Celebrating Inchstones: Knot head!

Friday, September 28, 2012

Knot head!

After all of Asa's great walking yesterday, today didn't go so well for him!

I got a call from the school as we were having lunch here. Asa had fallen and could I come. Now, he has fallen several times but none that required me to pick him up so I was slightly concerned. Only slightly though because my aunt was the one who called and I knew if there was a huge concern they'd get him to a doctor. It takes a good 30 minutes for me to get to his school.

So I rushed to the school and found him sitting in the nurses lap playing with books on her desk! He was laughing and smiling and happy. The bump was huge and colorful and it really did make me weak in the knees to see it! Then he would poke it and I'd want to pass out! He was completely unfazed though!

Apparently, they were walking down the hall and he just stumbled and fell. He doesn't try to protect himself at all. His poor teacher said it was like it was in slow motion and she just couldn't grab him. I've been there and done that! She said she almost got sick just knowing it was going to be bad. And get this, Asa never really cried! He didn't freak out and get sick! He didn't like the ice pack but he never acted like it hurt or scared him!

I went ahead and took him to the doctor just to be sure he was ok. I thought he'd probably wait until 9pm on a Friday night to make me worry and wish I'd taken him in. I've been there and done that too! Anyway he was just fine. He is still just fine! We were talking about it at supper tonight. I'd ask questions and he'd point to his boo boo. He'd show me how he has to put his hands out by slapping the table. He pointed to his shoes when I asked if he tripped on his shoes. He's a smart cookie, that one!

We also talked about how he needs to hold his teacher's hand. The boys and girls walk with their hands behind their backs and Asa follows along. No one has ever made him do this, he just realized the other kids were so he started putting his hands behind his back. Again, pretty smart cookie.....a smart cookie with a huge knot on his head! :)

It's all just another one of those milestones and boo boos that kids get and we are blessed that Asa is walking enough to get one too. But one is enough, please!!!

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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!