Celebrating Inchstones: Bike riding

Monday, May 3, 2010

Bike riding

School was out today because of the flooding and storm damage but it was a beautiful day!! I took the kids to our church to ride bikes! The church is 1/4 mile from the house and has lots of pavement and a great hill to ride down! This has always been one of their favorite activities. I was afraid that it might be too hot for Asa and I took the cooling vest but he stayed in the shade and had a great time!!

The kids actually rode to the church and I followed behind them with my flashers on. I love being in the country and remember riding on the rode all the time when we were kids. There is more traffic these days though. On the way home we had 2 bikes, 2 Razor scooters, Asa's chair, the gait trainer and 3 kids in the van! Really, have I said how much I love my van!! I should have took a picture of all of that. There was handlebars and wheels everywhere.

Gracie was quite a poser today. Somedays she runs when the camera comes out and sometimes she strikes a pose!

Cade had a great idea of playing "tag" on bikes. He wouldn't take no for an answer! He saw no danger in tagging while riding or bumping tires while riding! And bikes are no fun unless it is full speed ahead! He and Gracie both started riding when they were 3. He used to think it was a blast to ride super fast and then shove the bike forward while he feel down on his bottom! DAREDEVIL!

And Asa loved the gait trainer on the pavement...for 30 seconds and then he headed off road! Seriously, do you see all the parking lot he had to ride on behind him and he headed for the rough and the grass! Must have learned something from his brother! Asa really did manage well out there. He gets frustrated in the house cause he is always hitting something!

And Anna! She wouldn't get her picture made but the riding was actually her idea! The days are few when she wants to play with Cade and Gracie. Today was full of bike riding, jumping on the trampoline and riding on the trails in the woods! I'm not even sure she had her electronic devices with her today! :)

And I know they should have had helmets on! We left out with so much "stuff" and I didn't even think of them until we were on the road. I think we take for granted that it is "just" a bike and it is safe but we have learned a lesson about helmets from the real life experience of a neighbor! Next time I'll do better!

They are out of school again tomorrow but it is a day full of therapy and grocery shopping so nothing fun tomorrow!

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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!