Celebrating Inchstones: Blessings

Monday, March 28, 2011

Blessings

I haven't been able to get this song off my mind for a few days now. I think each time we have a big doctors appointment I really start to think again. It's like most days are just our normal and I don't have anything else to compare it to. Then we have an appointment and we start getting the questions again. Not that I mind the questions at all. I love questions. I love to raise awareness and spread the word about mito. I can and will talk to anyone who seems interested....just ask my family! But it also brings a realization that we are different. Our blessings aren't the blessings of others.

I can't complain about our trials with mito. We are blessed that Asa has been so healthy for so long. There are no huge issues to be dealt with at these doctors appointments. He is following his own path for sure! For these things I'm beyond thankful! But if we wake up in the morning and Asa is miraculously healed then you won't hear me complain either!

This song helps remind me that my plan is not the best plan. Things won't go the way I want them to go but the struggles and disappointments have also brought so many blessings. I've learned more in the last 3 years than I did my first 30 years. God has opened my eyes to blessing and His hand in so many ways that I could not even begin to list them. God has taken every one of my weaknesses and made me stronger. He has pulled and stretched me but instead of breaking I've gained a stronger faith that I'm not alone or out of control.

"We know that pain reminds this heart
That this is not, this is not our home
It's not our home"

I think these lyrics are my favorite of the whole song. While I'd love to have the "normal" that this world offers, I love even more the struggles of now for the "normal" of Heaven later! In fact I think the struggles make me long for Jesus even more. When I hear of the disasters happening more and more and all the signs of the end times, my first response is "yes, Lord, let it come"! Is that crazy to wish for tribulation and trials? Not when you know how the book ends!!! And I have assurance that I will overcome and be victorious!

I have even more peace since last week Cade announced that he gave his life to Christ. He has told us this many times before but he would never confess it before our church. And yes, he did this while Barry and I were 650 miles away in Houston. But again, God's timing not mine! In any case I can rest assured that my family will all be rejoicing at the feet of Jesus when the time comes. So why worry and stress about the rough times now when our eternity is gonna be so awesome!!! Yes, Lord, let it come!

1 comment:

gg said...: God IS good....; March 29, 2011 at 11:00 AM

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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!