Joey patches 4 hours a day, 6 days a week. We give him Sunday off.
The first year of patching included many tantrums, wrestling matches, "patch-pinches (Joey trying to pull it off), soggy patches from many tears, and keeping conversations going in the car so he wouldn't fall asleep with his patch on. Worst of all, though, was his intense anger at me because I was the one doing this to him.
The second year, well, he still hates it. But nowadays, even though he dreads it and still kinda whines about it, he knows he HAS to do it - that he doesn't have a choice. He'll whine for maybe 15 seconds, and then goes and plays. I attribute this change to the fact that when I just couldn't take it anymore, I asked people to pray for us. "Coincidentally", at that point, he really seemed to fall into a routine with it.
When we first started patching, he'd just wanted to curl up and go to sleep when he had it on. I had to get wise and keep him occupied. His favorite thing to do is a card game with pairs of pictures with which we play "memory". We also got him a "Leapster", a little electronic learning game. That keeps his little eye busy and his little mind awake. Other things we do are look through books and discuss the pictures, Play-Do, flash cards, and when all else fails, we go outside and play.
Another thing I wasn't sure about at first was whether or not I should take him places when he was wearing his patch. I wondered if going to the grocery store or mall embarrased him. I finally decided that at his age, it really didn't. In fact, running errands made patch time fly by quicker and stimulated his eye to look at all kinds of different things. Sometimes people just stare, sometimes people ask questions. Sometimes I launch off into a full explanation of Coats' Disease. Sometimes I just say he needs to strengthen his weak eye. I figured he would take his cues off of me - if I acted offended, he'd think something was wrong with wearing the patch. But if I answered matter of factly, he'd just assume it was a fact of life.
Patching is tough, no doubt about it. Frustration builds up. Every now and then I just have to go into a corner to cry. And when I'm done, I clean my face and thank God because I know things could be worse. I'm just patching him. I can do that.
Saturday, April 23, 2005
Wednesday, April 20, 2005
Coats' Treatment - Laser Surgery
(To read the story from the beginning, see the first blog and then read up)
In Dec 2003, we met with Dr. T at the Childrens Hospital for the first time. His recommendation was laser surgery to seal off the leaking blood vessels. After that, it would be a matter of waiting for the accumulated cholesterol (exudate) to (ideally) be absorbed into the body. He also told us that we should start "patching" after the surgery. Joey is a hawk-eye with his good eye, so basically, his brain had "turned off" his Coats' eye and compensated with his good eye. The patching would "train" his brain to begin using the Coats' eye.
So, with an actual diagnosis and a game plan, Craig was very encouraged after this appointment. I, on the other hand, felt a little depressed. To be honest, my emotions had been all over the place since this all started. I'd been fearful, relieved, nervous, sad, encouraged, depressed, etc. I felt sad that Joey's eyes weren't perfect. But then disgusted with myself that I wasn't overflowing with joy since it wasn't retinoblastoma. Craig told me that I was happy it wasn't retinoblastoma, but still sad that he had Coats, and that those conflicting emotions were confusing me. That made sense.
We scheduled the surgery for January. We had decided to wait until after the holidays, since Joey was just LOVING Christmas that year. And since it was cold and flu season, we had to pretty much live in a "bubble" for three weeks. If he got sick, they'd have to reschedule the surgery. So, we were homebound, and if we did go anywhere, we made sure we had a steady supply of Purell.
The surgery was pretty much the same routine as the exam under anesthesia: We arrived at the hospital, checked in, got the little purple pajamas, waited in the toy room until they called us up. Once again, I went into the OR and held him until he was out.
At one point during the surgery, Dr. T came out and asked us if we wanted a steroid injection. As I understood it, this would speed up the break-up of the exudate. We talked it over briefly and agreed to go ahead with that. When it was over, Dr. T said it all went well. In the recovery room, Joey had his eye patched and taped and was pretty sleepy.
On the drive home, he woke up and touched the patch and started to cry. I explained to him that there was "medicine in his eye" and that the patch would make sure the medicine stayed in his eye (not exactly the truth, but how do you explain laser surgery? I felt this was easier for him to grasp) I explained that he would have it on for the rest of the night and that in the morning, we'd go so the doctor could take it off. The next day, Dr. T took off the patch and took a look. His little eye was red, but Dr. T said everything looked good. His eye was very red for about a week. We were given some drops to put in his eye - one tube for the morning and one tube for the evening. He hates drops, and I'd struggle with him to get them in his eye. I finally got wise and would wait til he fell asleep and then go in and open his eyes and put the drops in for his evening dose. That way, I only had to struggle with him for the morning drops.
FEBRUARY: At our follow-up appointment, Dr. T seemed encouraged that the stuff in there was starting to decrease. He told me to start patching him 2 hours per day. The first time I patched him, I could see his little eye all over the place, struggling to focus. But he could maneuver around ok, even ride his bike in the back yard. I was surprised.
MARCH: Dr. T said it looked like the exudate was still decreasing. He was surprised and pleased to hear that Joey could maneuver around as well as he could while patched. He told me to increase the daily patch time to 4 hours.
MAY: Dr. T said the stuff in there was only SLIGHTLY decreased. He would give it six more weeks, and if there was no significant improvement, then we should start thinking about another exam under anesthesia to see if there was any more leakage from the blood vessels. For the next six weeks, Craig and I fasted once a week and prayed for Joey to not need another surgey.
JUNE: Dr. T said Joey's eye had improved! Yay! BUT..it was still possible that we'd have to do the exam under anesthesia again eventually, but as long as it was improving, we'd just watch and wait.
AUGUST: The exudate was continuing to decrease. Joey was checked to see if he needed glasses and we were told that his vision had improved slightly, and that he didn't need glasses for the vision he does have. From what I can tell, it seems that Joey has areas in his field of vision that he cant see. He struggles to focus on things. On other websites, I heard it described as "donut" vision. We think he has peripheral vision. We'll won't know what he can see until he's old enough to explain it to us.
NOVEMBER: Dr. T said that a lot of the exudate had decreased, but that he still had a big blob of cholesterol sitting on his retina. Which I thought might mean that as that blob breaks up, Joey's vision might improve greatly. On the other hand, that cholesterol sitting there could be toxic to his retina.
2004 was quite a year.
In Dec 2003, we met with Dr. T at the Childrens Hospital for the first time. His recommendation was laser surgery to seal off the leaking blood vessels. After that, it would be a matter of waiting for the accumulated cholesterol (exudate) to (ideally) be absorbed into the body. He also told us that we should start "patching" after the surgery. Joey is a hawk-eye with his good eye, so basically, his brain had "turned off" his Coats' eye and compensated with his good eye. The patching would "train" his brain to begin using the Coats' eye.
So, with an actual diagnosis and a game plan, Craig was very encouraged after this appointment. I, on the other hand, felt a little depressed. To be honest, my emotions had been all over the place since this all started. I'd been fearful, relieved, nervous, sad, encouraged, depressed, etc. I felt sad that Joey's eyes weren't perfect. But then disgusted with myself that I wasn't overflowing with joy since it wasn't retinoblastoma. Craig told me that I was happy it wasn't retinoblastoma, but still sad that he had Coats, and that those conflicting emotions were confusing me. That made sense.
We scheduled the surgery for January. We had decided to wait until after the holidays, since Joey was just LOVING Christmas that year. And since it was cold and flu season, we had to pretty much live in a "bubble" for three weeks. If he got sick, they'd have to reschedule the surgery. So, we were homebound, and if we did go anywhere, we made sure we had a steady supply of Purell.
The surgery was pretty much the same routine as the exam under anesthesia: We arrived at the hospital, checked in, got the little purple pajamas, waited in the toy room until they called us up. Once again, I went into the OR and held him until he was out.
At one point during the surgery, Dr. T came out and asked us if we wanted a steroid injection. As I understood it, this would speed up the break-up of the exudate. We talked it over briefly and agreed to go ahead with that. When it was over, Dr. T said it all went well. In the recovery room, Joey had his eye patched and taped and was pretty sleepy.
On the drive home, he woke up and touched the patch and started to cry. I explained to him that there was "medicine in his eye" and that the patch would make sure the medicine stayed in his eye (not exactly the truth, but how do you explain laser surgery? I felt this was easier for him to grasp) I explained that he would have it on for the rest of the night and that in the morning, we'd go so the doctor could take it off. The next day, Dr. T took off the patch and took a look. His little eye was red, but Dr. T said everything looked good. His eye was very red for about a week. We were given some drops to put in his eye - one tube for the morning and one tube for the evening. He hates drops, and I'd struggle with him to get them in his eye. I finally got wise and would wait til he fell asleep and then go in and open his eyes and put the drops in for his evening dose. That way, I only had to struggle with him for the morning drops.
FEBRUARY: At our follow-up appointment, Dr. T seemed encouraged that the stuff in there was starting to decrease. He told me to start patching him 2 hours per day. The first time I patched him, I could see his little eye all over the place, struggling to focus. But he could maneuver around ok, even ride his bike in the back yard. I was surprised.
MARCH: Dr. T said it looked like the exudate was still decreasing. He was surprised and pleased to hear that Joey could maneuver around as well as he could while patched. He told me to increase the daily patch time to 4 hours.
MAY: Dr. T said the stuff in there was only SLIGHTLY decreased. He would give it six more weeks, and if there was no significant improvement, then we should start thinking about another exam under anesthesia to see if there was any more leakage from the blood vessels. For the next six weeks, Craig and I fasted once a week and prayed for Joey to not need another surgey.
JUNE: Dr. T said Joey's eye had improved! Yay! BUT..it was still possible that we'd have to do the exam under anesthesia again eventually, but as long as it was improving, we'd just watch and wait.
AUGUST: The exudate was continuing to decrease. Joey was checked to see if he needed glasses and we were told that his vision had improved slightly, and that he didn't need glasses for the vision he does have. From what I can tell, it seems that Joey has areas in his field of vision that he cant see. He struggles to focus on things. On other websites, I heard it described as "donut" vision. We think he has peripheral vision. We'll won't know what he can see until he's old enough to explain it to us.
NOVEMBER: Dr. T said that a lot of the exudate had decreased, but that he still had a big blob of cholesterol sitting on his retina. Which I thought might mean that as that blob breaks up, Joey's vision might improve greatly. On the other hand, that cholesterol sitting there could be toxic to his retina.
2004 was quite a year.
Tuesday, April 19, 2005
I Wonder Why They Don't
I gotta wonder why pediatricians don't warn parents about things like Coats' or Retinoblastoma. The first time a parent probably even thinks about a child's eye health is when they do an eye screening in kindergarten. Why don't pediatricians suggest that toddlers get a routine eye exam? It wouldn't cost any money, nor are there any legal issues in "suggesting" it. It could be a routine thing that at when a child is 24 months, or even 3 years old, their pediatrican could simply remind parents not to neglect eye exams. (And what the heck, remind them about dental visits, too.)
I realize that there are a lot of "rare" conditions out there, and doctors can't warn parents about EVERYTHING. But eye exams seem kinda basic. I mean, they seem kinda basic to me NOW. Before we knew about Joey having Coats', it never crossed my mind. Which, I guess, is exactly my point.
I realize that there are a lot of "rare" conditions out there, and doctors can't warn parents about EVERYTHING. But eye exams seem kinda basic. I mean, they seem kinda basic to me NOW. Before we knew about Joey having Coats', it never crossed my mind. Which, I guess, is exactly my point.
Thursday, April 14, 2005
Diagnosis
(To read the story from the beginning, see the first blog and then read up)
Thursday morning. We got up, and got ready to go. We had no idea what to expect. Would Joey have to stay in the hospital? I packed some jammies and his "doggie" to comfort him, as well as a change of clothes for us...just in case.
We arrived at Children's Hospital and filled out forms, gave insurance info, etc. In the waiting room, to ease my nervousness, I started reading the book of Psalms in my bible, trying to find one that comforted me. I stumbled over Psalm 139, and as I read it, I began to put Joey's name into it. It read like this:
"For You formed Joey's inward parts. You covered him in my womb. I will praise You, for Joey is fearfully and wonderfully made. Marvelous are Your works, And that my soul knows very well. Joey's frame was not hidden from You when he was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw Joey's substance being yet unformed. And in your book, they were all written, the days fashioned for Joey, when as yet there were none of them. How precious also are your thoughts to Joey, O God. How great is the sum of them. If I should count them they would be more in number than the sand".
Even though that psalm didn't ask anything of God, it acknowledged that Joey was in His hands, which did make me feel better.
A nurse called Joey's name and and walked us into a room, where they gave him drops to dilate his eyes. After a while, the doctor and his partner Nancy, walked in. The doctor looked into Joey's eyes. He wrote some notes and sat to talk with us. "It just doesn't look like retinoblastoma." He said. He went on to explain that "retinoblastoma" is his specialty and that he can usually be 90% sure whether it is or it isn't, just by looking in dilated eyes. "However", he said, "It does warrent putting him under anesthesia for an exam to rule it out and to see what it is". His guess was Coats' Disease, for which he would send us to another specialist. They were so encouraging to us. I recall that they told us "Whatever this is, it is nothing that will take his life, and probably not even his eye, so please don't worry about that." They told us not to scare ourselves by going on the internet. "Too late", we told them.
The "surgery" was scheduled for the following Monday at 1:30. We were to arrive by 11:30. We got to L.A. a little early and so we just drove around Hollywood to kill time. My stomach was churning. Finally we pulled into the hospital. We checked in at the main office. Then checked in at "Surgery Admit" They weighed him, took his vitals and gave him some little purple hospital pajamas, and sent us tho the surgery waiting room. The room was full of kids in little purple pajamas, and there were lots of toys. We waited two hours before they finally called us up. I told Joey that they would give him some medicine to make him sleepy, and that when he woke up, we'd be right there. We were told that one of us could go in the OR with him and hold him as they put him under anesthesia. I put on the white overalls, head covering and shoe covering. They wheeled in a little bed and Joey immediately grabbed onto me and said "I dont want that". So I just held him and walked with him instead. I sat him on my lap and they placed a warm blanket on us. When the anesthesiologist came in, they put the mask on Joey. I kept talking to him, telling him I was right there with him. When he was out, they escorted me back to the waiting room.
About 45 minutes later, the doctor walked into the room. He said "Just as I thought...its not retinoblastoma.". He showed us the photos of the eye, and said it was Coats' Disease. He said referred us to another specialist who would be the doctor that would be seeing Joey from this point on.
We were called into the recovery room, where Joey was waking up. He had an IV in his hand and he was very groggy. The more he woke up, the more combative he got. He kept swiping at his IV. The nurse wanted to leave it in, in case he got nauseated, they could give him something through the IV to help him. Finally, they took the needle out and he seemed to be a little less agitated. The nurse said that we were ok to go home, but that we could hang out if we wanted to. Finally, we decided to go. We stopped at the Mcdonalds in the hospital (yes, they actually have one IN the hospital) and got some fries and diet cokes. We started the drive home (LA freeway at 5pm on a Monday....not fun). We arrived at my mom's house and layed him on the couch. All the lights were off, and the TV was on, and he kept crying that it was "too bright". After a while, he got up and started playing. He was good as new.
The next day, we called the new specialist, Dr. T, and made an appointment to begin treatment for Coats' Disease.
Thursday morning. We got up, and got ready to go. We had no idea what to expect. Would Joey have to stay in the hospital? I packed some jammies and his "doggie" to comfort him, as well as a change of clothes for us...just in case.
We arrived at Children's Hospital and filled out forms, gave insurance info, etc. In the waiting room, to ease my nervousness, I started reading the book of Psalms in my bible, trying to find one that comforted me. I stumbled over Psalm 139, and as I read it, I began to put Joey's name into it. It read like this:
"For You formed Joey's inward parts. You covered him in my womb. I will praise You, for Joey is fearfully and wonderfully made. Marvelous are Your works, And that my soul knows very well. Joey's frame was not hidden from You when he was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw Joey's substance being yet unformed. And in your book, they were all written, the days fashioned for Joey, when as yet there were none of them. How precious also are your thoughts to Joey, O God. How great is the sum of them. If I should count them they would be more in number than the sand".
Even though that psalm didn't ask anything of God, it acknowledged that Joey was in His hands, which did make me feel better.
A nurse called Joey's name and and walked us into a room, where they gave him drops to dilate his eyes. After a while, the doctor and his partner Nancy, walked in. The doctor looked into Joey's eyes. He wrote some notes and sat to talk with us. "It just doesn't look like retinoblastoma." He said. He went on to explain that "retinoblastoma" is his specialty and that he can usually be 90% sure whether it is or it isn't, just by looking in dilated eyes. "However", he said, "It does warrent putting him under anesthesia for an exam to rule it out and to see what it is". His guess was Coats' Disease, for which he would send us to another specialist. They were so encouraging to us. I recall that they told us "Whatever this is, it is nothing that will take his life, and probably not even his eye, so please don't worry about that." They told us not to scare ourselves by going on the internet. "Too late", we told them.
The "surgery" was scheduled for the following Monday at 1:30. We were to arrive by 11:30. We got to L.A. a little early and so we just drove around Hollywood to kill time. My stomach was churning. Finally we pulled into the hospital. We checked in at the main office. Then checked in at "Surgery Admit" They weighed him, took his vitals and gave him some little purple hospital pajamas, and sent us tho the surgery waiting room. The room was full of kids in little purple pajamas, and there were lots of toys. We waited two hours before they finally called us up. I told Joey that they would give him some medicine to make him sleepy, and that when he woke up, we'd be right there. We were told that one of us could go in the OR with him and hold him as they put him under anesthesia. I put on the white overalls, head covering and shoe covering. They wheeled in a little bed and Joey immediately grabbed onto me and said "I dont want that". So I just held him and walked with him instead. I sat him on my lap and they placed a warm blanket on us. When the anesthesiologist came in, they put the mask on Joey. I kept talking to him, telling him I was right there with him. When he was out, they escorted me back to the waiting room.
About 45 minutes later, the doctor walked into the room. He said "Just as I thought...its not retinoblastoma.". He showed us the photos of the eye, and said it was Coats' Disease. He said referred us to another specialist who would be the doctor that would be seeing Joey from this point on.
We were called into the recovery room, where Joey was waking up. He had an IV in his hand and he was very groggy. The more he woke up, the more combative he got. He kept swiping at his IV. The nurse wanted to leave it in, in case he got nauseated, they could give him something through the IV to help him. Finally, they took the needle out and he seemed to be a little less agitated. The nurse said that we were ok to go home, but that we could hang out if we wanted to. Finally, we decided to go. We stopped at the Mcdonalds in the hospital (yes, they actually have one IN the hospital) and got some fries and diet cokes. We started the drive home (LA freeway at 5pm on a Monday....not fun). We arrived at my mom's house and layed him on the couch. All the lights were off, and the TV was on, and he kept crying that it was "too bright". After a while, he got up and started playing. He was good as new.
The next day, we called the new specialist, Dr. T, and made an appointment to begin treatment for Coats' Disease.
Saturday, April 09, 2005
First Eye Exam
In Oct 2003, my husband, Craig, decided to take up digital photography and bought an awesome Nikon camera. He proceeded to photograph everything in his path, which, much of the time, was our 3-year-old, Joey.
As the photos began piling up in the office, Craig noticed something. Joey's left eye always seemed to reflect a white spot in the photos. You know, like the red eye photos you see once in awhile? Except it was a white/yellowish eye. Craig kept calling this to my attention, but I just figured it was the same thing as the red eye. Keep in mind that Craig is a very protective father - kind of a worry wart about his boy. And so I wrote this off as just another one of his worry wart moments. Until one day, Craig covered Joey's eyes, one at at a time, and asked him what he could see. Joey could see with his right eye. But with his left eye...he struggled. Well, that convinced me to take him to the eye doctor for an eye exam.
At the appointment with the optometrist, Joey obviously had trouble seeing with his left eye. He was given drops to dilate his eyes. With Joey's eyes dilated, the optometrist examined him further, but couldn't get a good look because Joey was kinda squirmy. Finally, the Dr. said that he could see a "mass" in there and wanted us to see their opthalmologist, as soon as possible. He made a phone call and set us up to see him in their other office that afternoon at 2pm .
With an hour to wait before I had to leave for the 2pm appointment, I decided to call the ladies from church to get them praying. I called Cathy and told her what was happening. She said she'd get the prayer chain going and prayed with me on the line. I told her I had not called Craig yet. I didn't want to call him until I knew all the facts. He works on a mountain, and the last thing I wanted was for him to drive that road upset and nervous.
At the ophthalmologist's office, we once again went through the eye exam. When he was done, he closed the door, sat down and with a very serious look on his face, said that he wanted to send Joey to a specialist. He said if he HAD to take a guess on what it was, he would guess Retinoblastoma. He said he would make some calls and call me tonight and let me know where to go. He gave me his cell phone number and told me to call if I had any questions.
A doctor giving his cell phone number? I began to really be afraid.
I started the drive home. I called my sister...she wasn't home. My cell phone rang. It was Craig. I didn't want to have this conversation with him on the phone, but I couldn't pretend that nothing was wrong. So I told him everything.
When Craig got home, he started searching the internet for information on Retinoblastoma. I heard him walk out of the office and into our bedroom. When I walked in, he was on his face sobbing. In the 9 years that I've known Craig, this is the only time I'm seen him cry. My heart was broken for him. For us. Yet through this, I had a strange sense that God's eyes were right on us at this moment. That this whole thing did not take God by surprise. That He knew we would be traveling this road, and He was right there with us. I remembered back a few months when we had taken a trip to New York and had a stopover in Chicago. My high school friend, Jan, lived in Chicago now, and we had planned to meet there. When I saw her, she had talked about not fearing anything, about trusting God with everything. Even when bad things happened. Those words had rang in my ears since our meeting. I hadn't known why those words had kept coming back to me during these past few months. I now knew that God had used her to prepare me for this.
Later that night, we got a call from the ophthalmologist. He had scheduled us to see a specialist at the Children's Hospital in Los Angeles. We looked him up on the internet and found he was quite well-known in this specialty.
I had decided not to call my family until I knew for sure what was going on...until after we spoke with the specialist. But Craig said I should call them so they could be praying. I called my mom and told her. She said she would be praying. I called my sister and told her. Her reaction is one that, when I run it through my head, it always makes me cry. Nobody loves their nephews more than my sister. She and her husband would be praying.
Later that night, our friends Lou and Terri came over and we laid hands on Joey and prayed over his little sleeping body.
Tomorrow we'd be driving a couple hours into Los Angeles to see what the doctor had to say.
As the photos began piling up in the office, Craig noticed something. Joey's left eye always seemed to reflect a white spot in the photos. You know, like the red eye photos you see once in awhile? Except it was a white/yellowish eye. Craig kept calling this to my attention, but I just figured it was the same thing as the red eye. Keep in mind that Craig is a very protective father - kind of a worry wart about his boy. And so I wrote this off as just another one of his worry wart moments. Until one day, Craig covered Joey's eyes, one at at a time, and asked him what he could see. Joey could see with his right eye. But with his left eye...he struggled. Well, that convinced me to take him to the eye doctor for an eye exam.
At the appointment with the optometrist, Joey obviously had trouble seeing with his left eye. He was given drops to dilate his eyes. With Joey's eyes dilated, the optometrist examined him further, but couldn't get a good look because Joey was kinda squirmy. Finally, the Dr. said that he could see a "mass" in there and wanted us to see their opthalmologist, as soon as possible. He made a phone call and set us up to see him in their other office that afternoon at 2pm .
With an hour to wait before I had to leave for the 2pm appointment, I decided to call the ladies from church to get them praying. I called Cathy and told her what was happening. She said she'd get the prayer chain going and prayed with me on the line. I told her I had not called Craig yet. I didn't want to call him until I knew all the facts. He works on a mountain, and the last thing I wanted was for him to drive that road upset and nervous.
At the ophthalmologist's office, we once again went through the eye exam. When he was done, he closed the door, sat down and with a very serious look on his face, said that he wanted to send Joey to a specialist. He said if he HAD to take a guess on what it was, he would guess Retinoblastoma. He said he would make some calls and call me tonight and let me know where to go. He gave me his cell phone number and told me to call if I had any questions.
A doctor giving his cell phone number? I began to really be afraid.
I started the drive home. I called my sister...she wasn't home. My cell phone rang. It was Craig. I didn't want to have this conversation with him on the phone, but I couldn't pretend that nothing was wrong. So I told him everything.
When Craig got home, he started searching the internet for information on Retinoblastoma. I heard him walk out of the office and into our bedroom. When I walked in, he was on his face sobbing. In the 9 years that I've known Craig, this is the only time I'm seen him cry. My heart was broken for him. For us. Yet through this, I had a strange sense that God's eyes were right on us at this moment. That this whole thing did not take God by surprise. That He knew we would be traveling this road, and He was right there with us. I remembered back a few months when we had taken a trip to New York and had a stopover in Chicago. My high school friend, Jan, lived in Chicago now, and we had planned to meet there. When I saw her, she had talked about not fearing anything, about trusting God with everything. Even when bad things happened. Those words had rang in my ears since our meeting. I hadn't known why those words had kept coming back to me during these past few months. I now knew that God had used her to prepare me for this.
Later that night, we got a call from the ophthalmologist. He had scheduled us to see a specialist at the Children's Hospital in Los Angeles. We looked him up on the internet and found he was quite well-known in this specialty.
I had decided not to call my family until I knew for sure what was going on...until after we spoke with the specialist. But Craig said I should call them so they could be praying. I called my mom and told her. She said she would be praying. I called my sister and told her. Her reaction is one that, when I run it through my head, it always makes me cry. Nobody loves their nephews more than my sister. She and her husband would be praying.
Later that night, our friends Lou and Terri came over and we laid hands on Joey and prayed over his little sleeping body.
Tomorrow we'd be driving a couple hours into Los Angeles to see what the doctor had to say.
Friday, April 01, 2005
Preface
In November of 2003, our son was diagnosed with Coats' disease. I'd never heard of Coats' disease until that day.
After a year, I've read all the internet has to offer...and let me tell you...its not much. This rare eye disease, as I have come to understand it, is when the blood vessels in the back of the eye leak the lipid portion of the blood into the eye. This "cholesterol" (exudate) then accumulates and can cause damage to the retina and possible detachment if the disease is not treated. There is no known cause of this disease. It usually occurs in males and usually in only one eye. At this point, I dont think the disease can be "cured", but treatment is an attempt to stop its progression. Treating it in its earliest stage is preferred. Keep in mind, I am not a doctor, I might not understand every detail perfectly. This blog isn't meant to be a medical help site or a means of helping you diagnose this disease. Rather, it's a way to chronicle our journey through this experience and possibly encourage others out there that might have just heard of Coats' disease for the very first time.
Come back later and read our story. I'll tell you about everything that we've experienced.
And it all started with the purchase of a camera.
After a year, I've read all the internet has to offer...and let me tell you...its not much. This rare eye disease, as I have come to understand it, is when the blood vessels in the back of the eye leak the lipid portion of the blood into the eye. This "cholesterol" (exudate) then accumulates and can cause damage to the retina and possible detachment if the disease is not treated. There is no known cause of this disease. It usually occurs in males and usually in only one eye. At this point, I dont think the disease can be "cured", but treatment is an attempt to stop its progression. Treating it in its earliest stage is preferred. Keep in mind, I am not a doctor, I might not understand every detail perfectly. This blog isn't meant to be a medical help site or a means of helping you diagnose this disease. Rather, it's a way to chronicle our journey through this experience and possibly encourage others out there that might have just heard of Coats' disease for the very first time.
Come back later and read our story. I'll tell you about everything that we've experienced.
And it all started with the purchase of a camera.
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