Celebrating Inchstones: Take me out to the ballgame!

Thursday, May 6, 2010

Take me out to the ballgame!

Cade is having so much fun playing baseball this season. He didn't want to play when it came time to sign up. He literally waited until the last 20 minutes of sign ups to make up his mind. Personally, I think he was holding out for us to bribe him to play and that wasn't gonna happen. It was like a game of chicken, in my opinion...Cade will argue with this!

Anyway, he moved up to 9 and 10 year old kid pitch! Real kids pitching to real kids. They get walked and can steal bases! This is really the big leagues! And it is exciting. Sure sometimes the pitchers have a loooong wind up routine. And sometimes it drags on while ball after ball is thrown. But then suddenly someone will steal a base and have to slide, then things get exciting!!

Cade plays first. He loves playing first. He has played first on most of the teams he has been on. He considers himself sort of a professional first baseman. And he doesn't miss many but he has his errors.

And his batting has it's ups and downs. Don't they all. But he is fast when he gets on base. Tonight, though, his batting was pretty good. He got his first home run!!!! It was a fast in field ground ball that zoomed past 3 players all the way to the fence! I knew he had a double but the next thing I knew he was on third and then coming home! Moma and I were on the fence behind the plate cheering. We are pretty sure the sight of us at home plate scared and mortified Cade and he'll never hit another one for that simple reason alone! But boy we were all on cloud nine!!!

I feel bad too cause I've not had my camera for his games before tonight. And while I did take it tonight, I didn't get a picture of the home run! The first thing he asked me was if I had video of his home run! Oh, well, maybe next game!! And I took lots of pictures but I'll not bore you with all of them!

This is him getting a throw at first. I'm not good with the action shots. I tend to get into the action so I miss it with the camera. But if you ever need a good pre or post action picture, I'm your lady!

And this is at bat. Can you see the ball at his head?! Don't worry he ducked but the batters do get hit. A few per game usually. No worries though, you get to walk to first base if you get hit! I'm sure that more than makes up for the welt and bruise left by these fast pitches!

Another plus of ball season....the concession stand food isn't half bad! :)

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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!