Handicap on top of Handicap

Brayden is almost 17 months old. For the first twelve months of his life, I felt like we had it pretty easy with him. Brayden had no huge medical concerns. Of course he is dealing with seizures but we have come to accept them as part of his daily life and know when an adjustment in medication is needed. Since his first birthday, his handicaps seem to become greater.

As Brayden grows, his limitations and abilities become more apparent. I spoke with the neurologist for a long time last week. We have discovered that his basic function of controlling his body temperature is not working. Throughout the winter Brayden’s hands and feet would become red and extremely swollen, his body overcompensating to keep his extremities warm. Then come spring it has not happened once. Then we noticed this summer that Brayden does not sweat, not a drop of perspiration on his body.
His basic function of digestion is not functioning properly. He just had his G-tube was replaced with a G-J tube; his stomach was not digesting properly (G-tube) and needed a J-tube to go right in to his small intestine.

The decision for Brayden is get the G-J tube was some what difficult. I said to Jeremy, “How can Brayden be more handicap?” Having his food go into his small intestine instead of his stomach, that seems like a major set back. He is going to be hooked up a machine, the feeding pump, around 20 hours a day. What kind of life is that? There is some comfort in knowing that he is getting nutrition and not vomiting it all up, giving him the best growth opportunity.

It seems as though every couple of months we add another aliment to Brayden’s medical issues. As he gets older handicaps become more apparent, like his seizures. When a baby twitches no one seems to notice, when a toddler twitches it looks more dramatic. The past couple of months, he vomits after some seizures.

Each month passes and we are adding handicap on top of handicap: unable to hold head, sit, talk, walk, see, eat, etc. We do not expect much from a baby so we were not aware that Brayden maybe dealing with more and more. As he is becoming a toddler, issues are coming to the surface that may have been there all along but we are just learning to recognize them. As a baby he used the same baby gear his older brothers used. Brayden grows and he needs more handicap equipment: KidKart, bath chair, feeding pump, etc. We are grateful for the equipment because it makes life easier and more comfortable for Brayden but it makes things feel more handicap.

Handicap on top of handicap and we adjust.