Well its the end of a very busy week.
We are not going to Stanford until October now .
I will check out Amtrak . The MDA recommended them and also a pilot I have talk to thought also they might help. He seems so much wants to help Lizzy. I am not worried about the travel on the train I am worried about the bus. DR.Schroth told me you spend a lot of time on a bus getting to CA when you take a train out there. Lizzy has a power wheel chair and a borrowed manual chair. The sitting arrangements I don't know how suitable on a bus would be for Lizzy.

No one knows what it is like to struggle to pay bills, make sure Lizzy gets what she needs and just paying for groceries or gas for appointments every week unless YOU LIVE it. Its easy for a doctor to say "You must" continue to see me to receive the med that helps Lizzy stay "strong" even though we are over 2000 miles away. Not to many understand the limited resources we actually have. I am just mad that someone can actually control our lives that way. But what can you do? You do what you have to do to save these kids Plain and simple. To give them the best quality life ever. Lizzy is a happy , ornery, non stop talking, sweet, funny, so loved little girl and I will continue to fight for her every day. I have a great friend who took her time to help figure something out for the October visit to CA to help with the flight her name is Karen Slavik. My true friend that cares about Lizzy so much!! We have an organization willing to HELP US because she asked them.In October and the other hopefully we will find help more reources by Feb!! I just feel so bad we have to ask. Ugh.....

My grand-daughter Rachael (12 ) had surgery on Thursday so I didn't get done a lot of what I wanted to get done this week. She did real well and no blatter concerns now and we hope the procedure will help her.

The resouces we have used for 4 years said they would only help us ONLY once a year now. Not a thing about the funding. I guess since the guy that was our contact there that helped us so much left they changed policy. I dont know. I am unclear on what exactly is going there. The woman was NOT nice to me and very unorganized We would love to know where Gene went. He did a great job! and was so great to us!! !
Yes, it is critical we continue to get her out there. The cancer patient flights they told me to contact the makers of the med Lizzy is on to help. The lady I talk to told me they can not help because Elizabeth does not have cancer. I used the line its a "terminal disease" but no such luck either. Even though we do not think of it as that anymore even though it is. I did contact the makers of the med two years ago and they will not help. The company would not even give the dilution to Stanford in 2004 from pill to liquid and that is why the dilution is so unique. The pharmacist had to make the dilution on her own. So until DR.Wang is published it is not going to be revealed. They have noticed the pill form works much different than the liquid form these kids from the trial were are taking. One little guy(Type 2/3 ) quit walking for two years and then was on the med with in a month he was walking again. He is 10 now. He has been getting his med mixed in New York since Feb. Not Stanford.He no longer can STAND let alone walk. That is what I am afraid of. Lizzy losing her strength so fast. She has been on this drug since she was 8 months old and is truly a miracle. A lot of these kids with Type 1 like Lizzy that made it passed 2 can not even sit in a power chair and have to lay flat all the time. are trached or on a bipap 24/7 . Lizzy is the picture of HOPE to so many because she has done so well. She has given so many families inspiration and gave them power to fight.
Jacob is out of the hospital and my brother in law Jim seems to be doing better also.
Good thoughts to all of you!!

Good thoughts for us please !!we need them!!

We are feeling great after weeks of being sick!
Lizzy has a busy week this week. Easter Seals was Monday and she is finally done with one side but because of being sick and being over stretched we still have one foot still being serial casted . She is a +7 on her good side!!
Today we got Lizzy's Leopard TLSO today. It fits so good but boy has she grown since her last one!! We had a 4 hour MDA visit also today which was a great visit and everyone loves Lizzy !! We have two appts here tomorrow.
Lizzy is Ambassador again for the MDA for our area MDA (Peoria Area) So watch her on labor day week end!!
Bad news I hate to say but we so far can not get help with our fights to Stanford. Mercy Med flight can not help us. I am trying so hard right now and I have a pilot trying to help that is a great guy I emailed. Please pray something pops up or Lizzy will be off her med.
If we had only known we could of had fundraiser or something . Its totally consumed me trying to find resources to help us. So I have been talking on the phone or sending emails or researching since last Friday! We have to go to Stanford!!
Lizzy has to stay on the hydroxyurea ! I dont know if she will lose the strength she has if she is off of it.
Many hugs to all and hope you are enjoying the great weather this week.
Prayers for Jacob Goodson !! He is in the hospital again!! Prayers for My brother inlaw Jim who has been very ill!
Pray we find a way to CA for July and October.

Finally better

Lizzy is finally back to baseline !!! whooooo hooooo. She is doing pretty well. She is in her power chair a lot these days and I think that is great!! She is all over and getting to be a pro !!
The FSMA conference is next week and I feel so bad we are going to miss it because so many type 1 families are going to be there this year. I want to meet them and let them meet Lizzy!!
Lizzy is having issues with contractures in her elbows. She is having a hard time reaching to her mouth sometimes. Her legs are moving so well .I just am not understanding these contractures. I work with her all every day and stretch and massage her arms, legs , neck and back. I have her OT getting a adjustment for her arm brace so it doesnt bother her so much so she will wear it more. Serial casting is going great! Lizzy is neutral on one side and -8 on the other side so finally we are almost DONE!! She started out -22 on one foot and -37 on her bad foot so its worked!! Its just been hard driving to Peoria once a week to get her done.Gas prices are over 4.00 a gallon!! She got delayed because she had been sick and the ortho guy accidently over stretched her bad foot.
Well, I am hoping to get out side and enjoy some of that summer weather if it the sun will shine again.
Our Trip to CA to see DR.Wang is July 10 but.... I am afraid that Mercy Medical Airlift is not going to help us because we can not get them to answer our calls. I am freaken over this one. I pray they get us a flight. I know things are rough but Lizzy has to get out there to see DR.Wang or she will not get the med she needs.

Getting Better

Finally after 2 weeks Lizzy is starting to get better. She has been so sick with a virus that was the worst one I can ever remember. Its brutal.

I have been really sick also but I am just coughing at night still.

Lizzy was still plugging as of yesterday.

Today she has been doing great. She was out side today with Papa for a little while.

My life has changed so much over the past 4 years because of Lizzy. I thought I was done raising kids but then Lizzy entered my life.

She is such a wonderful kid and surprises me on a daily basis.



Living with SMA Type 1 is totally heart breaking and there are no guarantees these kids will survive but I do what-ever to takes to keep her precious life as happy and healthy as possible.

We have lost many kids to this disease and every time I think a piece of my heart dies when we lose one.

It makes me so mad when their parents have done everything possible for their child and they still lose them.

It makes me mad when some parent acts like they are the only one dealing with this disease and tries to bring so much attention to them selves. We all have it hard. Its not easy for any of us. We do not use nurses for Lizzy because its hard finding one that understands SMA.

I do what I do because I love Lizzy so much and try so hard to help others.
Well pray Lizzy continues to do better.
Hope you have a great week