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