Learning, Loving and Seventh Birthday- Living with Spinal Muscular Atrophy Type 1

Our Rock Star, princess, little miracle child turned SEVEN Years old yesterday!! Can you believe it!!
Its hard to believe she is this old. She is doing well and such a fantastic kid!! Thank you God and thank you to my dear friends in the "SMA World" for helping us get here!!  What do you say now DR. Morgan? Hmmmm? He told Christen" Lizzy would not make it to one let alone 2 years old." "EAT SOME CAKE  DR. Morgan!! " God bless you DR. Morgan . I do not let that man get to me anymore. Lizzy is doing well and that is all that matters!!
Lizzy has been on the AA diet since she was 1 year old. She has been on NIV protocol since she was nine months old. We have great doctors and great therapists. Last hospitalization was March 2005. She has been on donor breast milk since she was around 2 years old. I still research everything I can and learn more all the time!! I started using Fruits of the Earth a few weeks ago and Lizzy is doing great on it. I use about 1 teaspoon in her food mixture.


We have been so busy!! She  has been doing school work now every day for 5 hours a day now when we can. She is like a sponge!! She has been doing http://readingeggs.com/  and she loves it!! She is already actually reading!!

We have down loaded the clicker 5 evaluation program but I still trying to figure it out.

Lizzy got her new Elbow splints  in the mail  last week and what a HUGE surprise. One pink one purple and she wore them with out a hassle!!She has a new seating system coming here soon for her purple power chair. 

We have had so many appts these past few weeks.We had 4 appts last week. Saturday we had a football game with Caitlyn cheer-leading , grocery shopping at Sam's and Sunday Lizzy's Party. This week we had a appt in Indiana with a great lady that said "we can do things ourselves to help Lizzy's rib/shoulder blade"She is a Pediatric Myofascial Therapist Specialist that has taught at Northwestern. She does all sorts of Physical therapy. She is excellent!! Taught us how to help Lizzy back , ribs and to also help Lizzy's scar tissue in her tummy to prevent getting a bigger g-tube. I was impressed!! 

Tuesday we had Speech. Yesterday , was Lizzy's "Real Birthday Day" as she told me and her and I watched Corbyn.  Well, Lizzy and I watched him. He was into everything!! From toilet paper to dog food!! He was fun though but wore me out!! 

Today Lizzy had swim therapy and we went to Hobby Lobby then home. 

"sigh of relief" I can relax tomorrow. Just Lizzy and I tomorrow I think so far

Paul's last day of school was today . He scored the highest in his class and missed NO days of school since the day he started. We are quite proud of him. Now, he can relax a few days and hopefully get a job soon.

I feel great things coming for us in the near future. I hope it happens.

I just have to say if your child has SMA please get blood tests done every six months to check if things are okay.  no matter which type they are. Many older kids are having issues and I pray they find a way to help these precious heros.  I had to make some changes in supplements recently because Lizzy was starting to drop in her aminos. Also, Calcium citrate is so important, as Vit D 3 is and Vit C. Make sure you check essential Fatty acids, Amino acid profile, Carnitine Levels and Vit D levels also besides regular blood tests like the CBC with differential. 

You need to ask for these tests because the doctors will not just do them. YOU NEED to keep a close eye on these things. To help keep your child strong and healthy do these tests . Its so important. I am pleading with you please. Help your child. You can not blame it on the AA diet because that is a crock in my honest opinion. These kids never did so well until the AA diet. The diet works if you get blood tests done regularly and monitor diet and figure out what works for your child . Not saying any parent has done anything wrong just some constructive advise from a grandmother that cares about each and everyone of your children. 

Well,  as fall takes over we with great sadness will miss the summer. Stay well and healthy. Thanks for checking in on us. 

God Bless and Thank you for being a part of our lives!!
Thank you for all the birthday wishes and the the gifts for Lizzy. 

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

www.our-sma-angels.com/elizabeth