Celebrating Inchstones: The non-post post

Sunday, March 28, 2010

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!

2 comments:

Rose said...: It's amazing how much is wrapped up in a seemingly simple game of Patty Cake. Yay for Asa and the awesome day you had.; March 29, 2010 at 8:07 AM
gg said...: It seems Asa is doing something new on a daily basis!!!!

Playing Patty Cake is huge, but to be doing it on his own....WOW! It just proves he's been absorbing SO much around him, but is only now able to physically show off his mad skills - keep it up Asa!!!!; March 29, 2010 at 10:18 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!