We are home! _Living with Spinal Muscular Atrophy Type 1

 First Dose:
The trip to Madison was pretty horrific due to a lot of road construction from here to Madison. Kolton, loved the whole trip.

Lizzy had her dosing yesterday at 12;30pm . The staff at the hospital was so great!! They took Lizzy back and was done in less than 45 minutes.
After, a few days Lizzy started to smile with a half smile. This is so Great!  Exciting!! she can hold wider objects in her hand.

Second Dose:
It went as easily as the first dose.
Lizzy has more of a smile  and she is still working on that. Last Saturday her mom was doing her hair and Lizzy rolled over ! That has not happened in years.
Seeing improvements with every dose!

Keep Lizzy in your prayers!
I will update after next injection. 

New Journey- Spinraza Living with Spinal Muscular Atrophy Type 1

Lizzy has for her first Spinraza injection on Tuesday. We are excited, we are worried,  and we are in new a new phase in Lizzy's life. Anticipation, is the worst. for all of us!

Lizzy is a great kid and knows so much about life it scares me. We let her make her own decisions and basically she has since she had her spinal-fusion when she was 9 years old.

We have a terrible ride with the school system here. She can NOT attend with out a nurse ( I am her caregiver) . No one in this area has ever dealt with SMA Type 1 like Lizzy has. The past few years w the school years here have been full of illnesses. Not just one season anymore. We have has three great teachers but, they are limited on the time they can spend with Lizzy. Not even  2 hours a day. Sad, but Thank God Lizzy has picked up things easy from her last few teachers. No Skype, NO robot allowed here. Privacy issues. Really?

Its been pretty low key around here. We do not go many places anymore. Its hard because, Lizzy's brother has visitation 3 days a week and his dad does not like to compromise unless its him that is asking. Lizzy's brother is going to the Madison with us for the injections and to stay at The Ronald McDonald house. They both love staying there. This is the first time we are going since the reconstruction is done.

Wish us luck and send us prayers on our new journey for Lizzy. Any procedure is scary for Lizzy.

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! 

Lizzy just entered a whole new world- Living with Spinal Muscular Atrophy

Lizzy has graduated Eighth grade! We are so excited!  She will attend high school in the fall. Hopefully, she will be able to go to the high school a few days a week until Flu season hits. Her mother will be accompanying her to school. Hopefully, she will be able to accessibility communications to help them hear her. We can hear her just fine but, sometimes people have a hard time with hearing her. We pray she gets approved for her new power chair. She has a out grown her current chair. She had a huge growth spurt this past year.
Lizzy is in love with her new cousin born May 25.

Its been a fast  last few years with all the babies we have in the family. Six babies in 2 years and 7 months in our family!
Lizzy has been doing well since she finally got to baseline from the RSV this past winter. We kept her at home. It took a lot of time and patience but, our girl and the fighter she is got her though it.
We worry every day about her insurance coverage. Scares us to death about our president and the way the government is changing.What has happened to truth and justice? The man in the white house is a liar everyday. How can respect someone that lies to the American people?
 On a good note its finally summer. We are enjoying it!

Lizzy is doing great. Few sinus infections here and there but, doing well. Sassy as ever! Her brother is growing so fast!
I am so busy these days so, I do not get to update very much!
We are losing DR.Schroth in about a month. So sad! We dont know what we will do with out her. We have gottem through the last 14 years with her just hope we can get through next 14 years and beyond with out her. She helped save Lizzy's life and many kids with SMA. She fought for these kids and now she is quitting her practice. A new chapter in our life starting Jan. 2018!  Pray we get through it with not many issues!!

Happy Thankgiving to you all!!

www.sma-angels.com/elizabeth 

Summer is finally here/ Living with SMA Type 1

Its finally beautiful out!

So, much has happened this last year. So, many babies in our family and we just had a new one this past week. Ava Jean Grace Huette born to my grandson and his wife Ali.

We have dealt with a lot but these things have made us stronger. We figured out who is important to our lives, 

Lizzy is doing good . We have an upcoming appointment that might help her! 

More to come to come stay tuned 

Losing a parent- Living with Spinal Muscular Atrophy Type 1

My dad passed this morning at age 81. I have been seeing him almost every night for a long time the last few years. I got to know this man so well. I will miss him so much. He was my last parent. I have lost 5 loved ones in 4 years.
Dad you are now at peace. No more pain and you are with the love of your life. I learned a lot about you these past years and I think I helped make some your days better on this earth.
Love you so much!