Sitting up ( with some help!)-'Living with SMA Type 1

Dosing 3 Spinraza - Anxiety with Living with SMA Type1

Just an update on Lizzy and issues we were dealing with.

Just want to step back a bit and discuss the last several months. Lizzy has had issues where just walking out of the room she has to have coughs before I walk out to even go into the other room for a second. She has been using getting coughs as a way to calm herself down. Its gotten so bad where her and I barely leave the house. Its been all summer and most of last summer.

We knew Lizzy had some Anxiety issues but, not to the point of it causing her blood pressure to get high. She would break out in patches several times a day right before the anxiety hits. We tried to get her on something to help that was non addictive. The local NP put her on a med that is for allergies but would calm her down a little. but its effects had warn off.  I tried Calm-EZ all natural for years but its effect did not work anymore either. It has made life hard for her and us. My health is not the best right now because, her and I do not leave the house very much blaming it on allergies for her. NOPE..... its anxiety. I feel so bad she has been having these issues and her quality of living had gotten worse by this not being addressed. We did not know how really bad it was.

The good news is that she is on a very light anxiety med and small dose blood pressure pill. She was given the meds yesterday. Going home from Madison this time was the best in two years. No coughs she was calm. Usually, we would have to take both cough machines with us because I would have to cough her almost the whole trip. Not  yesterday! We had Lizzy back!! She was sucking on  prime stick beef jerky flipping it with her tongue. No Anxiety!! She was laughing at her brother and making jokes again. We were so happy! That is 3 1/2 hour trip and NO COUGHS and barely any suction. It was so great!! Anxiety in kids needs to be addressed! She told us that the reason she wanted coughs all the time is because, she felt her throat close up and thought the cough would help. It breaks my heart she had to suffer this long with this issue. No one should have to go through these issues. I sat and cried my eyes out last night over this had how this has affected her life. Not even the health caregivers were concerned about this issue.

Her Blood work was perfect, her diet was perfect, her Echo was normal and her kidneys normal from scans on her kidneys.  We spent two full days at Madison having injection done , testing and clinic visits. Very long days.... and very stressful not knowing what was going on!
Spinraza is making her so much stronger and causing contractures too!

I just want others to know Anxiety can cause other medical issues if not addressed. Strokes, heart attacks etc.  Do not feel bad if you or your child has it ! Just get diagnosed and treated.Some parents think these anxiety issues are ANS related issues but, Lizzy never has had an "ANS Storm" .Not that others do NOT have "ANS Storms" I am not saying that by no means.
Lizzy has now for two days only had coughs during her treatments and very little suction. Life is good!!

Lizzy's quality of life improved 100% in one day with the new meds. I do believe in miracles because, I live with one!

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