Celebrating Inchstones: Time flies!

Monday, November 1, 2010

Time flies!

I can't believe it is November already! I'm ready to get the tree up! What about you? When do you start the Christmas decorating? How about Christmas shopping? I've already got a lot. And I've got ideas for the rest.

Asa went to school today. It was his first Monday! Why is there such a stigma with Mondays? He went to music class and had speech therapy. When I got there to pick him up, he was hot and tired. Can you believe 2 1/2 hours tires him out?! I guess I forget how much down time he gets here that he can't get at school. Hopefully he'll build up a tolerance and be able to play longer. Thanks for all the tips about pick up! I've started coming in slower and hanging out a little. Seems to really help. I guess the Moma bursting in the door would be a little startling.

Today I had Chinese food for lunch! I know that doesn't sound news worthy but it is!!! First, I rarely get a meal alone that isn't rushed! Second, no one else in my house likes Chinese! We get take out pizza or Mexican or chicken but never Chinese food!

As I type this Asa is eating spaghetti and green beans!!! Mostly spaghetti! He makes the worst face when I give him a bite of green beans!!! :-)

And lastly.....Don't forget to vote tomorrrow! No matter who you vote for, just vote! I can give you some suggestions if you need help! Im tired of the polling calls and a mailbox full of flyers too but this is important! Our service men and women have fought for our right to vote. There are many countries who don't allow their citizens that right. Voters are forced to vote a certain way or tortured and killed if they dare vote at all! Voting is one of our most prized privilages and we need to use it! We can't control what the elected officials do once they get in office but to sit on our behinds and do nothing at election time shouldn't be an option! And if you don't vote you certainly can't complain about who got elected and how they govern! Again, if you need help deciding who to vote for I'll give you my 2 cents!

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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!