We just got back from Madison. It was a great visit. Lizzy saw all her team from UW and wow it was one of our best visits. She has the best people watching over her.

She had 30ccs of blood work. One poke! They are the best! I have been getting her results back since Wed.  She is normal in everything! That is so great to hear, She is 19 and I have made changes on my own and was certainly worried, Phew! That was great to hear.

Lizzy's x-rays since her Spinal fusion have not changed! DR. H did a great job!  Thank goodness Lizzy had fusion while he was still there. 

Lizzy is a strong amazing young lady. I am so proud of her. 

Prayers for all the sick kids and the world! Spread Kindness! 

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

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/

Feels like the longest January ever! / Living with Spinal Muscular Atrophy Type 1

Sorry, about so few updates these day! I will try to be better at this!
Boy, This has been a long month! They say it is because, we have not had much sun this month.

After, our stomach flu illness all is back to normal.

Lizzy is bored so bad! Netflix, Disney Plus, our dish network or all the 1000s of games she has downloaded from Itunes can NOT appease her boredom. We are on lock down to avoid winter viruses. She has her next Spinraza injection in a few weeks. We had to cancel the last one due to her and I had stomach flu.

Lizzy had her IEP this week and did really well. They even talked about her designing t-shirts! isnt that cool?  Only problem Lizzy needs updated Ipad and the school is not able to purchase her a new one. An old one but she has an old one. She just is not able to use some of the apps because her Ipad is too old. Need to figure that one out.

My diet has to start Monday! I don't get to walk anymore and the weight keeps piling. I feel like a wobbling penguin! I can not help I love food!  I have never been as heavy as I am now. I went back on my exercise bike yesterday. Now, to continue!! I need strength!

Believe in miracles!
Vote in the primaries!! Save our country!

www.our-sma-angels.com/elizabeth

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! 

A long over due update- Living with SMA

August is SMA awareness month. Here is a picture of Lizzy and her friend Kyla.
Lizzy is my hero.
I have not posted in so long and I apologize. I have been so busy these past few years its hard to even find 15 minutes to just sit down and post.

My dad has surgery again tomorrow to remove skin cancer on his arm. Its supposed to be routine but when you are 80 years old nothing is routine. Add him to your prayers please.

Lizzy has been doing great except for her sassy mouth at times. She is the worst when I am doing her last treatment before bed. I do not know where she got the mean streak but, I do not appreciate her attitude and how she thinks she does NOT have to do treatments at night. I make her pray after she does this and ask God to help her not be so mean. Not sure what causes her sweet demure to turn into a smarty pants little stinker at night. It will stop or her mother can do her treatments. She is beautiful and a great kid the rest of the time. I guess "Welcome to preteens"

My family has been cleaning my dad's house out that had 5 generations of stuff in it. We have found a lot of cool stuff, creepy relative pics from the 1800s, dust and a lot of junk. My gosh this has been the most over whelming experience in my life. Its been just 6 of us doing this. I mean this house was packed from the basement to the attic. We cleaned this out without central air in 90 degree weather. It literally kicked my hiney. I lost 12 pounds in a week and I believe it was from all the work I did!  You find out a lot about people when it comes to hard work. The ones who show up and the ones who has better things to do. Sad, but very true. Almost done. I am amazed of the work we have done and how much has been done.

I was upset last night as I watched a child with SMA dying on facebook. It tore my heart out I could not watch it anymore. The sweet little guy earned his wings this morning around 7am. How could a mother record her baby dying? Some people are "social media' Crazy. All I could do was pray for the little guys so he did not have to suffer. Not everyone thinks like me or feels like I do . I fight for my kids and grandkids. They are gifts from God. To watch them just die and do nothing is to me a terrible sin to me.  Fly high sweet boy fly free from your suffering.

Summer is almost over and fall is sneaking up. Where did the time go?
Lizzy's mom is expecting a baby boy in November. Kolton Paul Huette will be his name! Lizzy is excited! He is SMA Free!

Thank you to my friends for keeping up on us and sorry again I have not updated sooner.

"We believe in miracles because, we live with one!"
for info about Lizzy in her earlier years  please read Lizzy's website
www.our-sma-angels.com/elizabeth

Lizzy turns 11!!! - Living with Spinal Muscular Atrophy Type 1

Today, Lizzy turned 11 years old!! !! A little bit over 10 1/2 years ago we were told she would not live to be 1 year old let alone 2 years old. I did not believe it and told our family we were going to do what it took to save this precious baby!! Well, I am here to tell you she has defied all odds., She never stops amazing me and her doctors with her strength. She does not let anything stand in her way!! She is a great kid and tells you like it is. She is my inspiration and holds a huge place in my heart.
She has been through an emotional roller coaster the last few years and came through it like a champ. Love you Elizabeth Leeann Huette hope you have a great Birthday!!