Saturday, November 12, 2005

Patching Woes - Again

Joey started Kindergarten in September. He goes from 8:30am to 3:00pm. He goes to bed at 8:30pm. He's supposed to patch 4 hours per day. Hmmm...

I try to patch him by 3:30, which means he needs to patch until 7:30pm. And it has become a whole new challenge, because he is tired at the end of the school day. Not to mention he has homework to do. And then on some days he has karate at 5:30. Most days it ends up being 3 hours patched at the most. I feel like this is constantly hanging over my head because I know he is not getting the patch time that he should be getting. Additionally, he has learned to wiggle his face "just so", so that his patch unsticks from the bottom and he can peek. This means I have to watch him every single minute that he is patched to make sure he's not peeking.

I do think that his brain is starting to use his Coats' eye, which is good. But because he is starting to use it, it bothers him a little. He's aware that it can't see as well. Sometimes I notice that when he's doing his homework, he sits with his elbow on the table and the palm of his hand covering his Coats' eye. His teacher told me she also noticed that he does that at the end of the day. It seems he does it more when he's tired. So its good his brain is using it, but it's a bummer that it bugs him sometimes.

We have our next appt with Dr. T at the end of the month. Dr. T, we have found out, is no longer with Children's Hospital. He is now in a private practice in another city.

One good thing is that since Joey is in school now, he knows all his letters and will be able to read the eye charts a little better (as opposed to the picture charts they have little kids look at). I hope that will give us a better idea of his vision and its progress.

Until next time...

Sunday, August 21, 2005

To have a child...is to forever have your heart go walking around outside your body

"Do all my friends and all the kids in the world be able to see with their two eyes?" my little boy innocently asked me.

About a week earlier he had asked me if I hadn't been able to see with one eye when I was a little girl.

Also recently, he asked "How long do I have to patch? Until I can see with this eye?"

He seems to be trying to figure out exactly what the situation is with his eyes. For all the above questions, I answered honestly, carefully, but I tried to be casual. "A lot of kids see with two eyes, but some kids are like you, with one eye that gives them trouble." He recently met my uncle, who is blind, so I reminded him that some people, like "Tio Gilbert" (Tio is "Uncle" in Spanish) cannot see at all. I also explained that some people are deaf, and some people cannot walk and may use a wheelchair, etc.

As for the question of how long he would have to patch, I said maybe til he was 7 years old or so, but that Dr. T would tell us when it was time to stop. I wonder if I should have been more honest with him about that. I mean, his vision might not improve all that much. But you never know. I guess we just gotta wait and see. But I do wonder what I should have said. I guess there will be other opportunities to talk with him as he wonders and asks.

Friday, July 01, 2005

Patching Unmotivation

I'm having a hard time patching Joey.

I'm the one having the hard time, not Joey.

He had his surgery in April, and I didn't patch him the week before or the week after. Then I started patching him again. He had to get used to it all over again. And I kinda feel like it's harder for me this time. I know I need to patch him. And I do patch him. But I find myself letting him take it off before the four hours is over. Or I find that on a busy day, I just neglect it completely. I just feel exhausted by it because I know how much he hates it. We'll be having a normal day and having a good time playing or running errands, and then it will occur to me..."oh yeah, I still have to patch him". Yes, I know it's a small thing compared to things that other people go through. I've just got to reach down inside myself and find that motivation because his little eye needs it. I cannot be so selfish. He needs it. Don't get me wrong...he does patch regularly...but like I said...I decrease the times on some days. And I used to give him Sundays off...now I give him Saturday AND Sundays off. I dont want to look back and regret that I was so neglectful about this. So I WILL find the motivation to be more faithful in this small task. Last time I had a hard time with patching, I asked some people to pray for me. Maybe that is what I need to do now. Ask God to help me be stronger and more faithful in this thing that He has entrusted me to take care of. Yes, that's what I'll do. I feel stronger already as I think about His strength. I feel His strength more when I am at the end my own. Thank you Lord for helping me take care of my little boy.

Friday, May 27, 2005

Coat's treatment - 2nd surgery

January 2005 - Joey's eye had not improved much at all. Dr. T advised us to consider another exam under anesthesia to see if there was any more leakage in the eye. I was ready to go for it. Craig wanted to think and pray about it. Dr. T was comfortable with us taking time to think about it. He told us "If I felt it was really urgent, I'd be pushing you more."

March: Still no change. We decided to go ahead with the exam under anesthesia and possible laser surgery. It was scheduled for April 22nd.

Once again, we lived in a bubble so that Joey would not get sick before the surgery and have to reschedule. However, two weeks before the surgery, he started sniffling. I called the hospital and told them, and they told me they would leave him on the surgery schedule, because sometimes they go ahead with it if it's "just" the sniffles. They explained that they would listen to his lungs and look at his throat, etc, and if everything looked OK, then he'd be ok to go ahead with it.

The day before the surgery, we drove to LA for a pre-op examination. After a 2-1/2 hour wait, we went in for the exam. They said his lungs were clear, as was his throat, ears, etc. They felt he was OK, but they would check him again the following day before the surgery.

On the day of the surgery, they checked him again and cleared him for the surgery.

Up in the surgical unit, Joey was given his "sleepy medicine". After a few minutes, he started getting giggly...and then he just started getting sleepy. The anesthesiology resident came over and introduced himself and explained the procedure to us. I mentioned to him that the last time Joey had had surgery, I was allowed to go in and hold him in the OR til he was asleep. He checked with the attending anesthesiogist, who then came over to speak with us. She said that the policy on that was currently "on hold" for various safety issues. I was Ok with that, because I could see that Joey was getting VERY sleepy, and I knew he probably wouldn't be aware of me being there or not. (Last time, he was a little more alert at this point). They rolled him on the gurney to the OR, and we walked along with him. Right before they took him through the double doors, we kissed him and said we'd see him later. He lifted his head and said "Kiss, Hug!". (that is what he says before anyone leaves the house). So we gave him a "kiss-hug" and they rolled him through the doors.

We went to the surgery waiting room and watched the animal channel. It was a really gross episode about kamodo dragons. They showed them stalking their prey and...well, it was gross. But definitely distracting.

After a couple of hours, they called us up to the recovery room. Joey was sleeping. Dr. T said that the surgery had gone well. Joey did have some more leakage behind the retina, which they lasered. He also has a bit of scar tissue in front of his retina. And he is beginning to develop a cataract. It is not affecting anything at this point, but if it progresses, they can go in and correct it. Dr. T also said that if and when he does the cataract surgery, he can try to do something about the scar tissue. This could be months-to-years away, though. He told us to come back in a couple of months for a recheck. He also gave us drops to give Joey for the next week.

When Joey started to wake up, he was screaming and thrashing around. He was trying to rip off his IV, and trying to rub his eye (it was not patched this time). It took four of us - one person holding each limb - to try to control him. This went on for about an hour...I kid you not. He would scream that he could not see. I told him that he had medicine in his eyes (his eyes were "gooey" from the drops, as well as dilated). I told him that in a little while, when the medicine wore off, he would be able to see. He screamed "I wanna see NOW!" Finally, he tired himself out and fell asleep with his head on my chest.

With a limp sleepy Joey, we stopped at the Hospital McDonald's on our way out. We had not eaten all day, except for coffee and a diet coke. I sat at a table and waited for Craig. There was a lady sitting next to me and she said "Long day, huh?". I hadn't realized that I looked just like I felt! I told her he had just had outpatient surgery. She said her daughter had also had laser surgery on both her eyes - she has "retinopathy of prematurity". We chatted for a little while. She had her little girl with her, as well as a boy in a wheelchair, and a set of twins.

I couldn't eat - which is rare. The McDonald's food just didn't look good - too greasy. The coffee and diet coke weren't doing very well in my stomach. We headed for the car and started our way home. Joey woke up a little, hugged his "doggie" and fell back asleep. I rode in the back seat with him to make sure he wouldn't rub his eye. The traffic was HORRIBLE. Soon, I was VERY car-sick with a terrible sinus headache and an upset stomach from not eating. It was a long drive home. When we got to my mom and dad's house, I just laid down and tried to feel better. I wanted to take care of Joey, but he ended up feeling good and eating and playing. He even came and gave me a stuffed Tweety toy to "hug" while I slept.

Once again, we find ourselves waiting to see what happens in that little eye. Our next appointment is in July. I'll keep you posted.

Thursday, May 05, 2005

Safety Glasses...er...I mean "Sports Goggles"

When we signed up Joey for soccer, Dr. T suggested we get protective eye-wear to protect his good eye. I went to Lenscrafters and all they had in the way of sports glasses were something called "Rec Specs". They were big bulky frames attached to a strap. If the strap was not tight enough, the glasses would move around his face. But when it was put tight enough, the frames left an imprint on his face. Because the frames were so large, it seemed as if they blocked his side vision. Of course, we wanted to protect his eyes, and we figured the sooner he got in the habit of wearing them, the better. We called them "Sports Goggles", so he'd feel like he was wearing athletic gear. At soccer practice, we would let him warm up without the glasses, but when the teams played together, he'd have to put them on. It soon it became a routine.

When I saw my little boy running around the field with these bulky tight glasses on, I had to wonder why they dont make more comfy sports glasses for kids. Like wrap-around types that adults wear, except smaller. Surely someone could offer kids something better than thick rubbery frames!?

Before I had gone to Lenscrafters, I had called around to all the sporting good stores asking if they had protective eye-wear for kids and they all said no. But one day, I was browsing around Sports Chalet, and just for kicks went to see if there was any eyewear in the baseball section. Well, I happened to find a whole rack of glasses in the raquetball section. They were made for adults, but when I tried them on Joey, some of them actually fit pretty good. They were lighter and more comfortable. And they were priced at $10-$25! (I paid $129 for the RecSpecs from Lenscrafters). I was so excited! We didnt buy any that day because he wasn't doing sports at the time, but now I know where to go when we need some!

Tuesday, May 03, 2005

Just a Case Study

When we go to our routine visits to the Children's Hospital, we are usually seen first by a doctor doing a residency/fellowship rotation, and then we are seen by Dr. T. On one particular visit, one of the doctors doing his rotation came into the examination room with a medical student. As we sat there, he talked to the med student about this "case". He told the student that this patient had Coats' disease. And that this patient's pupil "was blown". He stood there and talked to the med student as if we, the parents of this case study, were not sitting there listening. He talked as if it didn't even cross his mind that maybe our entire lives revolved around this interesting case study.

When Dr. T came in, Craig asked him to explain a "blown pupil" . Dr. T looked a little confused. We then told him about the other doctor's comments. He said that this doctor should not have used that terminology because it was not accurate. I guess what the other doctor was referring to was the fact that Joey's pupil had been dilated for six months. Dr. T told us that it might or might not go back to normal. When they had done the laser surgery, much of the damage was close to the nerves of the pupil, so it was difficult to determine exactly when the pupil would work the same again. He said it wouldn't hurt his eyes, but that it might make him sensitive to light. All we could do was wait and see.

I really hope that this doctor was informed about the fact that we were offended by how insensitive he was. I think that ESPECIALLY at a Children's Hospital, a doctor needs to be more sensitive to people's feelings. That's not just a manila folder with an interesting case study. That's information about my precious little boy.

That evening, Joey's pupil suddenly started working again. Weird timing, huh?

Saturday, April 23, 2005

Patching Woes

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.

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.

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.

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.

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.

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.