Today was a doozy!

I let Asa sleep in this morning! I assumed he needed the extra rest. He had a big day on Tuesday and woke some during the night. So I let Asa sleep in this morning! Not gonna do that again! How many times have I said that?! I'll learn one day!

Sleeping in threw his feeds off. Because his feeds were off, his meds were off. These things aren't good to be off! Maybe he would have had an off day anyway but I feel responsible for it since I let things go.

We just don't have the luxury of getting up whenever we want to. Or eating whenever we want to. We need a routine, a schedule! Sure we have a little leeway but it is much smaller than I originally thought!

I keep thinking about school. I know, it is 6 months away but so many little ones have started recently that I can't help but wonder. What will happen if their schedule doesn't work with Asa's schedule? Asa's will have to change, I get that but it isn't as it seems!

And speaking of schedules, April is another GO month for appointments! We have 2 at Vandy next Friday and a hearing test on the 21st. We had a GI appt but I got a letter today saying that it had been moved to May and it was with a new doctor! Our GI is leaving Vandy. And they are closing the clinic they came to here at home! So now we get a new GI and have to travel again. I really, really loved that our GI came here once a month. Oh, well! Gotta roll with the changes!

It wasn't a total loss today though! Asa started riding his little car his OT let him use! He knew how to push the button and make it go but when he did this there was a jerk and noise and a lurch. He wasn't crazy about this. He'd do it once and then when I'd say "push the button" he'd just tap the button, not really wanting to push it.

Today I put him away from the back door, which he LOVES, and he had to push the button and make the car drive to the door! He did this 2 times!! If he'd get used to the jump and noise, he'd really love the freedom this Power Wheel gives him!! He could ride without anyone bugging him!!

Oh and he did some walking with me only holding him with the Walking Wings! This really makes him work on his own! Lots of hard work!!

Tomorrow he'll be up and on the pump at 8am SHARP!! Trust me!!

The non-post post

I wasn't gonna post today. I don't have any pictures and I know as entertaining and witty as I am, you only come by for the pics!!

But then I've just felt so blessed today. When I just think about that crowd from the race yesterday, I feel blessed. And maybe now there is less "mito what?" and more "I've heard of that". And then all of that money to be sent for support and research. Wow, just WOW!

And ya'll don't even know the story of Angie and Cindy, the organizers. They didn't know the Culley family. They met them at another fundraiser done in September, during mito awareness week. They had no obligation to do this event. They chose to give of themselves! And they are busy ladies with jobs and families and hobbies. Yet they spent months and months making this dream a reality. And it was so organized and planned out. There are so many sponsors listed on this shirt I'm wearing that I don't know how the printer managed! These ladies wouldn't take "no" for an answer when they approached these businesses. You don't meet people so willing to give of themselves these days. Angie and Cindy, you ROCK!!

And then my mom and dad and Lacy and Danilyn driving over an hour at 7am on a Saturday to walk with us! I mean, even I had thoughts of sleeping in!! And Lacy gets an extra cookie for getting her sweet peanut up and out after Danilyn kept her up so late! How great is my family!! God has blessed us beyond measure!

And then tonight, oh, tonight!

Asa was clingy to me and I was sitting on the couch with him watching Extreme Home Makeover. Asa was laying on the couch with his head in my lap and I was rubbing his hair. I realized he was doing these new hand motions. He had his hands up over his head and was kind waving them. It kinda looked like the motion we play when we did Patty Cake. I tried and tried to get Asa to play but he never would go past the clap and we kinda quit playing a while ago. So tonight, with him laying in my lap, I said "patty cake, patty cake, baker's man bake me cake as fast as you can". And he started clapping....no biggie, we knew he could do that. Then I added "roll it up, roll it up" and unexpectedly, he rolled it up!!! Just like I'd done so many times many months ago! Then I finished with "throw it in the pan" and he threw it! He threw it! He threw his arms in the air over his head!!! Just like he'd been doing when I first noticed!!

How crazy amazing is that?!!! Oh, there is so much in that simple game of patty cake! Do you see it?

He remembered a game we played for a long time and he couldn't do it!

He was playing the game on his own, in his head, before I ever started singing it!

He had the fine and gross motor skills, coordination and planning to play right along with my singing! There was a loooong time when he couldn't hold a simple rattle and raise his hands up. He still plays with toys with his feet because it is harder for him to get his hands and arms to cooperate.

Oh, such a simple game but such a WOW moment here! Who knows if he'll play again in the morning but it is back on the list of therapy play at home!!

And you know what tops it off....I posted on FB and had so many respond with cheers and "likes" that I was amazed again! Asa's cheerleaders ROCK!! I teased I was gonna start working on the Macarana next. Well, I was mostly teasing but if you see me being extra goofy and shaking my junk in my trunk then you'll know what is up!

The Amazing Race 2010

This is Asa's team!! My Mom and Dad came. Plus my cousin, Lacy and her sweetie, Danilyn. I thank them all so much for coming and supporting Asa and us!!



Meet the Loftins. Bryan, the little boy up high, has mito. His parents are Bo and Christine. Natalie is the little sister and Bradley is big bro!




And this is Jackson Culley and his mom, Emily! I didn't get a picture of his dad, John and big brother and sister, Wesley and Emily. They are a great family and the race was in honor of Jackson! Millington is his hometown and they sure do love some Jackson there!!




This was one of the most amazing things I've ever been a part of. They estimate that there was at least 500 people there today. Nearly 300 runners, plus us walkers and volunteers! The UMDF will be sent $18,500!!! And that is after expenses! Can you believe it?!! I was so excited when we pulled up and saw so many cars in the parking lot already. And then as we were getting out, they just kept coming in! If nothing else we got the word out about mito, don't you think!! The next run is scheduled for March 26, 2011!! Mark your calendars!! Maybe I'll run next year!

Asa did great today. It was windy and busy and he was great!! He showed off his stepping skills for everyone. He played on the blanket with Danilyn, Cade and Gracie. He had a good time! He had a rough spot late this afternoon but at least it was at home and not while we were out and about!





Thank you, Mrs. Margaret, for the reminder of that wonderful verse!! I keep telling people that I wasn't sure if we'd see Asa step or drink from a straw but just look at him now! I should not be surprised that God answers our prayers, the big ones or small ones. He only wants to bless us! He wants to pour out good things all over us. We just have to ask and believe that He'll do even more than we can imagine.

A little like the race today. Maybe we had hopes of 100 people and a $5000 donation. But look what happened! It rained on Friday and is supposed to rain on Sunday. But today was great! I don't believe in accidents. I don't believe in luck. I believe in God's blessings on our lives!! Praise God from whom all blessings flow!!!