Celebrating Inchstones: Champions!!!

Saturday, February 27, 2010

Champions!!!

Gracie's basketball team came in first place in the tournament. Now I should mention that it is a church league with only 4 teams, not the Olympics! But their team didn't win a single game until the last one. Then they won both tournament games!!

It was hard fought too. The other team would lead by 2. Then we'd get ahead. Then it'd be tied. It went into a 3 min. overtime. Then, with 3 seconds left, there was a mix up and the game was stopped. The clock was reset and the other team threw the ball back in. ACK, the nerves! They threw a shot up but missed and Gracie's team won by 2 points!!! I was hoarse from cheering!!

And Cade decided to play baseball. I hope this is a good thing!! I'm not gonna spend the whole season forcing him to go to practice. I think he was holding out for us to bribe him. He needed a new glove and batting helmet. We set a limit and I think he was waiting for us to get him the "good" stuff before he signed up. Well, we won that battle! Several people told us today that they were sad when they heard Cade wasn't playing! I think it made him feel proud to know people wanted him to play! Anna actually gave him a pep talk, encouraging him to play! And she HATES the ball field. I was very proud of her for putting her own interest aside and being an encourager!

We came home and Gracie tried on her old cleats. She came out of her room with only one on. I asked if they fit, did she need new cleats. Her response.....I only need one, I found this one! LOL!!! Then she tried on Cade's old pair. Again she could only find one, and it was the same foot! We tried to tell her to wear one pink, low one and one black, high one! She didn't think that was a good idea!!

I'm so excited for baseball to start back up! I know, I'll be regretting that in a few short weeks. If Asa could handle the basketball game, I'm hoping he can handle the baseball this year! I saw a neat umbrella thing at Dick's today. It looked like a huge umbrella or half a tent. It said it just popped up and then you were shaded and comfy! Of course it cost $70!!! I'm getting ready to google and see if I can find a better deal!!

Asa had one reflux episode. Well, I'm guessing that is what happened. He was with Anna and we were watching Gracie's game but best I could tell it was reflux related. And he was tired! He didn't eat the Cream of Wheat this morning. He did eat cheerios though. And he fussed when we started the pump in the car until Barry opened the container of cheerios. Maybe he wants to be more oral but doesn't like the choices! Anyway, today was the best tummy day we've had in a while!!

And this is your last chance to sign up for the Mito What? 5K and be guaranteed a shirt and goodie bag!! It is gonna be awesome!!! It is in Millington TN on March 27th!! Almost 250 have signed up!!!

1 comment:

Christy said...: Love the toothless grin! WTG!!; February 28, 2010 at 4:25 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!