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
          
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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

Update, Graduation and Upcoming June adventure - Living with Spinal Muscular Atrophy

                                                                

Lizzy is not happy in Pic#2 s . She did not want her picture taken.
I have been trying to write this since Last week.   Its been busy around here. Lizzy is getting over a sinus infection.  She actually told me she had one. She is doing okay. Sassy as ever!! Corbyn is here every week for a day or two and Boy is he BUSY!!! Reminds me of Reed Michael at that age!!

Reed Michael graduated last Friday night....
 ( Taking a deep breath and thinking where did the last 18 years go?). He was my boy I never had . He is the grand child that started calling me "Nina" . I was 33 and a grandmother. Yeah.... 33 !!  We helped raised him. His Mom Dana was 15 years old when she give birth to him. The day we found out she was pregnant I gave her two options . She would  raise baby with my help until she was able to do it on her own or her Dad and I raise the baby. No abortion ,no adoption. Plain and simple.  This baby was blood and he was staying with us.  No matter what his "sperm donor" wanted or his parents.  These were the only choices that were offered my daughter by her father and I . After all Dana was only 15.  She also does not believe in abortion.
 He was a great kid. He was raised with my other kids.  Dawn, Christen and Jess say  he is like their little brother.   We all  made sure he was always taken care of.
Dana got her GED, worked at Wal-mart at age 16 and continues to work there and is in training for Assistant Manager . She did a good job with him.
Reed will be going into the National Guard in June. I miss my boy. I have not seen much of him since he turned into a teenager. Good luck to my boy you are my heart just like my other grand kids.

Rachael graduates from 8th grade tomorrow. Watch out world Rachael will be in high school. Four more year and she will be leaving also *sigh* where does the time go. This is a old pic of Rachael. She never sits still long enough to get her pic taken.

Less than a month we will be on the road to CA. I guess its just Christen. Lizzy and I this time as Jessica has backed out because she says she will be going to school. She was laid off last month. Rachael may go but her Dad is the person with the final say I guess. She will keep Lizzy occupied and the experience would be good for her but.... the question is. Will it be okay for my sanity?  We shall see won't we?

Elizabeth has been doing well on the Organic India Turmeric. It is so amazing how well it has done on the Lizzy's contractures behind her knees. Lizzy is only on 1 cap 350mg a day in her food mixture. No side effects what so ever.

Elizabeth's New bipap/Vent is waiting for NEW prior approval.  Our DME here denied it after it was approved  by insurance. So, we have a new DME working on it.

Elizabeth is quite excited about the upcoming calendar of summer events we are having. The trip to CA. She loves to travel. She will get to see Molly and Andy our dear friends. Spend time with her friends and meet some new ones. She is super excited about Rachael maybe going.
DR Wang will be PUBLISHED!! We love seeing friends at the conference.

She needs a new seat in her power chair. She has had a HUGE growth spurt and It seems not to fit her anymore. The Koala is a great little chair but the seat its too small for her. Not sure what to do about this one. I have contacted the vendors we have for her chair so we shall see.  I do not think we could get insurance to approve a new seat or chair. I have to do some research on this one.

Many prayers to Gaynor Family. Catherine's grandfather passed.
Many prayers to MJ and all the sick kiddos out there.
Prayers for us please on our upcoming road trip to CA!!

Thank you for every one that has been a part of our lives!!

If we ALL work together we can help save so many kids!!!

"We believe in miracles because we live with one!"

www.our- sma-angels.com/elizabeth
http://www.refresheverything.com/sophiascure Please Vote!!!
I was send this info below and thought I would share this. Very interesting!!

You may have seen that the government recently released its annual report on the quality of health care Americans receive. While there have been some improvements, the news was not positive:  hospitals still have work to do to put an end to the ongoing, but very solvable, problem of patients acquiring life-threatening infections in hospitals.

Patients, their caregivers, and health care professionals need to educate themselves on the dangers and what can be done to protect people from getting sick while in the very place they went in order to get well.

To help achieve that, Kimblery-Clark Healthcare has put together a website called "Not on My Watch" at www.haiwatch.com to educate patients and health care professionals. Their goal is to eliminate these preventable illnesses and their often tragic consequences.

I hope you will help in this effort, too, by informing the readers of Lizzy's Page - Living With Spinal Muscular Atrophy about how they can learn more about protecting patients from preventable hospital infections. I've created a useful site that you're welcome to check out and grab resources from:

http://haiwatchnews.com

Six years ago May 11 - Living with Spinal Muscular Atrophy

Six years ago tomorrow was a day that changed our lives forever. We could not understand how a beautiful baby was handed a death sentence from a neurologist that did not believe in compassion. He was cold ,cruel and gave us no hope for the future with Elizabeth in it.  She was not supposed to live to be two years old and lucky if she reached a year according to the neurologist. His advice was " Take her home and love her because there was NOTHING he could do for her" .

My husband and I never gave up on Elizabeth we knew we had to fight for our grand baby with every breath it took.  My dear Aunt Ginny that passed a few years back said to me" Jeanna, you are the strongest person I know you will find something to help Elizabeth . I believe in you"   That is all it took besides divine intervention. That small piece of advice has started us through our journey fighting for Lizzy. We had to convince her mom not to give up. With the help of DR.Wang, DR.Schroth   DR. Hough, many caregivers and parents we are six years away from that most devastating day. I do not know how one doctor could tear your heart out with words but he did.

Its okay now though the this day does not hurt anymore. Lizzy is thriving and doing so well!!

We have met so many wonderful people on our journey that began almost 6 years ago. We have learned to have, HOPE, faith and patience.

My great grandmother was a mid wife and I think sometimes I inherited some of her talents in healing and helping others. I knew I could help Lizzy. I knew I had to. I guess its sort of an Intuition. Intuition can be said to be a comprehensive grip of the principles of universality. I sense many things.  I sensed Elizabeth would survive and beat her odds. She is our miracle. She is our gift.


Thank you Laura Stants for being my sounding board, my fountain of info ,helping us get what we needed for Elizabeth in the first years and being my friend since. You help save her life with letting us borrow the v-pap and humidifier when were unable to get her the equipment here for Elizabeth. Thank you to DR.Schroth for teaching us what we needed to learn to get us where Elizabeth is at today. You go above and beyond any doctor I have ever known . You take your job personally. 
DR.Wang thank you for accepting Elizabeth in your trial. She never had movement in her legs until you.
DR. Hough thank you for being there for us and believing in us. 
Thank you for all the parents/care-givers that send me the supplies  or swap me supplies I need to keep Lizzy healthy!!!!!!
Thank you Mary for all your help teaching me about diet.  you too Steph 
Thank you Colleen for all you have done for Elizabeth.
Thank you to all my friends for being there for us and believing in us!!
Thank you to the organizations that help us get  what we need to keep Elizabeth thriving and doing well when we are not able to. 


Elizabeth says "She loves herself" that alone says so much.


I posted today, as tomorrow I want to just sit around and hold my girl all day. I love her so very much!!


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


http://www.refresheverything.com/sophiascure

It Gets Better Right? - Living with Spinal Muscular Atrophy

Its been a crazy last few weeks.  We went to CCK and as usual Lizzy loved it!! We got through the stomach flu . Never had dealt with that before with Lizzy but I got her through it.  Lizzy was denied the new Trilogy bipap/vent from Apria but approved by her insurance. Strange huh? How can you be approved by your insurance to get a vital piece of equipment and then your home care equipment provider deny it. Hmmm... How can that be?

We got back on track with Lizzy. Then, today she threw a plug. I knew something was up all night last night but she kept giving me excuses why she why her o2 was sating lower than normal. Not bad but not her norm. So, I upped her treatments today.  I will be going with my intuition next time, the little stinker.  She is learning to manipulate me I think.... but I think that is changing like NOW.

Saturday, Elizabeth was all excited the carnival was here and she got to go with her Mom and Dad.
Paul had come home from Dawn's house after doing some yard work not feeling well. Christen and I both asked him if he needed something to eat. He said "No, he was sick to his stomach, his fingers were numb and needed to lay down. He said" he feels like he has the flu." Which I thought was strange because the flu had been out of the house after we totally disinfected it and the incubation period is 48 hours.  Well. Christen and I checked on him and fine the first few times. Then, I went in his room checked on him and was non responsive.  I called Christen back home. She ran home. Brandon had Lizzy and then took her next door.  Lizzy saw the ambulance and was  worried . Christen called 911. With out adding all the drama of the day I will add the man was near death or a diabetic coma. His blood sugar was 19 . I had given him sugar on my finger under his tongue before that. I aged about 10 years that night.  He refused to go to the hospital . I will not go into all the details but tonight his sugar went to 39..... I am calling the doctor in the morning and when he gets home from school he will be going to the doctor. If I have to hire some big ol bikers to carry his ass!   Something is just not right. I just woke him up a few minutes ago and made him eat a peanut butter sandwich. This is really scaring me. He is such a stubborn man and he did not have the flu.
I am not up to all this. What is going on and why now? Is it just a adjustment or is it something worse?

Trying to raise funds for Stanford visit in June for the travel. Thought we had something in the works but not sure now.

Hopefully things will resolve soon!!!

Many prayers for Madison, Stella , Drew and all the kids needing extra prayers

Extra Prayers for my Husband Paul and me too.... (so I can stop stressing so much!! )

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


Please keep voting daily in the Pepsi Refresh project for Sophia's Cure.     
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