Living with Spinal Muscular Atrophy - "Taking a deep breath and saying Oh yeah"

Congratulations to Sophia's Cure!!!  They were 1st in the Pepsi Challenge!!  Actually. its a great thing for Miracle for Madison  too as awesome as the Reed Family is!! They have funded the research at OSU for many years( from the start) and now this extra money will help them move forward even faster!! .I feel  great things happening in the SMA World this year!!!  Dr. Brian Kaspar, Dr. Arthur Burghes, and Dr. John Kissel are doing so much to help our kids. They are so close and have accomplished so much!! 
Vince and Catherine are such great people. I admire them for their diligence and undying effort to help so many kids! Whooooooo Hoooooooo  !!!!!
Thank you all that voted for them!! ` You helped the future of babies, children and adults with SMA!!

Its been a busy summer for us. So much going on. We have hardly been home. Its good to be taking a breather right now.

Caitlyn had her party a bit late this year. She had it yesterday. She had her friends come after the family gathering for a cookout and camped out . She had 5 girls come stay. What a dream to have a home on the lake with 100s of acres of timber then not too far from the house timber and a clearing to camp at. How fun is that for a child to live at.
Lizzy got very upset when we were leaving. She wanted to stay and she had tears rolling down her face because she wanted to stay in the tents too all night long. "Sigh" My heart ached for Lizzy. I myself had tears after that. So, trying to be as positive I could I said " Lizzy its too hot this time of year and we do not have your bipap  here so how about if we plane an over-night stay in the tents around your birthday? We came home and I held her for awhile. Then,  we played webkinz and just had " Nina and Lizzy" time. I have never gotten so emotional over something like this ever. My heart hurt for her but... she is a beautiful child with she has more strength than any other person I know. She is my hero and my heart. I told her just that.

We just got back from a fabulous visit with friends in Minnesota on Wed evening. Caitlyn went with us and she was a great kid the whole time.  It was better visit than you can imagine. Lizzy loves Drew,Ryan and Karlie too.  Just hanging out with another family that we have grown close to. We even got to see Andrea Doebbert and the girls also. Evie is so adorable.
We ate at the American Girl Store.  A dream come true!!  Lizzy had tears in her eyes driving away. Its sad we do not live closer.We need to do this more often!!
 I wish our house was handicapped accessible!! We would have people come stay here!! As, it is  now its dated, not easily maneuvered in a power chair and needs lots of work.

Lizzy is ready to pack up and go back to Minnesota. It was a much needed time away from home with another family. Caitlyn wants to go back but was afraid her family missed her too much but Dawn said last night she could go back.  This is what friendship is all about. Their house was perfect for Drew and the whole family.

We have decided to have a benefit for Elizabeth to raise funds for a Ford E150 van. It was perfect the one we rented for CA. The size was enough room for all Lizzy's machines, The portable ramp fit in it and does not fit in our caravan. Its is great on gas, the seating is  so comfortable . I could on and on. We can not get a loan right now because of Paul's unemployment, schooling and our low income. We have to do something. Lizzy is very uncomfortable in our van as of now. So,  a few friends of Christen' and Dawn are planning hopefully a benefit soon. We shall see. Buying this kind of van it would be so much cheaper than the conversion. You can buy a 2009 for about $17,000.00 but the 2005 conversion we were trying so hard to get was $33.000.00 with 40,000 miles . Which would make more sense? We have a manual lift that fits great in the E150 ( The lift will not fit in the van we have now) Then, later we can get the conversion with a raised roof but we do not need that for awhile.We have to do something quick though. Lizzy's back and hurting her because she is laying on the seat in the van( with her EZ on vest and its not working anymore. She needs MORE room!! I need more room!!

Elizabeth's seating system for her power chair just does not work for any more. Its too small. She is 13 inches too tall for it.   Elizabeth struggles trying to stay in it as long as she can. She went from every day in it to not much at all. It causes her pain and she pivots so badly.  She said it hurts her back and sides. We have changed DMEs for her chair. The guys that worked on her chair are charming enough but getting approvals to even have them look at the chair takes months. It is absolutely ridiculous. We have to travel 90 miles also to get it fixed or looked at. So, after deep consideration , looking at the pros and cons we have made the first step towards working with a guy we knew before . He had gotten Elizabeth kid kart from in the beginning and has worked with Easter Seals. We went with the MDA 's DME when we got her chair. BIG MISTAKE. Huge.. There have been a few times things have worked out but seriously now we are dealing with "Quality of life" issues now. To keep putting us off is WRONG. So, having given them several chances to treat Elizabeth like she should be treated they are now HISTORY.   I think they will be happy we are not a burden to them any longer.  You can only take so much you know and we have endured enough disappointments the past almost 4 years.

Oh, we have had a dandy time this summer so far. Its getting close to ending and went by way to fast.
Seeing kids from all over the country. Its amazing how different the care is. I myself think that doctors in the west need to research more on care of the SMA. DR. Wang understands yes and some of the doctors but many of the medical profession is  against some of the interventions we have learned that works.  Some-thing in wrong that we all do not care for the same disease the same way. Nutritionists out there seemed to be totally against the AA diet. Makes no sense at all .

I would love to win the Lotto ( I know wouldnt we all) and plan a Expo with all the PTS. RTS  OT , speech therapists tech people. wheel chair companies. equipment companies, dietitians, doctors, researchers , van dealers, architects, builders. Foundations that help with things for our kids and just all sorts of things that we can get to help these kids for quality of living. That all  know about type1s.
That is a dream of mine. I lay awake at night and think of things I would have. I would pay for all meals and motel costs and all everyone would have to do is pay for gas or plane trip to get there. Imagine all these people at the same place for 3-4 days. I would call it " The Excellent Elizabeth Expo"!!  I know I am a bit a "dreamer" maybe some day.

Lizzy is doing well and growing fast. She is just so beautiful.

Thank you for all the people that are in our life and shown us so much love!!
Many prayers for Sophia G, MJ, Mary, and all the kids having issues.

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

Living with Spinal Muscular Atrophy- Doing the Happy Dance

We get a  motor for the van !! It was approved from the Warranty company!!  Oh yeah!! Finally the news arrived this afternoon!! They said we should have our van back by Monday!! whooooo hoooooo yeeeeeah!!
That is some great news. We are doing the happy dance here. Thank you for the prayers!! They worked!!

We had a meeting with the people in charge of Lizzy's waiver program today. Kathy and Alica. They were very excited to see her and we talked about the CA trip and all we did among other things. How Lizzy went to a tea party that her friend Veronica had at the conference, how she made bears, went to a carnival, how much she loved seeing her friends and what a great time we had. Also, how Rachael was mean to her by pushing on her blood test mark. How she wanted to leave Rachael at a gas station on the way home.
Then, Lizzy told them where the conference will be next year and how she just had to go. She is so funny. Then we talked about school and how Lizzy was going to have teacher come to our house this year, thinking about a mattress that will turn her at night, getting a new seat or a new power chair which ever would be the smartest to do. It was a great visit today. We also talked about finding someone to help finish the uncompleted projects at the house. LOL They laughed at that one..... I guess its MOST men that have great intentions but do not follow through!!
Lizzy went and saw Linda tonight for her MFR therapy. So. she went to sleep VERY early tonight. We have swim therapy on Thursday.

We are supposed to go visit our friends in Minnesota next week. It looks like we are going hopefully!!
 Its been a busy summer.
Many prayers to our friends in need of prayers!!

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

Living with Spinal Muscular Atrophy - Still waiting, Hot Here and Just Getting Caught up

Picture above is my girls and their Paternal Grandmother Barb July 3 at the family reunion in Fairbury,IL for the Saathoff side.


Its has been so hot here this past week.  The humidity has been unbearable.

I have been thinking about the past six years. Wow, its been a whole change of life style. Learning what is close to my heart. Our first time flying on a plane was the trip Christen , Elizabeth and I to CA in June 2004. Never in my life had a had enough guts to fly until Elizabeth needed us to do so to find ways to help her. It was shortly after her diagnosis we found ourselves on a plane going to one of the top hospitals in the country to save our girl. Here we were clueless on what to expect. The first for a lot of things for us. Meeting DR.Wang and the staff and staying in California for the firt two weeks at the Ronald McDonald house seems like forever ago. DR. Wang help us so much!! He gave us hope when we had lost all hope.
Then,  in July we were in Madison.WI meeting with one of the top SMA doctors in the world DR.Mary Schroth. She helped save Elizabeth's life. Getting Lizzy on the NIV protocol then learning what we know today and practice as daily treatments every day. I remember how hard it was putting on the bipap mask. I remember how we could not get machines and had borrowed ones from two organizations. G-tube /nissen surgery, SUCTION.... Never knowing if Elizabeth would make it to the next day.  Well. here we are at Lizzy almost 7 years old and she is doing well!! I feel comfortable talking to so many parents. doctor, medical personnel and all I want to do is help so many people NOT go through what we did and help make their lives easier than ours was. If I can help just one family save their child my life like I have Lizzy's that would make me feel like I did something great.  Thank you God for saving my girl, keeping her healthy , making her who she is and changing my life. Thank you God for helping me getting to this point in my life. Thank you for all the special people you brought in my life.

Now, I can tell about this week.
Well ,we had all the oil changes receipts for the van and we had to wait for the Warranty company to show up. It took them till Thursday to show up. Well, they did and said everything was in order but... they were  coming back the next day to check the oil pan.  They NEVER showed up on Friday . So, I called and FINALLY got  a loaner. Its not the best vehicle but its a loaner. I don't think we will take it too far.Its a 136,000 miles on it and a Dodge Caravan and a 2000.
We pray they will  pay for the engine. We plan on keeping the the van now and not trading it in but.... we need a bigger van to be able to take Lizzy's power chair and her manual chair .  Lizzy uses the whole back seat to ride in the van of ours. Hoping to do a benefit in the near future to be able to get just a regular van. Paul and my credit was not approved because we do not have enough income between the two of us right now.That was a hit below the belt but its our reality. Paul graduates in October.Hope he gets a good job fast!!
We need to get this house accessible for Lizzy. I am having a bit trouble carrying Lizzy up and down stairs lately because she is getting so big This house is in need of a total update. I still have wall paper on my walls in some rooms!! I have not updated this house since the 1990s but we did paint the living room, some tile in the kitchen and our down stairs bathroom was updated last fall. . Paul finally fixed the hole in the ceiling from the plumbing problem last week and I have kitchen cupboards sitting in my dining room still waiting for the kitchen to be finished. I have new carpet all rolled up in there also and waiting to be put down. All great ideas but getting someone HERE to help is like pulling teeth. Paul gives a 1000s excuses WHY he can not........ grrrrr I wish I could do things like I used too. He also says we have no money to finish. What-ever......
Enough complaining. You know it took awhile to get my focus from just Elizabeth. That is why everything was put on hold. Now.... I am not able to do all I used to do.
Fifty-two used to seem so old to me. I do not feel old just a but rusty....I will be fifty-two in nine days. Caitlyn Grace and I share birthday.

Many prayers to the families that lost a child this week. Many prayers to all the families dealing with illnesses and many prayers to all the families living with SMA.

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

Living with SMA - Home finally

We rented a van for our CA trip.  Thank goodness we did since our van blew up a week ago here at home on Paul a week after we left. We would of been broken down on the road. I was against renting a van but I am glad that is the route we took. Somebody up there watches over us.

The long drive to CA and home was not as treacherous as last year. Is was not too bad.

Thank you for the two organizations that helped us get there!!! We could of not gotten there with out your help!!

Windy in Nevada and Nebraska but Christen did great driving that huge van.
Lizzy had no issues what so ever on the road.  Rachael did pretty good until about 8pm every night. Then, she would get cranky. Lizzy did really well on the road and the whole trip. it was a fun trip for all of us and a much needed get away.

DR.Wang's visit was great. He is always so impressed with Lizzy.
We got Lizzy a rolling book bag at the gift shop because of she bad time with the blood draw. Big Ol purple bruise she got during the blood draw.Where is our Noni when we need her? The (Neonatal Nurse from UW that gets aperfect stick every time)

We spent time with Andy and Molly and it was was great time just chatting to them and being around them. Excellent time. They treat us like family.

The FSMA  conference was amazing. Thank you FSMA for allowing us to attend.  We had  rooms on the first floor. Right around the corner from the front desk. It was great.
So, many people were so excited to meet Lizzy. We met families we have all met online and many new ones. Elizabeth felt like a celebrity  Many people stopped her and was talked to her. Even researchers from out of the country talked to Christen about Elizabeth. They were shocked on how well she manages her power chair.
Its is shocking the care of SMA Type 1s is so different.

DR. Wang's luncheon was great. I was VERY nervous because of an incident that happened with in seconds of the luncheon and my focus was not there.  It was so hard to speak with shaking the way I was. I wanted to say what "HEROs "these kids are for going through the studies and staying in the studies among other things. SMA has come a long way since 2004 when Elizabeth was diagnosed in the Midwest.  DR.Wang is very proud of Elizabeth and told everyone there at the luncheon how much he is. He mentioned how we always made it to see him some how even if we have to drive.  Thank you Hope and Light Foundation for the luncheon. It was very good. Thank you for helping fund his study also.

I am excited the UW dietitians Mary and Erin were at the conference!! It was great talking to them and seeing them.
It was great seeing Colleen , Mary B( Jenna's Mom) and many others.

Its was great to see Hayden, Veronica, Jacob,Roman and their families. All the kids it was great to see
It was great to talk to others from other countries and share what we do for Lizzy.
Elizabeth did not want to leave!!!  She wants to move there. She says it every time there is a conference.
The weather was Perfect.

We got home  last Thursday about 9pm. The reality about our van has set in. Its just so upsetting. We thought the warranty was going to work by because we can not find all the receipts for the oil changes it sounds like we will have to pay for a new one out of pocket. We were trying to get a new( used van ) and that fell through right before we left and have not heard a thing since.  Mine and Paul's income will not allow a loan at this time.  So, I guess we are GROUNDED. Elizabeth is so upset!! No van ....we can not go any where . I am afraid we will be kicked out of swim therapy and speech if we miss anymore sessions. I understand why Lizzy is so upset.
Now we get the figure out how to get a van. I don't think we need a handicapped one. A Ford E150 worked well on our trip to CA. We have a manual ramp that will not work in the Dodge Caravan.  Maybe we might win the lotto? I have no clue what we are going to do.  Pray for us to find a way. We travel so much for Lizzy's medical needs.

On a good note it sounds like the Gene therapy is going to help these kids( OSU).  Then, the kids on the Hydroxeurya have a 250% more chance of survival then kids that are not( From DR. Wang Study). Its seems to help Type 1s so much.
VPA and PBA were unfounded.

Many more pics I will put on my face book!!

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

Tragedy hits our family - Living with Spinal Muscular Atrophy

Very sad week for my grandson Reed. He lost a good friend this week . Reed is best friends with his brother Bryce.

Lizzy wants to send balloons to heaven for him after her funeral on Monday. We will light a candle for him and please light one too for him. 

Please add this family to your prayers and my grandson Reed.

Saunemin teen dies in Vermilion (  Pontiac Daily Leader) 

Randall Slown, 17, of Saunemin, who just completed his junior year at Pontiac Township High School, died after jumping from the Manville Bridge into the Vermilion River south of Streator Wednesday afternoon.
    The young man was with family and friends and had been jumping off the bridge located in Newtown Township, said Livingston County Coroner Michael P. Burke. Slown jumped from the bridge around 4 p.m. and failed to resurface.

(From Duffys Funeral home)

Randall L. Slown  

Feb,18,1993- June 9,2010

Age: 17

Residence: Saunemin, IL

Date/Place of Death: June 9, 2010 in rural Newtown Township, IL

Service: Monday, June 14, 2010 at 12:00 noon at the Saunemin Grade School, Saunemin, IL

Clergy: Pastor Kim Ernst

Visitation: Sunday, June 13, 2010 from 5-9 pm at Duffy Funeral Home, Pontiac, IL

Funeral Home: Duffy Funeral Home

Birth Date / Place: February 18, 1993 in Pontiac, IL

Parents: Joseph R. and Janie L. (Decker) Slown of Saunemin, IL

Brother(S): Thomas A. Slown of Indiana, Bryce T. Slown of Saunemin, IL

Sister(S): Shanie Slown, Hannah J. Slown of Saunemin, IL, Abra L. Melvin of OK, Katie Melvin of OK,Cassidy Hutton of Pontiac, IL

Grandparents: Linda Decker of Fairbury, IL Mary Slown of Pontiac, IL

Uncles: Louis Decker of Saunemin, IL

Aunts: Tess Slown of Bloomington, IL Georgia (John) DeLong of Roberts, IL Misty Decker of Missouri

Best friend: Mike Stoecklin of Saunemin, IL

Preceded by: Grandfather, Randall L. Slown

Organizations: Randall enjoyed playing basketball and cross country running and many other sports. He loved to spend time with his brother and his friends, and playing X-Box Live games. Randall was a big Dallas Cowboys fan.

Occupation: He worked at the Saunemin Fitness Center

Education: Randal would have been a senior at Pontiac High School.

Memorials: May be made in his name to the Saunemin Basketball Camp

" We believe in miracles because we live with one" 

www.our-sma-angels.com/elizabeth 

Living with Spinal Muscular Atrophy - Some fun, Very Busy and Disappointments

Last few weeks have been CRAZY busy.  The party for Reed and Rachael were this past weekend. They went well . Both kids got some"  fat cash"  Good for them. Lizzy had a blast!! She is so much fun!!

We have had Corbyn here a few days a week and that boy does not quick running. You call his name and he runs faster. Then, when he stops he sleeps. LOL . Too cute

We are getting kind of excited about our upcoming trip this next week. Driving to California again. We just did this 11 months ago. These new FAA guidelines have made it hard for us. No flying until Elizabeth gets the Triology Bipap/Vent.  Only problem now Paul was denied a low interest loan for a  used 2005 conversion van with a lift today and raised roof due to the fact he is on unemployment with out a co-signer. His credit is clean its because of his unemployment . He feels like he was hit in the gut. I am trying to be the co-signer and praying this works but I have not  much work history since I was hurt two weeks after Lizzy was born. Then I became Elizabeth's full time caregiver. The payment amount would not go up either. Christen basically pays for the van we have. Its is a Dodge Caravan that is NOT handicapped accessible. Lizzy has gotten so big its hard to travel with her one bench seat. She has to lay pretty flat to travel. We can not find a manual lift that will fit the caravan that will fit with her power chair and equipment.  I get paid now from Lizzy's home base waiver  program 75 hours a month to help out. Its buys some of the supplements she needs, some gas, groceries and I did pay for her MFR until a few months ago that was 65.00 a week. It gave me a sense of worth finally having some money I control. I pay some bills also. It makes me feel ashamed some-times t  get paid to care for her but with Paul losing his job last year it comes in handy. I was told by her people that monitor this program for her I deserve to get paid. We need this van so bad. Christen and I can not lift the power chair together anymore. To be able to have this would make her quality of living so much better. To be able to take Lizzy myself places would be a dream. I could put her in our chair behind me and we would go to the park and shopping in town !!  It would help my quality of living also. She deserves this so much. We could take her  power chair every where we go. Her waiver program will pay for the lift and raised roof we just have to pay for the van.
Please say a little prayer for us to get this. I do not usually pray for such things as a van but as I said she so deserves this so much. If we do not get it then it was not meant to be I guess,

We found out our local doctor will be retiring here soon. That as a blow also. Who will we go to locally? No one will treat us as he does. Its sad and it hurts knowing this is happening before long.

Prayers for MJ. My gosh she has been so sick .
Prayers for Krista as she has been sick and our friend Drew.
Prayers for us to get to California safely and home safely.

Prayers for the Families that were hit by the tornadoes this past week-end.
 http://www.freakygossip.com/2010/06/streator-il-tornado-news-pictures-video-updates/


"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
          
Please Vote !! Help save babies , kids and adults with SMA!!
http://www.refresheverything.com/sophiascure

SMA Families!!  Please fill out this survey!! www.smaandnutrition.org  You can only fill out the survey!! It can help so many get proper  Nutrition for these kids and help them so much!! 

Anticipation for CA Road trip, New Moves and Lots of Running - Living with Spinal Muscular Atrophy

Our road trip is planned . ( The song coming to mind "On the Road Again.") We are leaving earlier than expected because Paul is not going with us so its Christen, Lizzy Rachael and I . Taking each day at a time. Lizzy has an appt at Stanford on Tuesday June 22 so we have to be in Palo Alto on that Monday Night. The anticipation has Lizzy just talking non stop!!  She wants to see Molly , Andy, Hayden, Veronica, the ladies at the motel we stay at in Palo Alto, DR. Wang and all the kids and the conference. She is just thrilled to be doing this again.She has been asking SO MANY questions!!

I have an awesome update on Lizzy:  Today, Christen got her some Biscuits and Gravy from the local Micky Ds. We get her something every time we get something. Well,  today Caitlyn was here and I was giving Lizzy a " taste". Lizzy said " No No I want to do  it MYSELF!" I said "Okay" She picked up the plastic and stuck it right in some gravy and got her own taste!!!! Oh my gosh I was stunned..... Christen was standing there and I said "Look at Lizzy!!"She stopped and starred in amazement as speechless as I was. Lizzy was laying on her side and doing this. Lizzy did this until she was done. I swear this is true!!  Oh my. Elizabeth never stops shocking me. Is this not awesome?? I believe its the Organic India Turmeric I am using in her diet that has helped her this time. She has had this supplement in her diet for a few months now.  She has not done much range this in a long time. She plays her nintendo ds but she has not done this a a long while. Her knees have not been tight in a long time.

Elizabeth had her MFR therapy this afternoon and Linda worked on her mouth. She was actually opening her mouth wider after!!! This is so great. She also had skinny arms forever well today I was looking at her and put a tank top on her and her arms are filled out for the first time since she was a baby. I thank God every night for her strength and for keeping her doing well.  I am so proud of her. 

The last few weeks have been so busy and I suffered  with a few migraines to add to the busy time. We had two Graduations, two appts, a recital and a family get together at my Dad's. This week we have 3 appts and two parties to go to. Then.we leave soon. I do not like all this running but its things we have to do. 

Many prayers for Nick Lockwood he is in the hospital sick, Emma Lockwood is having tummy trouble,  MJ she is in the hospital  very sick, Sophia Gaynor( teething like crazy), Stella and for us for our upcoming trip.

" We believe in miracles because we live with one" 

www.our-sma-angels.com/elizabeth 

PLEASE VOTE IN JUNE!!!  WE NEED YOUR VOTE!!!! 

http://www.refresheverything.com/sophiascure