Celebrating Inchstones: Pulling up!

Monday, December 12, 2011

Pulling up!

Our Christmas tree has a button we step on o turn the lights on. Asa pushes the button with his hands to light the tree. This morning Asa was sitting in the floor in the living room and I told him to turn the tree on. He scooter over to it but then scooter back to where I was curled up in the recliner. He reached up and tried to pull up. Usually I have to hold a hand and give him support while he untangled his legs and feet. This morning though, he grabbed my leg and the chair and pulled up on his own! He has done it 3 times today!! Oh and after he pulled up he turned his back to me, took my hands and pulled me so I'd get up. We walked to the tree where he tried his best to stomp on the button! He never did hit it though because his balance and coordination are awful! :-)

On the GI front, Asa kinda self weaned off foods. He just drinks the Elecare formula now and we offer him bites when we eat. Many times he refuses our offer. We have noticed that when he does eat he gets a rash around his mouth and often has diarrhea even though he is chronic ally constipated! We know he had blood test that showed food allergies. We pulled those foods but didn't really see a change. Now that he pulled the foods from his diet himself it seems like we are noticing a reaction.

I'm so worn out over eating issues. He prefers the formula, its faster and easier and apparently his body likes it better. I'm finding it hard to sit for 30-45 minutes and coax him into eat 80 calories when he needs 280 per meal. Its like a never ending feeding cycle! He loves to have a cup while we are in the van driving to and from school. They offer him food at school and he does eat better for them but they get to give him treats like pudding since he's already had his complete nutrition. Its so hard to push feeding real food! I just play it by ear! We never don't give him food if he wants it but we don't waste time forcing it either.

I feel like I'm leaving it on a downer part of the update but overall things are going well!

1 comment:

mom2my4boys said...: Wow that is amazing, how wonderful to see him be so strong and pull himself up! Way to go tough guy!
Amy DeMeyer; December 14, 2011 at 12:43 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!