Living with Spinal Muscular Atrophy -Frustration with Ignorance

I have to say I am very frustrated with the medical profession in this area when it comes to SMA. How many babies are going to die before they actually accept that there is a care guide for SMA.
I spent the morning talking on the phone with the parent of the baby that earned his wings a few weeks ago at the tender age of 9 months old. He lost his life at in area hospital. He was a twin. His sister shows no symptoms but has not been tested yet.
Listening to this mom's story brought the same grief I felt over 7 years ago. How can these specialists in central IL can be so unprofessional  not to research the information about SMA and give the parents NO HOPE? They actually told them its inhumane to trach a child with SMA. What? Its inhumane to let a baby die of suffocation and starvation. He did not die from SMA he died from ignorance of the doctors in my opinion.
I miss DR.Hough so much because he listened and did everything he could to help Elizabeth.

Recently there was a video posted on a well known SMA doctor that  questions prolonging these kids lives. Really? What the heck  This doctor britches got so big that they are playing GOD now? This doctor does not deserve to care for these precious children. The video was quickly removed  with in hours after some parents saw it.  Why does this doctor  adorn herself/himself an SMA doctor? What is going on? What gives these doctors the right to say these things? She/he is a traitor to our cause. She/He is traitor to them self.

We need doctors that will fight for us like DR.Schroth!! She has helped us many times in our fight to save Lizzy. She is true to us and these kids.
These children are precious gifts and need some special care from people who love them. DR.Schroth is that that person to us and many kids.

There is a family care guide for SMA. http://jcn.sagepub.com/cgi/content/abstract/22/8/1027  Its been published since 2007 This is the universal care guide for SMA. There is no excuses for doctors any where not to know about this.

We need to get more awareness out there!! We need to make these doctors listen to us!! What can we do?
I need ideas here to get these doctors to read the information and practice this care plan!!

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

Living with SMA - The Kindness of People in the Community and Another Divine Intervention

The Fighting for Lizzy Benefit was last night. It was not a huge turn out but considering the weather and how this area has been hit hard with the times it went well.
We raised enough money to help pay for Elizabeth's therapies, some trips to doctor visits to Madison and some things Lizzy needs we are unable to get her . That is just so awesome!!. My bows I made brought in some good money. I was shocked to see a bidding war between three ladies over them. Amazing how something I do as a hobby but as one grandmother told me ( made with love)  went over so well and raised money for Elizabeth. The bows I make were inspired by Elizabeth. I was going to buy her some one day and I saw how much they cost and decided I would teach myself how to make them and I have now for a few years. The bows I sell as logo " Inspired by Lizzy".

I was disappointed that my old friends from here and some family did not show up but all in all it went pretty well. Our goal was getting enough money for good down payment for a E150 van for Lizzy. That did not happen but your goals are always bigger than reality and we are just as happy for what we got.  So, many people we did not even know came to the benefit because they heard about Lizzy and wanted to help. It was so great. Lizzy has touched many lives in this community. Thank you all that attended, helped , donated and bought!! You make me proud to be from Pontiac,IL. All four generations for the auctioneers were there from 1 family. The auction went great. My friend Deb Zebell helped so much with getting the donations and so did Billie, Dawn, Melanie, Vickie and Beth. Christen did a lot of running herself.  Barb did Face painting also.
Its been a crazy last few weeks.

 Lizzy is over her sinus infection and doing well. She had a blast last night. She is super whiny today. Kinda of hard on the ears and the nerves. We were going to Easter Seals today for a Halloween party but.... Lizzy was way to whiny to go. Hoping she is NOT getting sick.

My drama for last week was Christen losing my debit card. You know that feeling where you get this over whelming urge to puke your guts out? The pain in your stomach is so intense you can hardly breathe? We were shopping after swim therapy last week and had to get some last minute things for the benefit. I used my debt once. Well, Christen keeps it in her wallet with my drivers licence because okay lets face it I do not leave the house much and with all the things we have to carry around with us me carrying a purse I might loose it. It had fell out at one of the stores we went to when she paid cash for Lizzy's Halloween costume. She had not put it back in the regular spot and had it in her cash. After lots of prayers she found it in the last place we had went. She had ran in alone. The cashier had picked it up off the floor and gave it to the service desk.
Oh my gosh!!  I can not believe an honest person found it. Amazing. Divine intervention at work again!! My chanting prayers were answered.   breathing a "Sigh of relief" Christen got a 15 minute lecture after I got it back. Then we went grocery shopping.

Reed Michael is home. He is some pain but did not need surgery because he is healing well. He had streph in his knee and is healing well. It was great to see him !! So glad he is home. He can not do much for eight weeks.
Paul has been actively looking for work.... No luck yet!!

Now, to get my house clean and life back to normal as ever as normal is.

Thank you for all that helped and donated at Lizzy's benefit!!
Keep us in your prayers!!
"We believe in miracles because we live with one!"

Fighting for Lizzy bracelets on Now on Sale  for $2.00 and .50 a piece shipping and handling.
Send money orders or checks to:
All proceeds go to the Fighting for Lizzy Fund
Make sure to include how many and your address

Fighting for Lizzy Fund
219 East Water St.
Pontiac, IL 61764

The Dove means HOPE.


www.our-sma-angels.com/elizabeth

Sigh of disbelief and Believing in Miracles - Living with Spinal Muscular Atrophy type 1

Don't you love Lizzy's new kimono? Her Aunt Rita and Uncle Jim send her one every year for her birthday!! Hard to believe Elizabeth is seven years old!! She  did not want her picture taken so I had a hard time getting her picture above.

Its been a while since I have updated. Lizzy has been great for months. She is very much quite aware of EVERY-THING that goes on around her. She is very opinionated about EVERY thing also. If you need to know anything just ask her. I love her so very much. She is just a great kid.
 Lizzy is  now showing the first signs of a sinus infection so I have upped treatments today. Keep her in your prayers. She is okay right now but secretions galore and stuffy nose. No swim therapy today :(  first time in a long time. We just could not chance taking her out with the symptoms she is having. She was mad about missing swimming as she loves it!!
These days I have been so busy . My husband's lap top was broken (from unknown means) I do not have time to pop on the home pc to update. I can not get too far from Lizzy because she needs suctioning, moved around, help with home work or just wants me close. Which is all the time. I am not complaining its just the way things are around here. Its my life.

Reed Michael graduated today from the guard but.... with all that pride we felt was quickly replaced with  worry and concern due an accident or something that recently happened to Reed . Just look at his leg below.after the cake I bought for him that will be taken to him on Sunday. This all happened right after graduation.

 You are beaming ear to ear with pride , then a sigh of disbelief and the reality of  Reed Michael having surgery today because of an injury or  a spider bite. His leg swelled double in size and having to be drained. Have you ever just been so upset that your knees go weak and your heart just aches and you are afraid to breath? OH  MY gosh....... then you think OMG.... this is NOT A DREAM this is Reality!! This just sucks!! Poor Reed!!

The school here is not getting Lizzy a tutor. Its now almost NOVEMBER. She is learning on the computer yes. but she needs a teacher. She just  does not cooperate for me or focus on the one to one with her and I.  The Video conferencing is out according to the school. Come on people. Elizabeth is 7 years old. I have been trying to do this alone but as GREAT as I am I am not educated to be a teacher. I am educated in Sociology. Political Science and Criminal Justice. I am a great nurse to Lizzy but that is an inherited and in my genes. My great grandmother was a midwife in Canada. Teaching qualities have never been my expertise.
We have been doing ABC eggs and she is doing well but she needs more.

On a good note. I had two great things happen to me this week. My blog is on the top 30 on the SMA web-sites for 2010. That was quite an honor.People actually read my blog!! Thank you.
I also got a letter from another parent praising me for just being me. That was really nice and quite unexpected.
Lizzy's fundraiser is next week-end. Lots going on!!

I have been making hair bows and will be selling them at the fundraiser and making some for another organization.  I am also making gifts baskets of many different items to do a white elephant sale also. I have not had much time all summer to work on making bows but now in the evenings I am making some. I need to power sew to make a lot!! If I was not so darn picky I could mass produce!!

Paul has not gotten a job since he has finished school. He has applied for jobs  but NOTHING as of yet! I know patience.... He  was not born with patience!!  He is afraid its his age. The man is 56 years old.

Robby was here for his birthday Oct.3. He went golfing with Paul.  I made him a home made cake. His school colors. Hard to believe he is 13!! Oh my where has the time gone. I remember his first Harley Coat we bought him. It was size 2. Brings tears to my eyes. Life seems to fly right on by.

A baby earned his wings a few weeks ago that was diagnosed with SMA after he was hospitalized  at age 9 months in an area hospital. We live so close but feel as if we were so far away because no one called or did we know about this little one. This  hurt  us so bad that the hospital is still not doing the protocol for SMA. Send prayers to this family. I have talked to the patient care director and got no where but did sent her the respiratory protocol from DR.Schroth. What can I do to get these people to listen to me? Who can I talk to to help me with this?
An article about Elizabeth is being done soon by a local paper because of her benefit. I will again express the importance on the area doctors at least looking at the protocol. It could save a baby's life. These kids are miracles and their lives so precious.

Please add Reed Michael, Elizabeth and all the families that need prayers to your list.

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