Finally... we are done with our trips. Awwwwww.... we made it all summer with out too many complications. We have been from IL to Ohio and back. From IL to California and back, We have been from IL to close to Minnesota and back and two trips in less than a week to Madison. All safe trips and home safely. Only issues were my fall( I survived), Christen, Lizzy and I with allergies. I can actually say I am on a diet as of TODAY!! So, much great food over the summer we enjoyed traveling. We have been with so many great people also. I am glad I am finally home getting back in the swing of things again . A summer to remember. Lizzy had a blast.
Do you ever meet a family you just have to help? Its just an over whelming feeling that there is something you must do to help these people. I feel like I need to help as many families as I can all the time but this was quite an unusual feeling. We met a family at the Madison conf over the week-end that I had to offer to help them with a few things. It was like a something I had to do. With enough said we did help them and I feel we will be in contact with them more over time.
We got back yesterday from Madison. Lizzy had her yearly Muscle clinic visit. Her curve has not changed in 6 months!! No surgery yet(and the crowd roars). DR.Schroth said Lizzy is doing awesome. DR.Schroth is changing NOTHING except upping one med a bit because of weight gain.. Lizzy is doing great.
Gaining weight, healthy , Growing, no Respiratory issues. Life feels pretty good right now with Lizzy.
We are supposed to go to the MDA telethon in Peoria labor day week-end but this year we have to pay for our own motel rooms and at this time with Paul not working yet and we are barely getting by and all the travel this summer may go for a few hours on Monday. If we would of known before today we could of saved a bit of money for this event.
We are not quite understanding why there is no MDA fill the boot here this year. It seems since the reorganization/ merging areas together of The MDA sometimes its been hard to get out there to all the areas.
Lizzy needs new AFOs since she has grown so much recently.
We need to figure out a way to get her swim therapy(even it is paying out of my pocket), OT and PT. Any body have any ideas? Easter Seals will not return our calls in Bloomington, IL . We started calls AGAIN today to Easter Seals leaving messages. Lets see if they respond This time. Lizzy needs this badly. Our local hospital has no Peds OT and PT is here part-time and she is the one that dropped Lizzy because she said there is nothing else she can do for Lizzy. Lizzy will not have anything to do with her because Lizzy says she "Hurt her Heart."
Its almost Fall. Its been a great summer and basically illness free. One sinus infection for Lizzy in June and I think that is about it.
Any one know of any maintenance Mechanic Jobs please tell them about my husband with over 15 years experience!! WE will sell our house and move but not too far from DR.Schroth in Madison. IL Chicago and central IL is good place for us to move but we do not want to be to far from DR.Schroth as I said. Any where with in 100 or so miles of Madison,WI. He had a great work record and has a UAW journeyman card also. No one seems to want to hire him because of his age. That just sucks!!
We need insurance for him and I!! His meds are breaking us!! He needs a job badly!!
We met a newly diagnosed baby in Madison named Nora. She is 5 months and from Tennessee, She is so cute!! pictured above with her Mom.
Many prayers to all that need them .
We believe in miracles because we live with one!!
www.our-sma-angels.com/elizabeth
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