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!