I was eager to help Travis develop in every way possible. Because he did not respond to sounds, I took him for a hearing test, and found that he was profoundly deaf in one ear, but could hear in the other just fine.
Then I took him for a CAT scan, and they discovered that he could see! But that was a most unusual thing for a child with hydranencephaly, and they couldn't tell me if he would ever be able to understand what he saw.
Yet God had given him a gift most marvelous. The doctor showed me, and I could clearly see on the CAT scan, his optic nerves running from his eyeballs, right straight through the spinal fluid that filled his skull, and anchored solidly to the tiny spot of brain tissue that he had in the back of his head - the part of the brain that interprets vision! There he was, with nothing there except a brain stem, but with a tiny bit of cortex that enabled him to see! Praise God from which all blessings flow!
We set up every kind of stimulation we could, for our baby. We bought him a waterbed to play on, though he still slept in his own crib. But he did enjoy the warm waterbed. He was quite rigid, but every tiny movement he could make, set that water moving, and he would try to move again, and sometimes smile. Laying another little one on the bed who could move better, gave him a bigger thrill. Every time THAT little one kicked his or her legs, the bed would rock and roll. It was a marvelous toy!
We suspended all kinds of rattles, bells and toys directly above him, so that if he had moved his arms at all, he would have bumped them, just as we had done for his sister Misty before him. But he was not able to do so. His arms were rigid.
We wound up every kind of music box that could be found, that would move, for him all the time, and set them by his left ear, so he could see them go round and round, and hear them well. His brother Joshua was deaf in his left ear, and could hear well in his right. Travis was deaf in his right ear, and could hear fine with his left. Both sons were rather handy, in that, if they needed to sleep, and it was noisy, I only had to lay them on the sides their good ears were on, and they slept just fine through anything! If I wanted to get their attention, and help them hear the best, of course, I would lay them on the opposite sides!
We put earphones on Travis, so see if he would enjoy the children's songs more right in his ear. I don't know if he enjoyed them more, but he did smile beautifully with them on, on the waterbed!
He still fit in an infant swing, so he spent time swinging too.
And of course, he was a darling centerpiece on our dinner table, in his infant seat, so we could talk to him while he watched us!
We traveled and camped at every possible time! Travis had difficulty swallowing his saliva successfully. So he suffered from frequent aspirate pneumonias. Within a year, we had to bring the portable suction machine; and as time went on, oxygen and breathing treatments, (the kind given with a machine called a "pulmo-aide" to asthma patients) with us wherever we went. We had to have a portable suction machine with us EVERY time we went out in the van, even to a doctor appointment, because his head arched backward, and he gurgled, and all he had to do was breathe wrong, and suck saliva into his lungs, and I had to pull over quickly, and suction his lungs RIGHT THEN, or he'd develop aspirate pneumonia.
Once on a camping trip, he aspirated, and I heard it. I always slept with him in my bed in the trailer, on his side, with his upper body elevated as usual, and so I was right there reading a book beside him when he breathed in a droplet. Though I suctioned long and hard, I knew he was going to develop pneumonia very soon. I just couldn't get his airway to stay clear.
The respiratory therapists had taught me that children always tip their heads back when they're having trouble breathing - like when they're smelling a daisy. I was supposed to keep an eye out for that "smelling a daisy" pose. I learned to know it very well.
He was only gurgling just a tiny bit, but by then, I knew his sounds very well. I could take no chances. It was get help, or head for home in the morning. I suctioned him periodically all night, giving him breathing treatments as well.
Early the next morning I found a tiny country hospital. I needed antibiotics. They called his own children's hospital long distance from back home, and gave us antibiotics on the spot. I got back in the van, and gave them to him the rest of the trip. He got better, and I thanked God for those kind people! I was camping with thirteen children, and was so grateful not to have to turn around and go home!
© 2004 Rosemary J. Gwaltney