Still gaining
I darted through the halls looking for Gilly in one waiting room and then another, and back again to the first. “Where did he go?” I questioned myself nervously. I had arrived a few moments early to be sure not to miss the visit with Dr. Kavan, and had instructed my mom to wait until he had his blood test before leaving, and have him wait for me in the waiting room. Could he already be in with Dr. Kavan? I politely waited my turn, my anguish turned inwards. Finally I got to ask about Gilly. “I saw him awhile back,” the secretary replied quizzically.
A volunteer stepped up suddenly and assured me that he is fine, and already being seen. I could barely contain myself from sprinting down the hall as I followed her at what seemed to be a snail’s pace. I should have known better; he was safe and sound, my mom was there at this side and the good Dr. hadn’t yet made his appearance. It was still 5 minutes before his scheduled appointment. We normally wait a long time to see Dr. Kavan, but today everything was running like clockwork; only the mechanism was set a bit too fast. No harm done. I was there to ask the questions and provide some answers. My mother was relieved because #1 she was unaware of what questions I had to ask, and #2 she is free tonight; no need to read the Blog because she’s well informed (which is a joke; she’ll probably read it anyway even though she said she didn’t have to).
Gilly gained a kilo! Pretty soon he’ll be bursting out of his clothes…NOT. Dr. Kavan said that he must be doing great, because the resident didn’t even notice his poor vision. He spontaneously tried testing it there on the spot, I suppose because he thought perhaps there’d been an improvement. He failed to get a true handle on the ‘perceptual’ aspect of the problem, though. Many health professionals who have dealt with Gilly have not been able to recognize the severity of the visual condition he lives with.
This reminds me of the way some pediatricians test children’s hearing; they clap next to the child’s right ear and then left, and if the child turns towards the sound, they claim that the hearing is fine. Having worked at the Montreal Oral School for the Deaf for many years, I know only too well that this sort of screening is insufficient and downright faulty. Many children with hearing problems are diagnosed later than they should be because the parents are not advised to have a proper hearing test.
The professionals at Montreal Association for the Blind seemed to fully grasp the nature of his visual problem, but he unfortunately does not fit the criteria for follow-up services, so it doesn’t help us much at all.
Dr. Kavan asked, “How are you doing these days?” Gilly replied, “Bad.” I did a double take. My mother had just reported to me that he said, “Great!” when the resident asked him how he was feeling moments earlier.
He was not able to express exactly what he meant when asked to explain why his answer was so drastically different, because the words do not come out easily. By probing with [yes / no] and [this ‘or’ that] type questions, we gathered information from him that led us to guess at what he was trying to articulate. It seems that he is feeling sad because he does nothing all the time.
Dr. Kavan asked about the anti-depressant. I told him that he continues to take it. He explained that some anti-depressants cause the person to feel ‘flat’ and so they do not experience ups and downs. We’ll have to keep a close watch on the situation, I guess. For now, we will not change his medication.
I brought up the idea of hiring an O.T. on a private basis to help him learn to deal with his physical limitations, and find past times that would help him feel more fulfilled. Dr. Kavan agreed that it would be a good idea to go privately, because the chances of obtaining the services of an O.T. through the system are not good. I asked for recommendation as to where to look for a good one, and he said to call Denise next week at the Neuro. He said he’d ask the nurses at the Neuro for information.
I will be pursuing this to the nth degree at this point. We seem to go through seasons when it comes to Gilly’s needs; everything in good time. I move from one sort of hunt to another, although I must admit that I have been wondering and asking about the services of an O.T. since he was in the hospital last February, relearning to walk. I’m officially moving my search up a notch in terms of priority.
Dr. Kavan turned to me and asked, “So are you working full time?” I told him that I am. He wondered if Gilly spends his day at home alone. I told him that we have a number of sytems working. He looked over at my mom and acknowledged, “You have a supportive family.” “Yes,” I admitted, and friends and the CLSC help support us too. He seemed to understand how difficult it must be for me to coordinate it, just by the look on his face. He turned to Gilly and gave him a gentle pep talk; he emphasized that he has some responsibility to do some work on his end too; that he has some control over the situation (not in those exact words, but this was the impression I was left with. Perhaps my mother and / or Gilly read something different into it).
On the way home I asked Gilly why he told Dr. Kavan he’s sad and feels bad, while he told the resident he feels great. He couldn’t explain it. I took a guess, “Is it because you know Dr. Kavan better and feel more comfortable telling him the truth?” He agreed with this explanation. Who knows? I may be leading the witness???
We are pleased over all with the news on the medical front. Gilly’s condition as far as neurological functioning remains stable, the return of his appetite has made a difference in that he continues to gain weight (although he still looks like Twiggy on a diet to me) and we are to continue along the same lines as before.
A volunteer stepped up suddenly and assured me that he is fine, and already being seen. I could barely contain myself from sprinting down the hall as I followed her at what seemed to be a snail’s pace. I should have known better; he was safe and sound, my mom was there at this side and the good Dr. hadn’t yet made his appearance. It was still 5 minutes before his scheduled appointment. We normally wait a long time to see Dr. Kavan, but today everything was running like clockwork; only the mechanism was set a bit too fast. No harm done. I was there to ask the questions and provide some answers. My mother was relieved because #1 she was unaware of what questions I had to ask, and #2 she is free tonight; no need to read the Blog because she’s well informed (which is a joke; she’ll probably read it anyway even though she said she didn’t have to).
Gilly gained a kilo! Pretty soon he’ll be bursting out of his clothes…NOT. Dr. Kavan said that he must be doing great, because the resident didn’t even notice his poor vision. He spontaneously tried testing it there on the spot, I suppose because he thought perhaps there’d been an improvement. He failed to get a true handle on the ‘perceptual’ aspect of the problem, though. Many health professionals who have dealt with Gilly have not been able to recognize the severity of the visual condition he lives with.
This reminds me of the way some pediatricians test children’s hearing; they clap next to the child’s right ear and then left, and if the child turns towards the sound, they claim that the hearing is fine. Having worked at the Montreal Oral School for the Deaf for many years, I know only too well that this sort of screening is insufficient and downright faulty. Many children with hearing problems are diagnosed later than they should be because the parents are not advised to have a proper hearing test.
The professionals at Montreal Association for the Blind seemed to fully grasp the nature of his visual problem, but he unfortunately does not fit the criteria for follow-up services, so it doesn’t help us much at all.
Dr. Kavan asked, “How are you doing these days?” Gilly replied, “Bad.” I did a double take. My mother had just reported to me that he said, “Great!” when the resident asked him how he was feeling moments earlier.
He was not able to express exactly what he meant when asked to explain why his answer was so drastically different, because the words do not come out easily. By probing with [yes / no] and [this ‘or’ that] type questions, we gathered information from him that led us to guess at what he was trying to articulate. It seems that he is feeling sad because he does nothing all the time.
Dr. Kavan asked about the anti-depressant. I told him that he continues to take it. He explained that some anti-depressants cause the person to feel ‘flat’ and so they do not experience ups and downs. We’ll have to keep a close watch on the situation, I guess. For now, we will not change his medication.
I brought up the idea of hiring an O.T. on a private basis to help him learn to deal with his physical limitations, and find past times that would help him feel more fulfilled. Dr. Kavan agreed that it would be a good idea to go privately, because the chances of obtaining the services of an O.T. through the system are not good. I asked for recommendation as to where to look for a good one, and he said to call Denise next week at the Neuro. He said he’d ask the nurses at the Neuro for information.
I will be pursuing this to the nth degree at this point. We seem to go through seasons when it comes to Gilly’s needs; everything in good time. I move from one sort of hunt to another, although I must admit that I have been wondering and asking about the services of an O.T. since he was in the hospital last February, relearning to walk. I’m officially moving my search up a notch in terms of priority.
Dr. Kavan turned to me and asked, “So are you working full time?” I told him that I am. He wondered if Gilly spends his day at home alone. I told him that we have a number of sytems working. He looked over at my mom and acknowledged, “You have a supportive family.” “Yes,” I admitted, and friends and the CLSC help support us too. He seemed to understand how difficult it must be for me to coordinate it, just by the look on his face. He turned to Gilly and gave him a gentle pep talk; he emphasized that he has some responsibility to do some work on his end too; that he has some control over the situation (not in those exact words, but this was the impression I was left with. Perhaps my mother and / or Gilly read something different into it).
On the way home I asked Gilly why he told Dr. Kavan he’s sad and feels bad, while he told the resident he feels great. He couldn’t explain it. I took a guess, “Is it because you know Dr. Kavan better and feel more comfortable telling him the truth?” He agreed with this explanation. Who knows? I may be leading the witness???
We are pleased over all with the news on the medical front. Gilly’s condition as far as neurological functioning remains stable, the return of his appetite has made a difference in that he continues to gain weight (although he still looks like Twiggy on a diet to me) and we are to continue along the same lines as before.
posted by Gilly at 6:38 PM
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