Celebrating Inchstones: Inchstones!!

Sunday, February 28, 2010

Inchstones!!

The thing about reporting inchestones is that they seem so tiny. So unimportant. If you aren't in the moment, they seem to disappear into the day. You blink and you miss them!

Inchstones for today:

1.) Asa tried a new kind of cookie today. It was a little butter cookie with a hole in the middle. I wasn't sure he'd even touch it but he picked it up and put it on his finger like a ring!! I ate one (to show him what it is for, duh!) and then gave him a bite of mine. Once he realized it was food, he put his right in his mouth! Let me tell you, it was messy! I don't know whose idea this was!! In the end he gummed on 2 cookies!!! Then took a bath! :)

2.) Asa tried ketchup! I put ketchup and mustard in a ziplock bag and let him poke and play. After he was into that I put ketchup on his tray. It took a minute but he got down and dirty!! He was smearing it on his face and chest so I took that as a sign that he might accept it in his mouth! I took his hand and put his fingers in his mouth. At first he smacked and made horrible faces. After a few times he was more accepting and acted like he really wanted it. Unfortunately he never put his fingers in his mouth on his own! That would have been a home run!!! Still, I'm pretty darn happy that he touched and tasted!!

3.) We've been hearing lots of sounds from Asa. Usually he just squeals, screams or cries. We are constantly making word sounds with him. "B-b-b-b-ball" or "M-m-m-m-m-moma". The list goes on and on! I must sound crazy when we are in public but this is what we do! The last few days we have heard some "mamama" or other constant sounds from him. It is not words or even the same sound but it is something. We used to hear "nanana" and "mamam" and even "bababa" but at some point those went away. Now we are hopeful they might be coming back!! They aren't here yet, but I'll keep babbling along!!

4.) Asa is entertaining himself for 30 min. at a time....sometimes! He will happily scoot around and open and shut doors. Or play with paper. Or play in the fridge. I know, these are the normal baby toys but it works for him so it works for us!!

5.) Asa has socialized with all of his siblings this weekend! He played with Anna while she ate some EasyMac....he wanted the container not the food, she tried! He laughed and laughed while playing ball with Cade! Gracie entertained him when she roller bladed around the kitchen. He gets such a kick out of them all! They make him laugh, he makes them laugh, we all laugh!!

6.) He didn't poop in the tub this morning! YAY!

So that is our inchstones for today! Pretty impressive day, I'd say!!

2 comments:

Rose said...: I love the concept of celebrating inchstones. Way to go Asa!; February 28, 2010 at 9:34 PM
gg said...: I loved seeing his cute little MESSY face!!!! Great day worth of inchstones.; March 1, 2010 at 10:49 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!