Celebrating Inchstones: Asa made breakfast this morning

Friday, April 2, 2010

Asa made breakfast this morning

Asa was scooting around the kitchen and got to 3 drawer organizer we keep his supplies in. While banging around on it, his chocolate cheerios fell onto the floor. Asa happily played with the box for a while. He loves opening and closing things so he opened and closed the top for a loooong time!

Then the box fell over! Out came a few cheerios!!

So he reaches in and pulls out a few to feed himself. Then he dumps the box upside down and a lot spill out!!JACKPOT!! He sat happily in his little pile of chocolate cheerios for quite a while. He really only ate a few. He put some back in the box. He opened and closed the top some more. He kicked around the ones he had on the floor.

At some point many got stuck to the underside of his leg and he was not happy with that at all! Once he started throwing them, I ended his happy breakfast game!! It's all fun and games til the cheerios start flying!

I'm so glad so many of you really understood about my happy run in with a super lady yesterday. I was amazed at the conversation and couldn't really figure out how to put it into words. I guess we live in a world were pleasantries are exchanged and sometimes not much else. Employers train employees to say "hi", "welcome" and "how are you" but they don't train them to mean those words! I have had the exact same chat with people several times a week and it has NEVER gone the way our chat did at Kohl's. I hope Amanda S. is only moonlighting at Kohl's because she has a God given gift to see people and things like no one else sees it! I pray that I'm able to have God's eyes like that and see the people around me more clearly!

2 comments:

Laura aka Mama Ham said...: So cute! Ethan is the same way about opening and closing things, especially doors. He can only army crawl around but when he gets to a door that is open, he pushs it until is ALMOST closes and than pushes it open over and over again. Also, we discovered chocolate cheerios- YUMMY!!!; April 3, 2010 at 4:32 PM
gg said...: Oh, the pictures of Asa are too cute. It is a true blessing to see him making a mess!!!! Who ever thought cheerios on the floor were a cause for celebration?!?!?; April 3, 2010 at 9:35 PM

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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!