Tim is a very, very happy kid. He hates it when he's sick, but the rest of his days, he's one happy camper.
He continues to do very well in school, and has magnificent friends with stylin' hair cuts. They all look ready to break out in song like some Disney Channel Musical at any time. While Tim is not in Honors classes, most of his friends are, and their genius rubs off enough for Tim's hard work to keep him on the Honor Roll. We suspect that Tim too could be in Honors classes but considers the level of homework he has now to be just plenty for him. It probably is, as he does still manage to miss more than 10% of the school year due to illness. The great news is that due to our insurance company's long term payments on major medical equipment such as Cough-Assist Machine, BiPap, Pulse Oximeter, Heart Rate Machine and other cool doo dads, we have a small Peds unit right here in our house, making in patient stays a thing for only ICU needs these days. Which is AWESOME!
Tim began school at age 2, in the Hearing Impaired program at Rolling Green School in Rockford, IL. He was diagnosed as having "profound, bilateral sensorineural hearing loss" and we were pushed to get him a cochlear implant at age 18 months. After researching the issue with my husband, I produced a paper explaining our reasons for deciding against it. Anyone interested in that topic can visit my Deaf Page.

Luckily, we made the right call on turning down that surgery, as Tim's hearing is now completely normal. (That came about around age 4-1/2 after his g-tube started giving him enough nourishment, and presumably then he had enough physical resource to use his auditory nerve again. Quirky!) But he's had plenty of other surgeries, including half a dozen for major orthodontic issues; insertion of a permanent feeding tube in his tummy; implantation of a venous port; removal of that port due to a staph infection that would not clear up; removal of the feeding tube this past fall; and tonsils and adnoids removal. At least I think that's all of them!

Tim's favorite pasttimes are mostly those that require little physical exertion, as his energy supply is quite limited. A day at school wipes him out. He loves video games (he owns a Wii), computer games (some RPG game, can't recall the name right now, but it's some geeky Dungeon and Dragon kinda thing),and reading books, mostly fiction with some basis in reality. He has a lot of interest in world culture, especially with all that's going on in the world right now, global warming, the environment, personal rights vs. government rights. He loves archery, too. He is Dr. ordered not to take P.E. in school to conserve energy from his day there, and it's allowed him to not have to use a wheelchair at school, plus have a study period to make up work from absences or just the large volume of homework teacher's LOVE to give.

His hospitalization rate is down since his docs in Madison have armed us with meds to suppress his vomiting and severe headache episodes that generally happen at the onset of an illness. We still have to admit him if we can't control the vomiting, or if he is unresponsive. But generally he knows how critical it is for him to force huge amounts of sugary fluids on himself, and does. Otherwise, I.V. fluids are the magic elixir that have allowed Tim to live to age 12--eight years past the original prognosis for him.

In the summer, Tim attends MDA camp, and loves that. He does have a wheelchair that we only have to use for long distances, so not often. His long term prognosis is unknown. His respiratory muscles are weakening, and if that continues, he will eventually need a respirator to breathe for him and THAT will land him in a wheelchair. These are things we know can and may or even will happen. But I know that with his attitude and the team efforts of his Dad, myself and his doctors, he should have a long and mostly "normal" life.

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