Update (Spinal Muscular Atrophy)

Pics above are Reed Michael and a picture his Mom Dana(My oldest daughter)

Few things to update about. Reed's birthday party was last night. Sad, he loses his license for 4 months as of today!!!!!! He forgot his court date and they revoked his license. Happy Birthday Reed Michael from the Sec of State of IL.
My son in law( Reed's Step-father) seemed to be very distant towards me at the party. Not sure what is going on there. My daughter Dana seems to be doing well these days and much more happier which is a great thing.

Now the kicker.... we will not be going to the MDA Telethon in Peoria this year. First, time in three years. After figuring bills and looking at what is due we just do not have the money for two motels rooms at this time. Its sad... Lizzy is let down but we are facing bad times right now and we just can not do it. we were gone a lot this summer also. Lizzy said she will miss the WMBD guys like Bob and Chuck. I will not miss doing the live interview though( I get all shaky doing that) I will miss all the WMBD guys though as Lizzy. They are so great to her. So, Lizzy is going get to see the Thresherman's reunion parade here on Sunday for the first time in three years and possibly be in it. We are usually getting ready and driving to Peoria to the Paradice Motel for the telethon when the parade is going on. She was asked recently to ride in it.
I have been very emotional lately according to my family. Not knowing what is going on with me but these crazy allergies and not been able to hear in my left ear for three weeks now. I have had sinus crude since we went to CA. Its been a month ago you would think I would get this over with!! Then all the craziness of coming home uppacking, then packing again, not sleeping, everyone leaving me and Lizzy home alone or no way to leave. The fall in CA didnt help over Lizzy's power chair because I went through a lot of pain over that. Then, the fact my oldest grand-son is 18 and now a man.... well that is enough to make any woman emotional. Then, Paul with no job and we have no insurance hmmmm maybe just a lot going on wouldn't you think? I believe the change went on a few years back. My hot flashes are gone so.... so much for blaming the change of life people!!

The good thing is Lizzy is doing great!!
Prayers to all that need them.

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

Feeling old and proud ( Spinal Muscular Atrophy)

This week-end has been quiet. Not much going on here except later today my oldest grand-son's 18th birthday party is around 6pm . I was 33 years old when he was born and it seems like yesterday he was born. To see him now it feels like a dream. Where has the time gone? I seem I turned around and he was a young man. He lived with us for the first 4 years of his life. He was the boy I never had. Christen and Jess say he is like a brother to them and was raised with them. His "sperm donor" (Biological Father) never had much to do with him and its sad. He is a great kid and turned out pretty well. We always made sure he had what he needed growing up. I am very proud of him. He is going into Criminal Justice when he finishes school this year. Go figure. That was my major in college. He has not got into any trouble except speeding tickets. The song by Alice Cooper come to mind " Eight-teen" . I remember singing that when I was 15 and 16 wishing I was 18. I think I wanted to get old too fast and never let myself be a kid. I was married at 16. Shocking isn't it? I also got my GED and went to college when my kids were young. I did it though. It was something I needed to do for myself.

I had Robbie(12) and Rachael (13) here yesterday. Talk about attitudes.... Did I act like that when I was that age? Well... Mom says I was worse. I have always had an opinion and if that is a attitude then yep I guess I did.
Lizzy watched the New Hannah Montana movie 5 times yesterday. She looooooooved it. I have to admit it was pretty good. Then today she has been watching High school Musical 1&2. She loves those movies also.

Its been a very good summer in general. Lizzy has been healthy , is getting older and she also has opinions. Its been strange having my husband around. He has aged so much this year. I guess its all the worrying about losing his job and not being able to get one. I looked at him really heard recently and I could not believe how old he is looking. I am sure I am also. We both seem to have many aches, pains and no patience. Its been great to have him home helping with Lizzy. But.... it would be nice to be able to watch TV again. He is attached to the remote.

I am getting ready to start Lizzy on home schooling next week. She wants to learn so much. It will be great to be able to do this at home. She is fun to teach.
Now getting all her other things she needs like PT/OT Swim therapy I will be working on this week. Some way some how I will get this done.
A bit over 5 years ago I was worried about how to keep Lizzy alive and now Its I worrying about getting her home school etc. How life changes. I dont know how I got here but I thank God I am here instead of then. I thank God for all my friends I have met on this journey.

Happy birthday Charlie!!! We love you!!

Prayers to all those that need them!!

"We Believe in miracles because we live with one."

www.our-sma-angels.com/elizabeth

We had a great busy summer (Spinal Muscular Atrophy)

Finally... we are done with our trips. Awwwwww.... we made it all summer with out too many complications. We have been from IL to Ohio and back. From IL to California and back, We have been from IL to close to Minnesota and back and two trips in less than a week to Madison. All safe trips and home safely. Only issues were my fall( I survived), Christen, Lizzy and I with allergies. I can actually say I am on a diet as of TODAY!! So, much great food over the summer we enjoyed traveling. We have been with so many great people also. I am glad I am finally home getting back in the swing of things again . A summer to remember. Lizzy had a blast.

Do you ever meet a family you just have to help? Its just an over whelming feeling that there is something you must do to help these people. I feel like I need to help as many families as I can all the time but this was quite an unusual feeling. We met a family at the Madison conf over the week-end that I had to offer to help them with a few things. It was like a something I had to do. With enough said we did help them and I feel we will be in contact with them more over time.

We got back yesterday from Madison. Lizzy had her yearly Muscle clinic visit. Her curve has not changed in 6 months!! No surgery yet(and the crowd roars). DR.Schroth said Lizzy is doing awesome. DR.Schroth is changing NOTHING except upping one med a bit because of weight gain.. Lizzy is doing great.
Gaining weight, healthy , Growing, no Respiratory issues. Life feels pretty good right now with Lizzy.

We are supposed to go to the MDA telethon in Peoria labor day week-end but this year we have to pay for our own motel rooms and at this time with Paul not working yet and we are barely getting by and all the travel this summer may go for a few hours on Monday. If we would of known before today we could of saved a bit of money for this event.
We are not quite understanding why there is no MDA fill the boot here this year. It seems since the reorganization/ merging areas together of The MDA sometimes its been hard to get out there to all the areas.

Lizzy needs new AFOs since she has grown so much recently.
We need to figure out a way to get her swim therapy(even it is paying out of my pocket), OT and PT. Any body have any ideas? Easter Seals will not return our calls in Bloomington, IL . We started calls AGAIN today to Easter Seals leaving messages. Lets see if they respond This time. Lizzy needs this badly. Our local hospital has no Peds OT and PT is here part-time and she is the one that dropped Lizzy because she said there is nothing else she can do for Lizzy. Lizzy will not have anything to do with her because Lizzy says she "Hurt her Heart."

Its almost Fall. Its been a great summer and basically illness free. One sinus infection for Lizzy in June and I think that is about it.

Any one know of any maintenance Mechanic Jobs please tell them about my husband with over 15 years experience!! WE will sell our house and move but not too far from DR.Schroth in Madison. IL Chicago and central IL is good place for us to move but we do not want to be to far from DR.Schroth as I said. Any where with in 100 or so miles of Madison,WI. He had a great work record and has a UAW journeyman card also. No one seems to want to hire him because of his age. That just sucks!!
We need insurance for him and I!! His meds are breaking us!! He needs a job badly!!

We met a newly diagnosed baby in Madison named Nora. She is 5 months and from Tennessee, She is so cute!! pictured above with her Mom.

Many prayers to all that need them .
We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

On the Go Again (Spinal Muscular Atrophy)

We just got back home from Madison,WI. It was a good trip. I did not learn a whole lot as I already know a lot of what was talked about It was great meeting other families and seeing some of the ones we have met before but not seen in a long while.
I loved finally meeting Barb (Drew's grandmother). I just wish we could of spent more time together. We met Drew's Mom and Nanny too.

I was interested in the PT/OT a lot. We need to get Elizabeth back in to swim therapy but.... how? Our PT dropped Lizzy and we have no other place with a private pool we can use. Very Frustrating to live my life sometimes. We have to figure out another option as we have exhausted all we had. I can talk more to them on our visit to Madison this week maybe they can help us figure this out.

We are getting ready for another trip to Madison for Lizzy's Muscle clinic visit. We will be there all day on WED. I am worried about Lizzy shoulder blade but I think once I get her back into swim therapy it will do better as before.

My ears still feel like I am UNDER water. Darn allergies any way.

I have lots to do before tomorrow but thought I would quickly update.

I had a letter from Ben(Lizzy's first crush - counselor from CCK) and Lizzy was is inspiration to decide to become a doctor. He is working with DR.Brenda Wong in Ohio. Reading his letter made me cry. It touched my heart so much. I am glad he sees what I see in Lizzy. Her determination to do what ever it takes to fight this disease and to be happy. She is always smiling. I forgot tell him Lizzy wants to be a doctor too. I am sure she will.

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

For my friend Vince I am posting this for him from face-book




Ride for Sophia's Cure
Knock Out SMA
Host: www.nomorefootprints.com
Type: Causes - Fundraiser
Network: Global
Start Time: Tuesday, September 15, 2009 at 2:50am
End Time: Thursday, November 12, 2009 at 5:50am
Location: Wantagh, NY - Irvine, CA
Phone: 5162140348
Email: sophiascure@aol.com

DescriptionThree men from Long Island, NY are going to ride bicycles from Wantagh, NY to Irvine, CA to raise funds and awareness for SMA, the leading genetic killer of children under age 2. They were inspired by the story of Sophia Gaynor from Wantagh, NY who has the most severe form for SMA and her parents quest to find a cure for this dreadful disease. They are going to ride their bikes for over 3500 miles to try to put an end to SMA.

We are not asking people to physically attend this bike ride, but to show support for Ryan, Mike & Dennis's efforts and make a donation. Your donation is tax deductible.

They will be travelling in the following cities:
Wantagh, NY
Philadeplphia, PA
Baltimore, MD
Washington D.C.
Winchester, VA
Athens, OH
Cincinnati, OH
Seymour, IN
Washington, IN
Salem, MO
St. Louis, MO
Jefferson City, MO
Sedalia, MO
Overland Park, KS
Newton, KS
Dodge City, KS
Lamar, CO
Pueblo, CO
Salida, CO
Gunnison, CO
Delta, CO
Grand Junction, CO
Green River, UT
Nephi, UT
Delta, UT
Ely, NV
Tonopah, NV
Henderson Park, NV
Death Valley National Park, CA
Dunmovin, CA
Johannesburg, CA
San Bernardino, CA
Irvine, CA

To make a donation to this ride please visit: http://www.fsma.org/index.cfm?ID=4535&TYPE=1392

For additional information on how to make a donation please contact Vincent & Catherine at sophiascure@aol.com.

If you are interested in volunteering to assist the bike riders in any way, please contact Debbie at greaterny@fsma.org.

Miracles do happen...let's make one.

Faith Lodge ( Spinal Muscular Atrophy Type 1 )

This is SMA awareness Month.

What better place to find hope than Faith Lodge http://www.faithslodge.org/

We ourselves did not think we would be able to go to Faith Lodge this year but pulling resources together for this special week-end was something we just had to do. It has been really crazy around here this summer with all the things we have had to do. There were a few families unable to come back this year. The Kuesters and the Doebberts. We did miss them. This special time was something we just had to do. For ourselves as well as the kids. So, we found a way to go this year. We took off last WED with everything ready to go and off we went on our 8 hour trip(according to map quest) to Faith Lodge. Let me tell you though..... its more like 10-12 hours because of the Dell's traffic. We were doing pretty good time and these two semis had us pinned in between them for about 10 miles. With encouragement from her father (since he had to pee like a "rushing race horse") to get out of that situation. Christen finally got a chance to pass and had to speed up to get around these truckers who were messing with her. . Well, hid behind some bushes on the highway was Wisconsin's finest trying to catch a out of state speed violator.... Well, he did.... Christen. First, ticket she has gotten since she was 16 years old. He got her good. The ticket is over $200.00!! No mercy in Wisconsin so BEWARE!! So, we got behind but arrived at Faith Lodge before dark. We were welcomed by Katie Poole and Tammy McDanel.

Faith Lodge is a place where you can just relax. The feeling you get when you walk in the lodge is inner peace. No other way to describe it. Peace... Our minds and bodies seem to never get enough rest we are always going. It was so great having no agenda. We all in our every day lives have schedules and on this stay we had none. Sleep as late as you want, Stay up as late do what ever you want. Take a walk, Cry together, do a puzzle, do crafts, make Tye dyed T-shirts, make necklaces etc. Paint a bird house. Its just amazing how the place makes you feel a part of it.

We all got together every evening for dinner. Just talking to other families and sharing our lives is so great. We got to take our time and do what ever. The kids all loved being together. We could suction at the dinner table and it was OK!!

Unfortunately, Avery Poole was not feeling so well. Cory (Her Dad) took her home on Saturday. She was probably over tired and ate too much . She was fine the next day I hear. We missed Cory and Avery both very much.

Mary Kate is such a neat kid. We just love her. She kept asking Lizzy if she could laugh and Lizzy would roar laughing. Like ,Lizzy you NEVER know what Mary Kate will say next. Mary Kate is going to get a IPV soon so was asking Lizzy her opinion on the IPV. Mary Kate watch Lizzy do the IPV and ask Lizzy if she likes it and Lizzy said "Yes, it helps her so much." Hmmm interesting huh from a little stinker like Lizzy that fights me ever once in awhile because she says she doesnt need it.

We met Katie Poole parents Just great people. We loved them. Katie's Mom Sandy cooked a two HUGE dinners. Lasagna one night and the next a Huge cook-out with everything you could imagine that tasted so great.

Aubrey Poole was the youngest child there.She is too cute and little. She is 2 years old. Lizzy was using a toothette and cleaning her mouth out!!

The Doebberts were unable to make it this year but Andrea's Mom (Judy) and her Dad (Bill) popped in. It was great to see them. They feel like family to my family and we just love them also.
We had two campfires and Lizzy discovered smores. She was say " Uhhhh theeeeeeeese are just soooooooo good" and kept moaning the whole time she was licking them. "Oh my gosh she said I NEED more!"

It was great to see everyone. It seems most of the kids seem stronger and healthier this year.

The Kays drove from Kentucky again this year. Julia looked great. Rachael just loves Holly and Maria besides she said Julia is just like Lizzy. All the kids seem to be "sassy" !!

It was good to see Tammy, Todd and Brianna McDanel from IL also. They had Madizon Tammy's 13 year old niece with them.

Lizzy loves Jerika. Jerika and Jen came with a friend they met when Jerika got her dog. Peg from Boston. She has Spinal Bifida.

I could go on and on but seeing some of our friends again and spending quality time with them was great. Seeing the kids interact was priceless.

"Its a place where HOPE grows. "

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