Wow! Today was the Birthday Benefit for Megan. It was beautiful out and it all came together great. We were so lucky that it was only about 80 degrees. I had been worrying that if it was 90 like it usually is that Meg would have to go home. She did great today and she looked so pretty. The turn out was more than I expected. Everyone there truly wants to help and the donations reflected that. All the kids had such a good time. The boys loved the dunk tank and football throw and the girls hovered around the face paining, tattoos and hair wraps. My sister and mom along with Leah and Alex (my nephew's girlfriends) worked their butts off all day long and I must say I was quite impressed with all of their work. Luptons Barbeque donated all the food - hamburgers, hot dogs, ribs, chicken, sausage - way more than they were supposed to. I think Pat and I both feel awestruck at the support there is for Megan and our family. James and Ryan had a great time too. James was off with his friends doing whatever 13 year old boys do and Ryan played so hard he looked like he was going to fall on the ground.
I think we helped to raise a lot of awareness about Mitochondrial Diseases. I know I did not know what they were until it was in my house. The United Mito Disease Foundation does not support HBOT but that does not mean I am not behind them 100% in their fight to raise awareness and to help find a cure. I think James wants to do something to earn some funds for the UMDF. It is good for him in more than one way obviously.
I wish I had more time to post updates but the schedule is so tough and there just needs to be more hours in every day. Or I need a housekeeper. I dont want anyone else taking care of Meg except for short periods, but getting the everyday stuff done here is killing me. I have thought long and hard about this and have decided that would work - not a cleaning person that comes every 2 weeks, but someone to come 2 hours every day just to make beds, dishes, a load of laundry, you know - the stuff that piles up if you dont do it!!! For my next birthday I will wish for that - LOL!!!
Yesterday Meg had her photo done for the Dream Calendar. www.thedreamcalendar.com is the site. It will feature a special needs child each month and all the proceeds are going to help build an adaptive playground here locally. It was exciting to do this with her. It is something you dream of doing with a little girl. I dont think she has a modeling career in her future though - she threw up on the red tutu in the first 5 minutes and refused to smile - however 5 minutes after we were done she broke out in a big one????
I am having some urine testing done that will be processed in France and detects all kind of things that our tests here cant pick up as well and depending on those results we might start altering her diet some - maybe the GFCF - dont know yet but I definitely know that her system is sensitive to everything and it can't hurt to try - once again - nothing to lose!!!! Mayci in TN has been doing it and her mom says it is unbelievable - she also has a mitochondrial myopathy and just turned 8 this month too.
Seeing Megan turn 2 and tasting birthday cake for the first time and enjoy it was the best gift in the world. Looking back at her 1st birthday I can see how much has changed. Being so engrossed it is easy to lose sight of that, but last year she looked like she was in a coma and this year she did not know it was her birthday but she got excited at the singing and had a little smile on. I will post pictures - I am so bad at actually downloading them.
Have to go now, so tired my eyes are crossing. Praying that everyone sleeps good tonight and I can get a full night in.........or something like that.
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