Saturday, June 9, 2018

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! 

Friday, June 8, 2018

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!

Wednesday, November 22, 2017

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!! 

Monday, May 29, 2017

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 

Thursday, March 10, 2016

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!

Friday, February 19, 2016

Update and Rare Disease Day February 29, 2016 / Living with Spinal Muscular Atrophy Type 1

Many times common symptoms hide underlying rare diseases, leading to misdiagnosis and improper treatment at a later stage

Almost half of rare diseases do not have a specific foundation funding or advocating for the disease.

Spreading awareness about rare diseases can help contribute to increased public knowledge, support for clinical trials and scientific research, and development of new diagnostic and treatment procedures.

80% of rare diseases have genetic origins

Rare diseases case 35% of deaths in the first year of life in infants

Those fighting rare diseases also face high cost of healthcare that requires visits to specialists and uncommon procedures that are not always covered by insurance.

95% of rare diseases have NO FDA approved drug treatment
Half of people diagnosed with rare diseases are children. 

Long over-due update -

Sorry, Its been so very long!!
Its been some rough times and been some great times this past year.
We have had some miracles and we have had some disappointments.
We have lost a great friend named Bernie that broke our hearts.
We had three births last year, Lizzy had a new baby brother and a new cousin born 6 days later.
We had a terrible flood in December and my son in law and his best friend almost lost theirlives trying to get my daughter Dawn and her family out of their flooded home after the levy broke on lake they live,
My dad had been very ill and a terrible time at one nursing home and got him into another.

Makes you wonder how we got through it all. The answer... faith and the love of family.

Just wonder sometimes what will happen to our family when I am gone. Who will fight for the the rights we deserve? I take it upon myself to make sure everything is okay.

Dealing with my dad has been the hardest. One day he is thankful for me being around and the next just a ripping on me for being involved. Does he want me there? Does he really mean those things he says yo me? Is he just in pain or does he really mean it. He gets Dementia when he is sick or in pain sometimes. That is so hard to watch.The hardest part is his incontinence. Is just plan sad. Is getting old a blessing? I am his caregiver too when I see him besides Lizzy's Its so hard at times and emotional.
 I want to be strong and able to function when I am his age. How do we ready ourselves for old age?

Lizzy doing well. Turning into a young woman. She has lost some strength but working on ways to help her get that back. Not bad just a few things causing her difficulty. She is too honest, too mouthy and one of my precious gifts. I need to be around to help her as long as I am able.
Just wish I could stop the age clock for all of us and just chill for a few years!! Need to get caught up with just daily things I have missed since so many things have went on this past year.

                                                             Lizzy and her new brother!!

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

Monday, August 24, 2015

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