Celebrating Inchstones: Boys and their toys....

Tuesday, March 23, 2010

Boys and their toys....

Last week Asa's OT mentioned a ride-on toy he thought would be good for Asa. He said it was a Power Wheel with the "go" button on the steering wheel. Now, we've had a few 4-wheelers, a Barbie jeep, a Princess car.....well, several Power Wheels but I've never seen one that I think Asa could come close to handling. So naturally, I came home a Googled. And I found this......

Then I checked it out at the toy store. Hmmmmm, seems like that might work. It has a seat with a velcro seat belt. The seat has a pretty high back. I think he might be able to handle that one. Who knew they made a Power Wheel car for an 12 month old! YIKES!

So, today Mr. Jim brought in the one he had at his house from his kiddos. And Asa was very interested! We thought he might startle at the sound but nope, he liked it! And this is one is way more secure for him. He pushed the button 2 times all on his own. He seemed happy to just sit in it and rock to make it move a little. I forgot to take my camera today so I don't have pics of him at therapy. BUT, this is at home.....

By this time the batteries were almost gone so it wouldn't really go. We brought it in and charged it some and then Asa rode in the kitchen! He pushed it once on his own. He just really likes sitting in it. Maybe he is getting to know it. Taking it all in. Kicking the tires. I can't wait to take him out tomorrow!!

And then there is Cade! Barry and Cade have been making 4 wheeler trails in the woods. Of course, there has to be a stream and water and mud involved!! The first thing Cade thought of when he saw Asa's car is that now Asa could ride the trails with them! SURE!!! Cade has come home covered in mud several times. This is today......

And you should see the 4 wheeler!

And just for the record, he does wear a helmet and it was covered too! ;)

We are all so glad it has finally warmed up a little here. You might notice that Asa is in his diaper only this afternoon. Yep, it was 70 and we were waiting in the car pool line and he was getting hot again. So off came the clothes! He didn't overheat though!

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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!