Celebrating Inchstones: "Where is Asa?"

Monday, February 8, 2010

"Where is Asa?"

That is a phrase that has been heard around here a lot the last 3 days! Especially today! He is a scooting wonder.

This morning he was in the trashcan that sits beside his highchair. It only has feeding bags and empty Pedisure bottles in it so no fear that he was in something nasty! He was dumping it all out though so Anna moved it into my bedroom. Guess where Asa went!!! Right in there too and continued to pull the bottles out!

Another time we lost him and he was in his room! It is so fun to find him playing alone but it also means we've got to baby-proof!! This scooting and adventuring is such a blessing. We didn't think we'd ever see this with Asa. Not that we weren't trying and praying for it but we were pessimistic, I guess.

Asa tone is so low. He can sit alone but not get into sitting. He can't bear much weight on his arms or for a longer period of time. And mostly he has lacked the desire to explore. He has always been happy to be in one place. Even when he learned to roll over, he didn't explore. He didn't roll with purpose. He didn't use his skill to get anywhere. He simply rolled for necessity. Onto his belly to sleep. Off his belly so he didn't have to work.

I'm excited that Asa learned to scoot but I'm more excited that wants to explore and interact with us and his surroundings! I just hope he doesn't find Cade and Gracie's bedrooms!! Then I'll be in trouble!

We also hung his swing up in the door way today so he could swing. He really likes that and it gave Gracie something to do!!!

We started the motility meds back this weekend. We are seeing increased motility but it from the wrong end! We have had some fun poop stories this weekend but don't worry, I won't share! He has eaten a little better but is still gaggier than I thought he'd be. I'm not sure what is going on.

Asa was so sleepy this afternoon. I changed his diaper and laid him down for a nap. I skipped the relaxing rocking since his eyes were almost closed. WRONG! He started screaming and left him alone to see if he'd calm back down on his own. Well, my smart little Gracie said, "I'd go get him if I were you. He is gonna puke." Sure enough the cry started sounding pukey so I went in and got him up. And yes, he did get sick!!! Isn't Gracie a smart cookie! Too bad she can't read his cues when she is in his face and he is giving her the "back away sista" cry! :)

1 comment:

Meghan Clement said...: Wow Asa! I am proud of your scooting and adventuring! Keep up the great work!

Lots of Love,
Meghan and Eric; February 8, 2010 at 11:34 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!