Celebrating Inchstones: Strikes for Tikes

Saturday, October 23, 2010

Strikes for Tikes

The Kiwanis Therapy and Learning Center has a benefit each year called "Strikes for Tikes". It is held at a local bowling center. You form a bowling team and raise money that benefits the center. I thought the teams had to be businesses with large donations so we never had our own team. Until this year!!!

Team Asa consisted of me, Barry, my longest time friend Christina and her hubby, Eric! Cade ended up bowling for me and Eric was a fill in for my mom. Cade came in second and Barry came in last! I wish I could have seen that!

Turns out a bowling alley is incredibly loud and stimulating! I had to take Asa out and keep him calm for the most of the bowling time! He may have handled it better but the sound system had some issues and let out 2 sudden, loud screeches early on. I'm thrilled to say that while Asa wasn't happy, he didn't get sick at the overstimulation!!!

After bowling we all had lunch, played laser tag, played putt putt and enjoyed several arcade games! All for free, other than our team donation! I even won a door prize for having a Dum Dum sucker on hand.

We had the best family day!!! The kids had fun and I didn't feel nickeled and dimed to death since the money went to a good cause. We got to see and hang out with lots of friends! I can't wait until next year!

After the bowling fun, we headed to a family hayride and party. Asa even rode the hayride and had fun. He'd laugh out loud when the trailer would bottom out and scrape the path. We had pushed him enough so when he started to fuss we headed home! There was even a trick or treat circle where we all sat in a circle and the kids came around asking for candy. It was so cute! Cade and Gracie came home with big bags of candy! I can proudly say that they both had treats picked out for Barry, Asa, Anna and myself! That is very generous for Cade since he has such a huge sweet tooth!

We had a great, nearly normal day and it went nearly perfectly! I go to bed thankful and grateful for our many blessings. I also go to bed with a heavy heart for another one of our mito friends.

Please remember Cooper Knight and his parents, 3 siblings and family tonight. Cooper had an intestinal transplant many months ago. He had just returned home to Houston and after a short, healthy stay at home, he is back in the hospital and very, very sick. Please pray for Cooper to fight off this nasty infection but also for his parents as they struggle with making some difficult decisions. Mito is a horrible
disease!

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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!