Celebrating Inchstones: Another week down

Saturday, September 4, 2010

Another week down

Sometimes I just find myself wishing the days away! Looking forward to the weekend or the next event or the next holiday! It seems like there is little to celebrate these days and most days i'm just counting down the hours until bedtime! I know I'm not alone in that feeling!!

Asa is still weak. He won't let us help him take steps. He stops, whines and turns around to be picked up. Even in PT with the gait trainer, he was leaning on the supports more than being upright. We tried the moblie stander again but he only moved it a tiny bit. His posture was horrible!!

The odd and sad thing about this is that his mind still wants to do all the things he was doing!! This creates some, uh, frustrations!!! He wants to be all over but his body won't let him. This leads him to scream and screech until someone does what he wants. But it is not easy to tell what he wants! Mostly he wants to be moving. That is kinda hard on my body! Wonder if I can find a wrap that will hold a noddlely 30 pounder!!

The weather was wonderful here today. This evening we took Asa out for a while! He rode in his little power wheel car that his OT loaned us a while back! Asa was really into it today! At one point he was close to a tree and I thought he was going to get stuck. Turns out he drove TO the tree! He reached out to the tree trunck and the leaves! He drove until the batteries ran out!!!

On the eating front Asa is not eating early. It usually takes him several hours before he'll eat. He spends those hours completely cranky!! He did have waffle this week. And he tried diced pears one day! Oh and donuts! So some new things. He has also been getting sick every night again. I thought the Reglan had taken care of that business!

1 comment:

gg said...: I hate reading Asa's tone is "off". I totally understand the frustration our little one feel when they know they should be able to move, but their bodies won't allow it. Huge hugs to you and Asa!!!!!; September 5, 2010 at 7:54 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!