|Mason Josiah Quaid|
December 5, 2001
7lbs 2 oz, 20 inches long
At about six months Masey seemed to be forgetting how to suck. Each feeding we would do a series of sucking, forgetting, oral stim, sucking a bit and then forgetting again and repeat. We found a haberman feeding system that helped for a while. The nipple was longer and the increased contact with more areas of his mouth seemed to help him remember to suck. He lost the ability to suck on a binki but I could get him to suck my finger. Whenever he would forget how I would stroke the roof of his mouth from back to front and he would usually start to suck again. I know I looked pretty goofy with him sucking on my finger but it calmed him tremendously! We finally made the decision to place a feeding tube. Even thou we were able to keep him growing and gaining we spent all of our time feeding. He, and we, did little else. He had a nissen at the same time which fixed his severe reflux. Soon he began to aspirate on everything so we went to using the feeding tube full time. It was such a blessing and saved so much stress while keeping him healthy at the same time!
About the same time Masey had his first seizure. We happened to be in the hospital for another appointment. When the seizure began I went next door to neurology and grabbed the nurse. She confirmed that it was a seizure. Over the next few months the seizures increased and he was started on phenobarb, then topamax, and eventually lamictal and keppra. Over all his seizures have been more irratating and interrupting than dangerous.
At age 4 he got his first baclofen pump. It worked sooooo well up until last May when the catheter plugged and he had it replaced. The new catheter wasn't in place correctly and he just had surgery to correct that. As of today he seems to be back to his healthy happy self!