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.