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

How Lizzy uses the computer - Living with Spinal Muscular Atrophy

" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - "Life is good!"

Life is good. Every just think to yourself, " life is good?"Things are better? Then, take a big "sigh" and say "Oh yeah" this is what its all about.

Lizzy got her new Bipap/Vent. The Trilogy. She loves it!!! We switched to a wonderful respiratory care company out of Indiana . Mobile Medical Maintenance. They have RTs in Peoria. DR. Schroth hooked us up . No more dealing with denials from Apria !! Thank you DR.Schroth!!! Apria the company in general has been the biggest pain  in my hiney since we have started getting respiratory equipment for Elizabeth .Yeeeee Haw..... As, I said, Life is Good. They are also trying to get Lizzy a new suction machine and a few other things.
Elizabeth is actually wearing her hand splints , knee immobilizers every day now. She has been back in her stander also. Life is good.

We are searching for a new donor for breast milk for Elizabeth. Her current frequent donor is pregnant. So, happy for Dina and her family but going to miss her . She gave Lizzy her most precious gift  that only God can make.  Thank you Dina so much for helping Elizabeth.

Elizabeth is on her computer most of the time and has been for over a year. She finds so many games online she can play. She uses an online key board for the up /down buttons and uses it to type in where she wants to go. Its great to see her able to go any where she wants on the internet. (Yes, she is monitored). It makes her world so much better. Life is good

My handy husband finally replaced the down stairs light fixtures. Some that have been gathering dust since 2004. I bought some of them  myself when I was getting ready to redo my house. Things have not been the same around here since 2004 The carpet in the living-room was finally replaced . It has been in the dining room  rolled up  in a corner since before Christmas last year.
Life is good.


I got all my wood work washed ,my window seals clean and my curtains washed while every one was at the parade yesterday. Life is good.

We have been cooking up a storm around here. Christen has learned to make pie crust. She made a pecan pie and pumpkin pie last night and brownies tonight.  I am totally allergic. I break out in fat every where!!I have been good.  I am getting ready to make hair bows again for the holidays and for a few fundraisers. Its been hard with all we have to do all summer. We are so busy still but no big trips for awhile.

Lizzy fundraiser is October 23. We have a great committee and I think it will be a huge success!!

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

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Many Changes in our lives this summer

Summer is winding up with some really hot days and fall is sneaking up close behind. Its been a good summer with lots of emotions and changes in our lives. My grand-son Reed graduated from high school and Rachael my grand-daughter graduated from eighth grade . Reed went to Basic for the National Guard.We drove a total of  4600 miles for a trip to Stanford and the FSMA conference with the help from two organizations. We went to Minnesota and stayed with Drew and his family. We saw the Doebberts while we were there. Drew, Sophia and Lizzy went to the American Girl Doll Store restaurant. We had a fabulous time while in Minnesota. Good people, good time and good food!!

We went to Madison ,WI for muscle clinic. Faced the fact that Elizabeth might need spinal surgery. That was a hard to deal with but I have a little help stretching Lizzy now from Christen.
We also have 2 other professionals help us with  helping Lizzy that does MF release and swim therapy. They all agree Lizzy needs to get in her stander daily to help her more. Lizzy breaks out in a rosy rash and holds her breath and says she can not breathe when we put her in it. Truly, she does really its just she wants to stay on her computer all the time. She has gotten really good at doing this sort of thing when she does not want to do something and manipulating us!! Well .....she has had almost 7 years experience and knows how to control us!! We are trying to avoid surgery she needs to cooperate!!

Lizzy saw DR.Hough today for the very last time today. He told her she needed to wear her knee immobilizers , Hand splints, elbow splints( when she gets them) and get in her stander.. He calls her "his miracle."  That is where we get the our slogan. " We believe in miracles because we live with one!"
She came home and guess what? She did not fight me putting her hand splints on and her knee immobilizers on!!  I saw him too. Probably, going to cost me a small fortune paying his bill but he gave me a shot that will get me through the next 4-6 months with out pain in my thumb and my allergies. The only problem is my appetite will insatiable, I will be over emotional( Imagine that) my face will be beet red for about a week, I will not sleep for a few days but not to have pain it is worth it!! It will help my back also. So, weighing out the side effects compared to pain I will take the side effects!! So, I guess I will remain red faced, fat and emotional for awhile longer.
It will be so sad him leaving. Breaks my heart.

Lizzy is sitting here singing county to the show on TV. She loves country. She was on her computer heard Kid Rock shut her computer off and said okay" I am done I want to watch TV. When she was at the MDA Telethon a few years ago when she was the Good Will Ambassador for central IL and  getting a treatment with her silk pjs on she heard Kid Rock on the TV at the hotel and was so engrossed in watching him. She loves to sing so much. She is watching him and has not moved a muscle!! Its like she is in a trance.

Well, they have finally set the date for Elizabeth's Benefit. The committee has agreed on October 23 at the Crystal Palace in Pontiac,IL  Kids benefit  part starts at 2pm . Many things going on.  the benefit is from 2pm -1am then they are doing a dinner , 50/50 drawing, Auction etc. The donations from local businesses have been rolling in. Its amazing!! There will be a country band and this is going be so great! I am so excited  its going to happen!! This benefit will help so much with all the things Lizzy needs so badly and help with the doctor visits!!

Thanking for keeping  updated on us!!

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth