Celebrating Inchstones: Fall Fun

Saturday, October 22, 2011

Fall Fun

On Saturday, we took the kids from church to Falcon Ridge Farms for some corn mazing, pumpkin picking, petting zoo petting and all around fall fun. Unfortunately only 4 of the kiddos ended up going and 2 were mine!

Look how smiley they are in the van! They soon got tired of me and my camera!

Still smiling as we entered!

This is the whole group....minus me taking the pic and Asa strapped to my back in the carrier, which I LOVE and wish I'd owned longer! The 3 girls charged ahead and beat the rest of us. I'm pretty sure they didn't read the clues but just forged ahead and made their own way out!

Corn box after the corn maze. Asa loved it!!! And it was really cool. The kids skin was cool to the touch when they got out. I'm thinking we need a corn box for Asa in the summer!

Each took a turn being buried in the corn. I'm not sure I see the facination but then again I didn't get in!

Gracie in the bouncy ball corral!

And since it was empty, we adults gave it a go too. My legs still hurt!!! It is harder than it looks! And I must be the most uncoordinated person in the world because I feel of backwards and forwards!!! Thankfully Anna missed those shots and only has me on the ground!

Asa liked this swing and would drag his toes in the dirt as he went by. Reminded me of the tire swing and huge tree we use to play on at my grandmother's house. Her dirt was the best!

Chilling with Cade in the hammock.

And just because we are big kids at heart.... A tea party with Asa's sippy cup and juice box!!

It was a great day!!! The kids had a blast, the weather was great, the company was a blessing and Asa had the best day in weeks! He didn't puke or get freaked out one single time! Even though we really pushed the limits!

And I'd like some tips from all you folks who are posting pics of family pumpkin outings where the little darlings are in matching clothes and are all posing and smiling. We did good to even be dressed and I'm not 100% sure Gracie brushed her hair at all that day....she is boycotting it seems! Not to mention that each time I said "smile" they ran for the hills, or corn box! I'm not complaining but I'm wondering if my parenting handbook was missing that chapter. How bout someone just cut and paste my little darlings head onto the bodies of your perfectly posed and dressed kiddos. Feel free to not use Gracie's real hair....I'm thinking she'll be in dreads by Christmas!

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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!