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| How cute is this guy? The book was a joke gift for his 16th birthday |
Tuesday, December 13, 2011
He was blind, but now he sees?
The most amazing thing is happening. Tanner is regaining some of his vision. He is still legally blind, but the little retinal ganglion cells in his optic nerve are firing back up again. This can happen sometimes with Leber's Hereditary Optic Neuropathy. They don't know why. They don't know if it's permanent.
Tanner is currently eligible and has been accepted into the Florida School for the Deaf and the Blind, and is scheduled to start January 13. If he totally regains his sight, he won't have to go. He has already lost much time because of this, but what can we do?
Monday, November 21, 2011
My beautiful daughter
We interrupt this program for a special message: In exactly one week two days, my beautiful, talented daughter will be 25 years old. I was a terrified 24-year-old when I discovered I was pregnant with her. I didn't know what was in store for me then, and definitely did not know the boundless love I would have for her.
Each year, on her birthday, I call her at 7:06 am, the time she was born. When I was pregnant with her, I was working at Holiday Inn in Gainesville. I had been a server, but when I became pregnant, the food and beverage director pulled me aside and told me I could not wait tables when I was pregnant - it just wouldn't look good. They told me that I could be a hostess.
I didn't know much then, but I knew this was illegal. I filed a complaint with the EEOC ( I forget what it stands for at the moment), and I consulted an attorney. It ended up that I won the complaint, which meant they had to give me back pay (it might have been $300 back then), and Holiday Inn was also admonished that they could not retaliate against me - meaning, they had to treat me nicely from then on in.
Boy, they didn't like that one bit. The one guy, his last name was Bolno, would come to the restaurant every once in a while, and he would make a report on what he had observed. The manager at the time, who liked me, and was disgusted by what they had done to me, showed me one of the reports. In it, Bolno singled me out, and said that although I appeared to be taking care of my tables, I was "grossly overweight." This was shortly after I returned to work after having my beautiful Annette.
Bolno didn't last much longer at the Holiday Inn. I have always fantasized about really telling him off - and have hoped that karma caught up with him at some point in time.
But enough about that. My beautiful Annette.
I had been hostessing Thanksgiving Day - all freakin' day. It was so busy. At the end of the day, I walked into the kitchen and - wouldn't you know? it was right in the middle of a roll fight. One of the servers was in the middle of a lob, and it hit me in the neck. I burst into tears, because I was emotional, not so much because it hurt, and the server felt so bad.
By the time I got home, it was about 9 pm, and I was tired, but I was keyed up. I tried to sleep, but I kept having pains. Thought it might have been gas. The pains became stronger, and more frequent, until I thought I MIGHT have been in labor, but my actual due date was a month away.
My doctor said I could come in, it was possible I was in labor. I was in denial, however, and even on the frantic way to the hospital - with my husband blowing through at least one red light - I was convinced it was false labor.
When we got to the hospital, I walked through the ER doors, and climbed up on a gurney the wrong way. I couldn't move. They examined me shortly thereafter, and I was at 9 centimeters. I was going to have a baby. No time for an epidural or anything, just some medicine they said would take the edge off. Not so much. It did, however, drug Annette after she came out (they gave her some medicine to counteract that).
Hubby was feeling faint. They gave him a cool cloth and some orange juice, as I was doing the pushing. I guess it was rough on him. And then, after Annette made her debut, he left with her to see where they were taking her. Meanwhile, when he was gone, the nurses made me go to the bathroom - I guess they have to to see if my bladder was torn. I passed out on the toilet, and when Hubby came back, there I was, on the toilet, with nurses huddled around me, giving me smelling salts.
When I felt better, and was in my own bed, they brought my beautiful Annette in to me, and I cuddled her like she was a bag of glass. I was afraid of breaking her. Somehow, I didn't.
When the pediatrician on call came in to talk about Annette, she was careful to talk about her birthmark. I knew what a birthmark was, knew it was permanent but harmless, and the doc was talking about it like I didn't know what it was. Sheesh.
All I could feel was wonder and love, and fear and hope. Twenty-five years later, nothing has changed. Happy Birthday, Annette. <3
Each year, on her birthday, I call her at 7:06 am, the time she was born. When I was pregnant with her, I was working at Holiday Inn in Gainesville. I had been a server, but when I became pregnant, the food and beverage director pulled me aside and told me I could not wait tables when I was pregnant - it just wouldn't look good. They told me that I could be a hostess.
I didn't know much then, but I knew this was illegal. I filed a complaint with the EEOC ( I forget what it stands for at the moment), and I consulted an attorney. It ended up that I won the complaint, which meant they had to give me back pay (it might have been $300 back then), and Holiday Inn was also admonished that they could not retaliate against me - meaning, they had to treat me nicely from then on in.
Boy, they didn't like that one bit. The one guy, his last name was Bolno, would come to the restaurant every once in a while, and he would make a report on what he had observed. The manager at the time, who liked me, and was disgusted by what they had done to me, showed me one of the reports. In it, Bolno singled me out, and said that although I appeared to be taking care of my tables, I was "grossly overweight." This was shortly after I returned to work after having my beautiful Annette.
Bolno didn't last much longer at the Holiday Inn. I have always fantasized about really telling him off - and have hoped that karma caught up with him at some point in time.
But enough about that. My beautiful Annette.
I had been hostessing Thanksgiving Day - all freakin' day. It was so busy. At the end of the day, I walked into the kitchen and - wouldn't you know? it was right in the middle of a roll fight. One of the servers was in the middle of a lob, and it hit me in the neck. I burst into tears, because I was emotional, not so much because it hurt, and the server felt so bad.
By the time I got home, it was about 9 pm, and I was tired, but I was keyed up. I tried to sleep, but I kept having pains. Thought it might have been gas. The pains became stronger, and more frequent, until I thought I MIGHT have been in labor, but my actual due date was a month away.
My doctor said I could come in, it was possible I was in labor. I was in denial, however, and even on the frantic way to the hospital - with my husband blowing through at least one red light - I was convinced it was false labor.
When we got to the hospital, I walked through the ER doors, and climbed up on a gurney the wrong way. I couldn't move. They examined me shortly thereafter, and I was at 9 centimeters. I was going to have a baby. No time for an epidural or anything, just some medicine they said would take the edge off. Not so much. It did, however, drug Annette after she came out (they gave her some medicine to counteract that).
Hubby was feeling faint. They gave him a cool cloth and some orange juice, as I was doing the pushing. I guess it was rough on him. And then, after Annette made her debut, he left with her to see where they were taking her. Meanwhile, when he was gone, the nurses made me go to the bathroom - I guess they have to to see if my bladder was torn. I passed out on the toilet, and when Hubby came back, there I was, on the toilet, with nurses huddled around me, giving me smelling salts.
When I felt better, and was in my own bed, they brought my beautiful Annette in to me, and I cuddled her like she was a bag of glass. I was afraid of breaking her. Somehow, I didn't.
When the pediatrician on call came in to talk about Annette, she was careful to talk about her birthmark. I knew what a birthmark was, knew it was permanent but harmless, and the doc was talking about it like I didn't know what it was. Sheesh.
All I could feel was wonder and love, and fear and hope. Twenty-five years later, nothing has changed. Happy Birthday, Annette. <3
Sunday, November 6, 2011
Fearless
When I first realized that Tanner was losing his sight, I was afraid. Afraid that he had a life-threatening illness and that he would be taken from me. I was also afraid his life had changed and he would not be able to cope. I was even afraid he would never meet a girl and fall in love, just because he couldn't see anymore.
I cried almost every day, sometimes in front of him, sometimes in private. Now, almost six months later, I don't cry all the time anymore, but I still get sad.
It's just the little things that make me sad: when he puts his cell phone down on the sofa, then comes back a few minutes later and has to sweep his hands over the sofa because he can't see it. He can't always tell what food there is to eat in the fridge or freezer, and sometimes his favorite snacks go uneaten.
I get sad when he watches "King of Queens," his favorite show, but he doesn't really watch the TV, he just listens.
One time, he crouched down to pet what he thought was our dog Schatzi, and it was just a pile of stuff that his dad was taking outside.
He can't read the menus in fast food restaurants, or see the different types of soda when he gets himself something from a fountain machine. Sometimes, his close friends walk right by him and he doesn't even know they are there.
Through it all, he has had an amazing spirit. "Mom," he said, "There are people who have it worse than I do."
I cried almost every day, sometimes in front of him, sometimes in private. Now, almost six months later, I don't cry all the time anymore, but I still get sad.
It's just the little things that make me sad: when he puts his cell phone down on the sofa, then comes back a few minutes later and has to sweep his hands over the sofa because he can't see it. He can't always tell what food there is to eat in the fridge or freezer, and sometimes his favorite snacks go uneaten.
I get sad when he watches "King of Queens," his favorite show, but he doesn't really watch the TV, he just listens.
One time, he crouched down to pet what he thought was our dog Schatzi, and it was just a pile of stuff that his dad was taking outside.
He can't read the menus in fast food restaurants, or see the different types of soda when he gets himself something from a fountain machine. Sometimes, his close friends walk right by him and he doesn't even know they are there.
Through it all, he has had an amazing spirit. "Mom," he said, "There are people who have it worse than I do."
Wednesday, November 2, 2011
The Florida School for the Deaf and the Blind
Throughout the summer, I was concerned about Tanner's education. I knew he had a legal right to education, no matter what his disability, but it's quite another thing to know how to go about it. I had contacted the local school system, but they were moving slowly to get him the services he needed.
I heard about the Florida School for the Deaf and the Blind in St. Augustine. This is a 100 + year-old school that is the model for teaching children with hearing or visual disabilities. It is a public school, so the education is free, but the services they provide are far beyond anything we have been acquainted with here in our area.
The school comprises two separate campuses, one for the deaf, one for the blind. Class sizes are no more than 10 students to a teacher, most teachers are nationally certified. They have sports, including the wrestling that Tanner loves. There is a two-lane bowling alley in one of the common areas, three gyms, including a heated indoor pool and a rock-climbing wall. And on and on.
The downside to this is that Tanner would be gone Sunday afternoon through Friday afternoon. He would live in the boys' dorm, with one or two other roommates. This would initially suck for Tanner, and although I am convinced this is the right place for Tanner to be, I am afraid he will hate me forever. He does not want to leave his friends, his school, or his sports teams.
I understand, I really do. I am praying for guidance and God's peace, but my gut right now is telling me that he needs to go to this school.
Last night, Tanner told me: "Mom, the only thing I want for Christmas is to not go to that school." He was half-serious, but he looked at me with those big green eyes and I wanted to melt. I said, "Tanner, don't even try to play me like that."
Tuesday, October 25, 2011
Edumacation
Tanner started losing his sight at the end of last school year. Not wanting to believe it was anything more serious than some inflammation or something, I told his school that he was having "eye problems." How naive I was! I had hope that his problems were a transitory thing, and that he would be back to normal by the time school started in August.
When it became apparent that this was not going to happen, I began calling and emailing anybody that I could think of to let them know that a blind kid was going to be in class in the fall, and what were they going to do about it?
I got no response. Because the counselors didn't get back to school until the beginning of August, there was no one I could tell. I also kept calling the Division of Blind Services, wondering what it was, exactly, that I was supposed to be doing.
The Division of Blind Services was slow to call me back. They sent me paperwork which I filled out and sent back, but when I called back to inquire about said paperwork, they said they never received it and I would need to re-send. Sigh.
When I finally met with one of the counselors before school, she took one look at Tanner's course load - he's a smart one, that boy - and she asked if Tanner was going to consider a less rigorous load. He immediately said, "No."
So I thought the school had things well in hand. Bwahahahaha! Tanner spent the first nine weeks without any of the tools necessary for him to learn. His AP Geometry teacher called me one evening, concerned because Tanner came to class and put his head down the whole time. There was nothing else for him to do. The teacher spent most of the class drawing angles on the board, asking the class to comment on the work. Tanner could not see. How was he supposed to comment?
I realized recently that this is a small glimpse of the "disabled" world. Tanner does not want things handed to him on a silver platter; he wants to learn just like any other student. Some of his teachers are gifted - they may not have had a visually impaired student before, but they knew he would have to be taught auditorily. Bless them.
Somewhere along the way, we heard about the Florida School for the Deaf and the Blind in St. Augustine. This wonderful school gets its own post. (to be continued)
When it became apparent that this was not going to happen, I began calling and emailing anybody that I could think of to let them know that a blind kid was going to be in class in the fall, and what were they going to do about it?
I got no response. Because the counselors didn't get back to school until the beginning of August, there was no one I could tell. I also kept calling the Division of Blind Services, wondering what it was, exactly, that I was supposed to be doing.
The Division of Blind Services was slow to call me back. They sent me paperwork which I filled out and sent back, but when I called back to inquire about said paperwork, they said they never received it and I would need to re-send. Sigh.
When I finally met with one of the counselors before school, she took one look at Tanner's course load - he's a smart one, that boy - and she asked if Tanner was going to consider a less rigorous load. He immediately said, "No."
So I thought the school had things well in hand. Bwahahahaha! Tanner spent the first nine weeks without any of the tools necessary for him to learn. His AP Geometry teacher called me one evening, concerned because Tanner came to class and put his head down the whole time. There was nothing else for him to do. The teacher spent most of the class drawing angles on the board, asking the class to comment on the work. Tanner could not see. How was he supposed to comment?
I realized recently that this is a small glimpse of the "disabled" world. Tanner does not want things handed to him on a silver platter; he wants to learn just like any other student. Some of his teachers are gifted - they may not have had a visually impaired student before, but they knew he would have to be taught auditorily. Bless them.
Somewhere along the way, we heard about the Florida School for the Deaf and the Blind in St. Augustine. This wonderful school gets its own post. (to be continued)
Saturday, October 22, 2011
Back to Reality
We came home from the Florida Keys rested, dejected. I had been in a fog since May 24 - will I ever forget that day? Not likely.
After the Dr. Sedwick debacle, we searched for another pediatric neuro-ophth while awaiting the results from the genetic testing lab. I was apparently doing things wrong; the way to get an appointment with a specialist is to get the OK from insurance and then make the appointment.
When we finally saw Dr. Auerbach in mid-July, Tanner was now legally blind. I was hoping that he would have an answer other than Leber's Hereditary Optic Neuropathy, although all the literature I had read up until then was pointing in that direction. Dr. Auerbach wasn't convinced that it was LHON, and wanted to run some blood tests. Finally! A physician who was doing something tangible.
It wasn't all good news, however. I asked Dr. Auerbach if he could release Tanner for sports, which is all he really cared about. "Are you kidding? He would get his ass kicked!" I replied, "Then let him! This is all he wants to do, and he needs a release from a physician."
I did not win. Tanner did not get the release. In the middle of all of this, however, I contacted a very caring person involved with our insurance company. I explained to her that I was not satisfied with the doctors here, and I wanted to take Tanner to Bascom Palmer Eye Institute, affiliated with the University of Miami. She expedited the paperwork, and we took Tanner to Bascom Palmer in August.
Bascom Palmer is amazing. It really makes you realize what a podunk you live in when you go somewhere like that. Everyone from registration to the technicians were great. And right away, Tanner received a conclusive diagnosis of LHON. We met Dr. John Guy, a crazy smart doc who is working under a $6 million grant from NIH on a specific mutation of LHON. He pulled out his Iphone and showed us images of the optic nerves of the lab animals that he has been testing. Super geek, but I was awed. I have been in the presence of many intelligent people in my life, but this man is Nobel Prize-worthy smart.
I cried when I finally got a diagnosis for my son. There is no cure or treatment for the disease, but it is also not life-threatening. But how his life had changed in two short months. Tanner took it all in stride, and was happy that Dr. Guy wrote him a release: "Cleared for all physical activity, except motor-vehicle driving." He's funny, that Dr. Guy.
After the Dr. Sedwick debacle, we searched for another pediatric neuro-ophth while awaiting the results from the genetic testing lab. I was apparently doing things wrong; the way to get an appointment with a specialist is to get the OK from insurance and then make the appointment.
When we finally saw Dr. Auerbach in mid-July, Tanner was now legally blind. I was hoping that he would have an answer other than Leber's Hereditary Optic Neuropathy, although all the literature I had read up until then was pointing in that direction. Dr. Auerbach wasn't convinced that it was LHON, and wanted to run some blood tests. Finally! A physician who was doing something tangible.
It wasn't all good news, however. I asked Dr. Auerbach if he could release Tanner for sports, which is all he really cared about. "Are you kidding? He would get his ass kicked!" I replied, "Then let him! This is all he wants to do, and he needs a release from a physician."
I did not win. Tanner did not get the release. In the middle of all of this, however, I contacted a very caring person involved with our insurance company. I explained to her that I was not satisfied with the doctors here, and I wanted to take Tanner to Bascom Palmer Eye Institute, affiliated with the University of Miami. She expedited the paperwork, and we took Tanner to Bascom Palmer in August.
Bascom Palmer is amazing. It really makes you realize what a podunk you live in when you go somewhere like that. Everyone from registration to the technicians were great. And right away, Tanner received a conclusive diagnosis of LHON. We met Dr. John Guy, a crazy smart doc who is working under a $6 million grant from NIH on a specific mutation of LHON. He pulled out his Iphone and showed us images of the optic nerves of the lab animals that he has been testing. Super geek, but I was awed. I have been in the presence of many intelligent people in my life, but this man is Nobel Prize-worthy smart.
I cried when I finally got a diagnosis for my son. There is no cure or treatment for the disease, but it is also not life-threatening. But how his life had changed in two short months. Tanner took it all in stride, and was happy that Dr. Guy wrote him a release: "Cleared for all physical activity, except motor-vehicle driving." He's funny, that Dr. Guy.
Sunday, October 9, 2011
Time for a Break!
After Tanner's rotten neuro-ophth refused to do 15 minutes of paperwork for him to get the genetic testing, we kicked them to the curb. After some thought, we asked Tanner's primary to do the testing for us, and of course he agreed. God Bless Dr. Rosales and Lisa.
The testing would take eight to ten weeks. We had nothing but time, so where better to spend it than in the beautiful Florida Keys! Sure, we have money problems, but we got a great deal on a hotel, and I figured that if Tanner were going completely blind, I wanted him to have memories.
The best part about the Keys is Bahia Honda, a state park with sugary sandy beaches, and warm, gentle surf that beckons you to spend the day. We found a live conch, but of course had to put it back because they are protected.
It was when we were in the Keys that I realized how much Tanner's vision had failed. He couldn't read menus, see his food, or even read his text messages. He could reply to the texts, because he had his keyboard memorized, but it was just very sad watching him. It was sad for me, because I saw the death of all the hopes and dreams I had for my son - Tanner wanted to join the service or be a police officer, or join the FBI. I didn't have the heart to tell him how difficult it was going to be to do any of those things.
Tanner was also deprived of his greatest joy, playing sports. His wrestling coach would not allow him to even practice with the team, lest something jiggle whatever was making him go blind. At this point, we still did not have a diagnosis. Tanner told me that he did not want me mentioning his blindness during our trip to the Keys - I was so bad; every day, I would put Tanner through my own informal "tests." Can you see this? Can you read that? I asked him several times a day, trying to figure out what he could see. Bless Tanner, he never lost his patience with me.
I did cry on the Fourth of July. We had made arrangements to be at a big beachside hotel to view the fireworks. Our family took position on the pier, where the show was spectacular. You could almost reach out and touch the fiery display. Everybody clapped at the end, out of sheer joy for the lights, the noise, the smell of gunpowder.
Why are they clapping for fireworks? I asked myself. Don't they know my son is going blind? An irrational, angry thought, but I couldn't help myself.
The testing would take eight to ten weeks. We had nothing but time, so where better to spend it than in the beautiful Florida Keys! Sure, we have money problems, but we got a great deal on a hotel, and I figured that if Tanner were going completely blind, I wanted him to have memories.
The best part about the Keys is Bahia Honda, a state park with sugary sandy beaches, and warm, gentle surf that beckons you to spend the day. We found a live conch, but of course had to put it back because they are protected.
It was when we were in the Keys that I realized how much Tanner's vision had failed. He couldn't read menus, see his food, or even read his text messages. He could reply to the texts, because he had his keyboard memorized, but it was just very sad watching him. It was sad for me, because I saw the death of all the hopes and dreams I had for my son - Tanner wanted to join the service or be a police officer, or join the FBI. I didn't have the heart to tell him how difficult it was going to be to do any of those things.
Tanner was also deprived of his greatest joy, playing sports. His wrestling coach would not allow him to even practice with the team, lest something jiggle whatever was making him go blind. At this point, we still did not have a diagnosis. Tanner told me that he did not want me mentioning his blindness during our trip to the Keys - I was so bad; every day, I would put Tanner through my own informal "tests." Can you see this? Can you read that? I asked him several times a day, trying to figure out what he could see. Bless Tanner, he never lost his patience with me.
I did cry on the Fourth of July. We had made arrangements to be at a big beachside hotel to view the fireworks. Our family took position on the pier, where the show was spectacular. You could almost reach out and touch the fiery display. Everybody clapped at the end, out of sheer joy for the lights, the noise, the smell of gunpowder.
Why are they clapping for fireworks? I asked myself. Don't they know my son is going blind? An irrational, angry thought, but I couldn't help myself.
Thursday, September 29, 2011
Doctor Number Four, part Two
High anxiety for the next few weeks. Tanner received an MRI, and then we had to wait a few days for the radiologist's report. They were looking for a tumor around his optic nerve; if a tumor grew there, they said, it would clamp off the optic nerve, causing his blindness. They were also looking for signs of multiple sclerosis, which would have appeared on the MRI as lesions.
Pretty heady stuff, no pun intended. The waiting was excruciating for me, but Tanner didn't seem too bothered by it. We got the results just before the weekend, from the Doctor's assistant. Everything was negative. What now?
Well, the doctor still wanted to rule out any demyelinating disease like MS, so she ordered a spinal tap. Tanner was not very happy about that - he didn't want anybody injecting his spine.
After talking with my brother Damian, an anesthesiologist, Tanner seemed to feel a little better about the procedure. He was taking everything like a champ.
And the spinal tap was uneventful. They whisked him away, and then 30 minutes later he was back. And hungry.
So I fed him, took him home, and we waited for the results. Negative. His neuro-ophth wanted Tanner to have the genetic testing for Leber's Hereditary Optic Neuropathy. I went through the process of submitting the forms, but our insurance does not do genetic testing for non=cancer-related diseases.
I did some online sleuthing, and found a not-for-profit genetic testing lab in Iowa that did the test for $100 v. $1,500. It would require some administrative work on the part of the prescribing physician, but the results would be the same.
This lab does thousands, maybe even hundreds of thousands of these tests each year. They have it down to --you should pardon the expression--a science.
After giving my the runaround for several days, the neuro-ophth's assistant called me one day and told me that Dr. Sedwick would not, repeat NOT complete the online form necessary for Tanner to receive the genetic testing. She was concerned about giving her email address out, blah blah blah.
"So what you're telling me, then," I fumed, "is that Dr. Sedwick does not wish to be an advocate for my child?"
I had misplaced anger, and there was no where for it to go. What a freakin' hypocrite of a medical professional. All along, she had been telling us that Tanner likely had this rare genetic disorder, but she would not help us by ordering the test from a not-for-profit lab. I still get mad when I think about it.
Pretty heady stuff, no pun intended. The waiting was excruciating for me, but Tanner didn't seem too bothered by it. We got the results just before the weekend, from the Doctor's assistant. Everything was negative. What now?
Well, the doctor still wanted to rule out any demyelinating disease like MS, so she ordered a spinal tap. Tanner was not very happy about that - he didn't want anybody injecting his spine.
After talking with my brother Damian, an anesthesiologist, Tanner seemed to feel a little better about the procedure. He was taking everything like a champ.
And the spinal tap was uneventful. They whisked him away, and then 30 minutes later he was back. And hungry.
So I fed him, took him home, and we waited for the results. Negative. His neuro-ophth wanted Tanner to have the genetic testing for Leber's Hereditary Optic Neuropathy. I went through the process of submitting the forms, but our insurance does not do genetic testing for non=cancer-related diseases.
I did some online sleuthing, and found a not-for-profit genetic testing lab in Iowa that did the test for $100 v. $1,500. It would require some administrative work on the part of the prescribing physician, but the results would be the same.
This lab does thousands, maybe even hundreds of thousands of these tests each year. They have it down to --you should pardon the expression--a science.
After giving my the runaround for several days, the neuro-ophth's assistant called me one day and told me that Dr. Sedwick would not, repeat NOT complete the online form necessary for Tanner to receive the genetic testing. She was concerned about giving her email address out, blah blah blah.
"So what you're telling me, then," I fumed, "is that Dr. Sedwick does not wish to be an advocate for my child?"
I had misplaced anger, and there was no where for it to go. What a freakin' hypocrite of a medical professional. All along, she had been telling us that Tanner likely had this rare genetic disorder, but she would not help us by ordering the test from a not-for-profit lab. I still get mad when I think about it.
Wednesday, September 21, 2011
Doctor Number Four
I was dreading the trip to Doctor Number Four, a neuro-ophthalmalogist in Winter Park. Her office - in a mid-rise, older office building, was small and crammed with all kinds of artwork. Her efficient receptionist fixed me a cup of hazelnut coffee from one of those machines that makes it a cup at a time.
The night before, I had Googled "optic nerve atrophy in teen males" and up popped a disease I had never heard of : Leber's Hereditary Optic Neuropathy. I scanned the article, and what I retained was "rare," "permanent blindness," "no cure." Stuff like that. Enough to convince me that I did not want Tanner to have that. And how could he? It was rare and genetic: nobody in my family had such a thing.
I didn't like the doctor. When I went to take notes on what she was saying, she held out her hand and said she would prefer that I listen to her. She said she was going to order an MRI - to rule out tumors and lesions, and then, if that were negative, she would order a spinal tap to rule out multiple sclerosis. But really, she said, she suspected something else. "What, LHON?" I asked.
The doc asked me how I could possibly know about that and I introduced her to Google. Seriously? Don't all people Google their symptoms?
I then called my mom and told her about the difficulties Tanner had been having, being careful to say vision problems instead of blindness. I broke down on the phone anyway.
And of course, after the appointment, Tanner and I went to lunch.
Monday, September 19, 2011
Doctor Number Three
During any crisis situation, I believe most people are able to tap into reserves that allow them to continue functioning at a certain level. Well, that's what I used to believe. The truth is, you have to dig deep for understanding and acceptance and the will to go on.
At Tanner's next doctor, a retina specialist named Elias Mavrofridas (Dr. Mav, for short), we went through the same routine of the past two days. There were several new tests added, including one that required the administering of an IV medicine, to facilitate an imaging device that would take pictures of his retina and optic nerve.
Dr. Mav showed me a picture of Tanner's right optic nerve, and he said that he believed this was the culprit. He explained how the optic nerve appeared atrophied, and that meant that Tanner's blindness had happened a while ago. He said that teens are good at compensating, and that even though Tanner noticed it just a few days ago, it was not a new problem.
He said that even if Tanner had noticed it when it first happened, that there was nothing that could have been done to help it. Now, we had to go to the fourth doctor, a neuro-ophthalmalogist. It hit me then. Tanner was blind in his right eye. Three doctors didn't know why. What was wrong with my baby? I began to cry, in great, gasping sobs.
Dr. Mav tried to console me. Look, he said. I see patients all the time who are going totally blind, at least he still has sight in his left eye.
"Doctor," I said. "I understand that you are trying to give me a glass -half full approach to this. But this is MY glass."
At the time, I thought I was clever. Now I realize that he didn't know what to do with a crying woman.
At Tanner's next doctor, a retina specialist named Elias Mavrofridas (Dr. Mav, for short), we went through the same routine of the past two days. There were several new tests added, including one that required the administering of an IV medicine, to facilitate an imaging device that would take pictures of his retina and optic nerve.
Dr. Mav showed me a picture of Tanner's right optic nerve, and he said that he believed this was the culprit. He explained how the optic nerve appeared atrophied, and that meant that Tanner's blindness had happened a while ago. He said that teens are good at compensating, and that even though Tanner noticed it just a few days ago, it was not a new problem.
He said that even if Tanner had noticed it when it first happened, that there was nothing that could have been done to help it. Now, we had to go to the fourth doctor, a neuro-ophthalmalogist. It hit me then. Tanner was blind in his right eye. Three doctors didn't know why. What was wrong with my baby? I began to cry, in great, gasping sobs.
Dr. Mav tried to console me. Look, he said. I see patients all the time who are going totally blind, at least he still has sight in his left eye.
"Doctor," I said. "I understand that you are trying to give me a glass -half full approach to this. But this is MY glass."
At the time, I thought I was clever. Now I realize that he didn't know what to do with a crying woman.
Sunday, September 18, 2011
On to the second doctor
The next day following the emergency room visit came pretty darn early. I had to wake Tanner up, and that was scary. Irrationally scary, I should say. What if the doctors had missed something the night before, and he had a massive intra-cranial hemmorhage that had now killed him?
But no, it was still the same sleepy Tanner that had always been notoriously hard to awaken. "Is there any change? Can you see any better/worse? How do you feel?" The words were barely out of my mouth when I tried to stop myself. Full panic mode had not set in yet; we were seeing another doctor who would give us a diagnosis/treatment/medicine - something. Right?
Kevin Barber, MD, in DeLand, seemed competent enough to examine my son. The apparati he used to perform a series of tests on my son were appropriately high-tech enough. I knew something was dreadfully wrong, however, when he used a low, professional sounding voice to describe a finding to his technician. Whatever it was - and I can't remember it now - it didn't sound good.
"Well," Dr. Barber said, "It's not a detached retina." But, he added, he did not know what it was. He said he was referring Tanner to a physician in Lake Mary who was "the smartest person" he knew.
Tanner did not seem concerned with his eyesight. He was more concerned with answering his text messages. I, on the other hand, was growing increasingly worried. What was wrong? Why was Tanner going blind?
Tuesday, September 13, 2011
Tanner: The Early Years
Tanner was born a scant 18 months after his brother Casey, and we barely had time to wrap our minds around the idea of another baby. The pregnancy, like my other two, was non-eventful.
Tanner came barreling into the world at nearly ten pounds. He was perfect in every way. He was a good eater, and he loved to be held, curling his chubby arm around a nearby neck.
He did have a couple of strange, if non-life-threatening medical issues. Shortly after he was born, he developed a hydrocele in his testicles. This caused them to swell to 4-5 times their normal size. Not to worry, said the doc. The swelling will go down soon.
He also had a tear duct that would clog regularly, and this would cause his eye to swell shut. Warm compresses helped him, but I began to doubt my ability to care for my small charge.
Tanner also acquired something we would call the "Unicorn." As he was learning to walk, he would occasionally stumble and hit his head in the middle of his forehead. For several months, it was a perma-bump.
When he was about 2, his pediatrician told me he was concerned about Tanner's delayed speech development. This could be caused, in part, by Tanner's older siblings doing the talking for him. "Tanner wants some juice," was a refrain we heard from Casey many times.
Soon, however, Tanner was talking up a storm. Video from a trip to the beach shows a loquacious Tanner asking questions, barking directives. "Mommy, where does the ocean come from? Mommy, could you please hurry and open my Slim Jim?"
Tanner was always hungry. We kidded that he was like the puppy in 101 Dalmatians that says, "I'm hungry, Mother. I really am."
One time, I was having a nice moment with Tanner. He was sitting next to me, and we were chatting - rather, Tanner was chatting - and he looked up at me and said, "Do you know you have a vampire tooth?"
Apparently, teeth had a special fascination for Tanner at that age, because shortly after the vampire tooth episode, we were in line at a store. A man was behind us, talking about something to someone. Blah Blah. I didn't realize that Tanner was observing him. "Mommy," Tanner said. "That man's missing a tooth!"
Perhaps my most favorite Tanner-ism, however, is one day, when I was taking a nap, I asked Tanner if he wanted to cuddle with me for a minute. He said sure, and climbed up into bed with me. After a bit, he said, "Has it been a midnit yet?" I said yes, and he got down out of bed.
Tanner came barreling into the world at nearly ten pounds. He was perfect in every way. He was a good eater, and he loved to be held, curling his chubby arm around a nearby neck.
He did have a couple of strange, if non-life-threatening medical issues. Shortly after he was born, he developed a hydrocele in his testicles. This caused them to swell to 4-5 times their normal size. Not to worry, said the doc. The swelling will go down soon.
He also had a tear duct that would clog regularly, and this would cause his eye to swell shut. Warm compresses helped him, but I began to doubt my ability to care for my small charge.
Tanner also acquired something we would call the "Unicorn." As he was learning to walk, he would occasionally stumble and hit his head in the middle of his forehead. For several months, it was a perma-bump.
When he was about 2, his pediatrician told me he was concerned about Tanner's delayed speech development. This could be caused, in part, by Tanner's older siblings doing the talking for him. "Tanner wants some juice," was a refrain we heard from Casey many times.
Soon, however, Tanner was talking up a storm. Video from a trip to the beach shows a loquacious Tanner asking questions, barking directives. "Mommy, where does the ocean come from? Mommy, could you please hurry and open my Slim Jim?"
Tanner was always hungry. We kidded that he was like the puppy in 101 Dalmatians that says, "I'm hungry, Mother. I really am."
One time, I was having a nice moment with Tanner. He was sitting next to me, and we were chatting - rather, Tanner was chatting - and he looked up at me and said, "Do you know you have a vampire tooth?"
Apparently, teeth had a special fascination for Tanner at that age, because shortly after the vampire tooth episode, we were in line at a store. A man was behind us, talking about something to someone. Blah Blah. I didn't realize that Tanner was observing him. "Mommy," Tanner said. "That man's missing a tooth!"
Perhaps my most favorite Tanner-ism, however, is one day, when I was taking a nap, I asked Tanner if he wanted to cuddle with me for a minute. He said sure, and climbed up into bed with me. After a bit, he said, "Has it been a midnit yet?" I said yes, and he got down out of bed.
Monday, September 5, 2011
The long wait
When the triage nurse finally called us back, she asked the question that was repeated a million times over the next few months. "What brings you here today?"
Yes, I understand the need for repetition. Histories must be taken over and over again so each caregiver can be alert for anything that might have been left out.
Here's how Tanner's history usually went: On May 24, Tanner came home from cross-country practice ("and weight-lifting, Mom. Don't forget I was bench-pressing"), and said his vision was blurry in his right eye. He covered his eye with his hand, testing it out, and it was still blurry.
See any stars? Any headaches? Those were the top two questions. Dizzy? No, no, and no.
Tanner was taken back to get a CT scan. I didn't go with him, just sat looking at the zig-zagged television screen. Apparently Tanner's eyes weren't the only thing not working.
There were two nurses sitting outside our glass-walled room. I became acutely aware of what they were saying: " ... detached retina ... surgery ..." I stuck my head outside. "You think it might be a detached retina?" This actually brought me some relief. There was a diagnosis. I had heard about detached retinas, I knew they could be repaired, somehow. Tanner would be OK.
No, the nurses said. They were just talking about possible causes. They wouldn't make a diagnosis.That was the doctor's job.
When Tanner came back, all he wanted to do was sleep. It was after midnight by then. I figured he wouldn't be going to school, but I didn't know what our next step was.
The doctor came back into the room. She had the results back from the CT scan. No sign of a bleed, but she did not have a diagnosis. She suspected a detached retina, but referred us to a local ophthalmalogist. This was an urgent situation, but not an emergent one, she said. Tanner would not have to be admitted to the hospital.
On the way home, Tanner was hungry. I bought him Taco Bell.
Yes, I understand the need for repetition. Histories must be taken over and over again so each caregiver can be alert for anything that might have been left out.
Here's how Tanner's history usually went: On May 24, Tanner came home from cross-country practice ("and weight-lifting, Mom. Don't forget I was bench-pressing"), and said his vision was blurry in his right eye. He covered his eye with his hand, testing it out, and it was still blurry.
See any stars? Any headaches? Those were the top two questions. Dizzy? No, no, and no.
Tanner was taken back to get a CT scan. I didn't go with him, just sat looking at the zig-zagged television screen. Apparently Tanner's eyes weren't the only thing not working.
There were two nurses sitting outside our glass-walled room. I became acutely aware of what they were saying: " ... detached retina ... surgery ..." I stuck my head outside. "You think it might be a detached retina?" This actually brought me some relief. There was a diagnosis. I had heard about detached retinas, I knew they could be repaired, somehow. Tanner would be OK.
No, the nurses said. They were just talking about possible causes. They wouldn't make a diagnosis.That was the doctor's job.
When Tanner came back, all he wanted to do was sleep. It was after midnight by then. I figured he wouldn't be going to school, but I didn't know what our next step was.
The doctor came back into the room. She had the results back from the CT scan. No sign of a bleed, but she did not have a diagnosis. She suspected a detached retina, but referred us to a local ophthalmalogist. This was an urgent situation, but not an emergent one, she said. Tanner would not have to be admitted to the hospital.
On the way home, Tanner was hungry. I bought him Taco Bell.
Wednesday, August 24, 2011
Out of the blue
On May 24, 2011, life as I know changed for me, but more importantly, it changed for my kind, wonderful, loving son Tanner.
On that night, I happened to meet Tanner, 16, in the street in front of our house. He was getting dropped off from cross country practice, and I was just starting to take our dog Schatzi for a walk.
"Mom," said Tanner, "My vision is blurry in my right eye." He said this to me with a smile on his face, almost as though he were playing a bad joke on me.
He had been running on the track, had heard another runner coming up along his right side, and wasn't able to see him until he turned his head. He realized his vision was blurry when he covered his good eye with his hand.
Tanner, our youngest child, had been blessed with perfect vision in his beautiful green eyes. I would always ask him to read something far away, just to make him feel important. I have been near-sighted for as long as I can remember.
So when Tanner told me that he couldn't see, I did the mommy thing and peered into both of his eyes, almost as if I expected to find a twig stuck in there. I couldn't see anything, of course, and the alarm bells began to jangle furiously in my head.
"I think we need to go to the hospital," I told Tanner. Together, we walked back to the house. Schatzi, who had just begun her walk, also seemed confused by the abrupt turnaround.
Gary, my husband, was sitting at the dining room table, reading a newspaper, when we came back in. I told him that Tanner had something wrong with his eye. Gary looked into his eyes, just as I had, but found nothing out of the ordinary.
I think I told Tanner something silly, like "go take a shower," somehow thinking that a nice hot shower would make everything better. He wasn't in pain, he said. He was hungry. Gary didn't think he should go to the hospital, that he would be better after a good night's sleep.
I insisted on taking Tanner to the local hospital, where I figured we'd have to wait a while. I work in a non-clinical area of the hospital, and I wasn't expecting any favors. After all, Tanner wasn't bleeding, he wasn't throwing up, and he appeared to be strong and healthy - what could possibly be wrong with him?
We sat next to a sad looking family with a small child who was weakly puking into a pink bucket. "Don't touch anything," I hissed at Tanner. The old joke is that hospitals are no place for sick people.
On that night, I happened to meet Tanner, 16, in the street in front of our house. He was getting dropped off from cross country practice, and I was just starting to take our dog Schatzi for a walk.
"Mom," said Tanner, "My vision is blurry in my right eye." He said this to me with a smile on his face, almost as though he were playing a bad joke on me.
He had been running on the track, had heard another runner coming up along his right side, and wasn't able to see him until he turned his head. He realized his vision was blurry when he covered his good eye with his hand.
Tanner, our youngest child, had been blessed with perfect vision in his beautiful green eyes. I would always ask him to read something far away, just to make him feel important. I have been near-sighted for as long as I can remember.
So when Tanner told me that he couldn't see, I did the mommy thing and peered into both of his eyes, almost as if I expected to find a twig stuck in there. I couldn't see anything, of course, and the alarm bells began to jangle furiously in my head.
"I think we need to go to the hospital," I told Tanner. Together, we walked back to the house. Schatzi, who had just begun her walk, also seemed confused by the abrupt turnaround.
Gary, my husband, was sitting at the dining room table, reading a newspaper, when we came back in. I told him that Tanner had something wrong with his eye. Gary looked into his eyes, just as I had, but found nothing out of the ordinary.
I think I told Tanner something silly, like "go take a shower," somehow thinking that a nice hot shower would make everything better. He wasn't in pain, he said. He was hungry. Gary didn't think he should go to the hospital, that he would be better after a good night's sleep.
I insisted on taking Tanner to the local hospital, where I figured we'd have to wait a while. I work in a non-clinical area of the hospital, and I wasn't expecting any favors. After all, Tanner wasn't bleeding, he wasn't throwing up, and he appeared to be strong and healthy - what could possibly be wrong with him?
We sat next to a sad looking family with a small child who was weakly puking into a pink bucket. "Don't touch anything," I hissed at Tanner. The old joke is that hospitals are no place for sick people.
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