. Found out later in life that they were caused from an allergy to the heat in the house "Dry Heat". Dawn my daughter is the same way. That is why we moved to a house with steam heat over 20 years ago.
Lizzy seems content now and is on Web-kinz at this very minute.  She was VERY whining today and I was so afraid she was getting sick. Lets hope it the med takes care of the ears and that is the end of it.

I have to bribe her to do school work these days.

I find myself lately thinking of all the things I have been through in the past almost 7 years and the person I am now. Thinking about the mistakes I have made and learned from, the relationship I have with my spirituality and how I have never had this inner divine presence that now helps me get through each day besides our brown eyed "Rock Star" miracle child I care for every day.  I think about families that have touched my heart and the families I have helped with info I learned from taking care of Lizzy or they have helped me. The faces of the kids I have met or know because their faces are embedded in my heart in my inner soul.  Why was I picked  of all the people in the world to be who I am today? Is it because I always fight for what is right or he fact I don't throw in the towel when the going gets tough? How could almost 8 years ago I be that person that partied ,rode on a Harley,be a bartender and running a sporting goods dept  thinking my" Big Job" in my life was over raising my kid. I did not take any "**it" from anyone. I was very arrogant because I knew I was "Good" at anything I did. Then, with out notice went into a life of second guessing myself and worrying every night for two years or if we would lose Lizzy  I never ever thought I would be the person I am today. You know I can not sleep at all if I don't say prayers with Lizzy. We have to pray for all those dear to us and the sick kids with SMA. I get MAD  I get REALLY mad at times.
I am consumed with Hope. Hope that Lizzy will be able grow old, the hope that there will one day be cure and no more babies born with SMA. Will it happen in my lifetime? I believe it will I feel it coming closer.

It snowed again....I have had enough of this weather but what are you going to do? Its so  flipping cold.
I was hoping since Easter is so early this year we may have  an early Spring. That is what I get for thinking.

MY diet.....ugh.... I get so good then Slide back.... Shame on me!!

Lizzy made a video for her friend Drew http://www.youtube.com/watch?v=3B0bw6iKo7k . I say in the video that she is  using one hand but I meant one device. ooops 


Many prayers to Lizzy , Jake Goodson and Sophia Doebbert to get better soon!!


Here is an awesome site http://www.crdnetwork.org/blog/blog-for-rare-bloggers-from-around-the-world-come-together-for-rare-disease-awareness-and-support-for-world-rare-disease-day-2010-feb-28-blog4rare/
Bloggers of rare diseases.

" WE BELIEVE IN MIRACLES BECAUSE WE LIVE WITH ONE "
www.our-sma-angels.com/elizabeth