Celebrating Inchstones: Memorial Weekend

Monday, May 27, 2013

Memorial Weekend

Barry is always off on Fridays so when he got to be off for Memorial Day it has seemed like a real loooong weekend! Friday we got a ton of yard work done. I know that may not seem like fun but it really was. More importantly than having a nice yard, it really makes me aware that Asa is doing well enough for us to get involved in projects and actually complete them! Usually we'd start projects and then have to stop for an Asa issue. It left me feeling very ADD and scattered to have so much half done.
Not to say it was easy! Asa required lots of distraction and redirection! Cade played with him and was a great Asa helper! Cade got out Asa's plastic pool. He hooked up the water hose and let Asa fill the pool up. Once it was full though, we decided it should be in the shade so Cade poured it out and set him back up again. Again, once it was full we decided we should move it to the deck under the big umbrella. Cade poured it out and set asa up again! Thankfully, Asa didn't get outdone with us. All he really wanted to do was play in the water hose anyway! He never actually even got into the filled pool.

Since we got so much done we decided to invite some new friends over for supper on Saturday. Asa enjoyed helping me cook! We had a great evening!

Then, Sunday we camped out on a creek that runs thru my parents farm. I'll just say that I was NOT into camping out! We had a lot to do today and I just wanted to sleep in my bed! We had a good time though. The kids were excited to get our big tent out. We enjoyed sitting around the camp fire and talking about the stars.

Check out this before and after photo.... This time last year Asa was using his walker to check out the planting. This year he is walking on his own but did like to have Dee Dee along for company while he checked the crops! What a difference a year makes!

Today we were invited to a cookout and fishing!!! Gracie was excited to try her fishing skills out again!

And she didn't leave empty handed!!! She only caught one fish but look how big that one was!! I measured him at 2 flip flop long! Real official, right!

HeeHee, she wasn't sure about the kiss the fish that I suggested!

Anna and Cade are kicking off summer breaking by working at Project Acts with our church youth group. They'll stay away from home and do service projects around town. I hope they have fun but more importantly, I hope they both stretch their boundaries and see the needs of people in our town. We can talk all we want about sharing God's love with others but these guys have a real opportunity to do this at a young age! Praying for their safety and boldness this week!

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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!