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