Yesterday Aaron had an appointment at the Epilepsy Center for his regular check-up. Thankfully, his nocturnal seizures have lessened over the past few months – or we’re not hearing them as we sleep during the night. We have a baby monitor on our nightstand but I’m convinced that we don’t always wake up during his seizures. The Epilepsy Center here in Wichita has been a tremendous blessing to our family, not only to Aaron. Keith Trevolt, the Nurse Practitioner there, has taken such good care of Aaron over the years – even making a house call one Thanksgiving. I wrote about that in an earlier blog when telling Aaron’s story. Keith is a dedicated follower of Christ and everything he does is based on his relationship to Him. We share about the Lord at every visit and it’s such a blessing.
Keith is very patient with Aaron and listens to Aaron as he talks about anything and everything. Aaron tries to cover as many subjects as possible while he has a captive audience. Keith and I often have to talk over Aaron. Aaron sits on the exam table and rubs his hands together in excitement as he tells Keith about his latest movie, or game, or Paradigm experience, or a delicious overeating experience. Like yesterday when Aaron told Keith, “I was with Paradigm at the east mall and I went to Dairy Queen. I bought that new Chocolate Blast [or whatever it’s called] and after I ate it I had problems.” When Aaron said he had problems after eating something he means…………intestinal issues……………medically speaking – diarrhea…………….. “Mom, my stomach is making funny noises. Do you think I’m sick?” No, Aaron, you ate that triple super duper chocolate mess so now you’re paying for it. And so Aaron shared that with Keith, unembarrassed and factual, rubbing his hands together happily at this new story that he’s sure Keith really wants to hear.
Keith acts as if he has all the time in the world. Sometimes it’s so much fun visiting that I tend to forget the reason that we’re there. Then we get back to talking around and over Aaron about his seizures and the best course of action to take from this point.
The Epilepsy Center is without an Epileptologist right now and has been for some time. We pray that one is hired soon and that this awesome facility that has helped so many Epilepsy patients and families can stay open. What a huge loss it would be to so many if they were forced to close their doors, or change their dynamic in some way from focusing on Epilepsy in its many facets. The Epilepsy Center is a big reason that living so far from our families is tolerable. It would be very hard to leave the excellent care they have provided not only to Aaron, but to Gary and I as well. They have walked with us through the stages when Aaron had many seizures day and night; his hospital stay for 5 days for his video EEG; his VNS surgery; all the adjustments after that surgery and finally having to turn the VNS off; medicine changes and tweaking;………………I could go on and on. And I’ll never forget the time that Keith counseled Gary and I in his office, without Aaron there, about the best path to take for Aaron. He opened his heart and personal experiences with us, and saw my tears and heard our hearts, and was there for us.
Epilepsy, as with any chronic illness or condition, is more than a matter of pills and doctor visits. It’s a matter of walking this life-long walk with caring professionals at your side who care and who take the time and who have a heart……………and who pray to the One Who is truly the ultimate Great Physician.