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
          
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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!!!! 

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