Coats' Disease

A Month After Surgery

2012-01-06T00:30:00.000-08:00

Its been over a month since Joey's surgery. We've had 3 appointments to make sure that everything was healing properly...and yes, everything is healing properly. He is down to only the Prednisone drops 2x a day. He's back to doing all his normal activities, although he has to wear protective glasses when he does sports...which he should've been doing all along anyway. I remember I had posted a long time ago that we had bought sports glasses to protect his eyes. Now that he has had so much work done to his eye and it's still in the healing stage, we're more serious about it. Plus the fact that he has to protect his good eye is very important.

We took him in for a recheck a week after the surgery, and then another recheck a week after that. His vision has not been great, it seems he is seeing less than he did before. The first visit, Joey was really discouraged, and even was crying a bit. Craig was encouraging him, telling him not to give up hope...that his eye was still healing. Dr. T has said that so far the eye is healing and everything is looking good. He also said that because of all the Coats activity in his eye, he had done a lot of laser therapy, so there was still a lot of inflammation back there. So now we just had to wait for the fluid to drain, and also for the inflammation to decrease as his eye heals. These two things are factors in how much his vision would improve. Joey always seems to be encouraged after talking with Dr. T.

It has occurred to me, during this "waiting" period, that the first priority is to control the Coats' Disease...to get that leakage under control and get the fluid in his eye to drain, or get absorbed. The second priority is to maximize his vision. I'd been under the impression that any treatment would improve his vision..but the treatment is to stop the Coats. We've been seeing Dr. T every few months for years. We'd go in to see him, he'd check Joey's eye, and everything would look good. That's how I expected things would always be. So to have the Coats begin to be active again...it makes me angry.

We've encouraged Joey and been positive with him. We're praying for him always. I told him just tonight..."you never know what God is going to do, and you never know how He can use the hard things that we go through for something good".

I 'll keep you posted on his progress. In the meantime, keep my little guy in your prayers. And us.

A Post by Joey

2011-11-23T19:40:00.001-08:00

I asked Joey to tell me about his surgery.
He talked and I typed...

"The nurse messed up on my IV before the surgery.

Before the surgery I walked in the hospital scared and shaky, because I didn't remember the last surgery, since I was 3 years old. I was shaking like crazy. I had to go in and put on stupid clothes and then I had to go do my weight and height. And the nurse said I'm almost as tall as her.

Then the people came in. One of the nurses said she wanted to give me the IV, but I didn't want it til I was asleep, but they said there'd be no gas and that'd be better cuz I was a little too old for the gas. So they gave me the IV, but the nurse messed up on the IV on my hand because she pulled it out so I had to get 2 IVs.

Also when I walked in the hospital, I got a bracelet that I'm wearing right now.

After the IV, the eye doctor walked in and talked to us. He marked the eye and after I was asleep, they checked my eyes. I'm not sure if I remember going into the place and getting rolled out. But I remember waking up someplace and some one saying "Joey, wake up". I think it was the nurse, but I didn't open my eyes, because it was too bright. I tried to open my eyes but it was too hard. So I think I remember being rolled back in and I was sleeping. My mom and daddy said "you wanna go home now?" But I said "no I want to sleep for a little bit". I remember waking up and going pee. It was very yellow from the dye. I was peeing for a long time. I went back to the bed and slept for another hour. I slept for a long time. We left the hospital with a patch on my eye.

We stopped at a hotel and it was hard to see because it was so bright. When I walked in the hotel, the people looked at me because I had a big patch on my eye. I couldn't open my eye and it really bugged me a lot. I didn't like the experience of having surgery one day. I had to take a physical and they took my blood. and they wanted to give me a bunch of shots. The blood didn't hurt. I was crying at the hospital because I was very scared.

I fell asleep very good that night, I woke up and was very hungry. My pee was still pretty yellow in the middle of the night. I slept for 10 hours so I was awake in the middle of the night for a little while. Mama said, "go back to sleep", but it was hard, kind of. Daddy backed me up because he said I was sleeping for 10 hors. So I fell back to sleep and woke up the next morning. I hated it because it was very bright outside, and when we all walked to get breakfast it was very bright.

We went to the eye doctor and they took off the patch. I could see more shapes I think. I could see letters better. But now they put eye drops in my eyes so its hard to see with all that crap in my eye. So I have to get all those eye drops in my eyes for a week. I have to wear a little metal plastic-y patch that has to be taped every night so I dont poke my eye while I'm sleeping. I cannot do anything for a week so nothing gets loose in my eye. I have stitches in my eye and its annoying. In a week I go to the eye doctor and they will check out my eye again. They are going to see if it is good or bad still. They gave me a new lens and sealed up the retina. And they put a new thing in my eye that will prevent me from ever having the surgery again, most likely. I also got an iPhone for going through all that trouble."

November 2011 Update - Surgery

2011-11-22T14:36:00.001-08:00

Last post on this blog was over a year ago, and in reviewing the last couple of posts, I see that Dr. T has been talking to us about Joey's cataract since at least June of 2009! So here we are, in November of 2011, and today is the day after Joey's surgery.

Over the last year, the cataract had been getting worse and worse, and finally Dr. T said we needed to get that taken care of because it was getting much harder for him to look IN to see the condition of Joey' eye. So we set a date (which happened to also be Hubby's bday!), and began to prepare for the surgery.

Joey was very nervous as he anticipated the whole thing, as were we. Along with the cataract surgery, Dr. T would also be examining both eyes, and if necessary, would seal closed any leakage with laser therapy. A routine, outpatient surgery. But still, when it's your baby...

A few weeks before the surgery, Joey needed to go to the pediatrician for a physical to clear him for surgery. He also needed to go to an ophthalmologist to get a"lens calculation" for ordering the size of the lens that would be implanted to replace the lens with the cataract. We also decided to get a hotel room close to the hospital, since we would need to see Dr. T for a recheck on the morning after the surgery, and didn't want to make the long drive home after the surgery, nor the long drive back the next morning. (Dr. T's office and the hospital are both located in the Pasadena area, which a 2-hour drive from our home.)

We were scheduled for 10:30am, which meant we needed to arrive at the hospital between 8am and 8:30am. We left home at 6am. Joey could not eat or drink anything. I thought I had dealt with my anxiety, and felt relatively calm. However, I puked all the way there, and later that evening, I'd find that I had forgotten to pack a few things that I needed.

We arrived right on time. To "Admitting" to get registered, up to 2nd floor to "Same Day Surgery". The person at the desk told us that Dr. T's second surgery had cancelled due to sickness, so we would probably go in a little early.

We went into the room, which would be where we waited during surgery, and where they would bring him after he was done. He changed into his gown and laid down to wait. The first nurse came in and asked him if he wanted the IV done at that time, or if he preferred to have it done after he was asleep. Of course, he wanted to wait! (Duh!) However, when the anesthesiologist came in, she said that for a child his age, it was "safer" to have the IV done, and to bypass the gas. We did what she suggested, although this threw Joey into a really nervous mode! He was shaking and crying, and so I held his head while they started the IV. The first nurse stuck it in, but then accidentally pulled it out. Argh! The second nurse did it pretty easily - he hardly felt it that time.

Dr. T came in and said hello, told Joey his nervousness was pretty normal, and then he "signed" his initials with a marker over Joey's left eye. (various hospital personnel had also confirmed and reconfirmed that it would be the left eye). Once the IV was done, they wheeled him out to take him to the OR. It was 10:15am. We walked with him, but couldn't go past the doors into the O.R. We hugged him, kissed him, prayed with him..and they wheeled him in. As I saw him going in, I saw his little face scrunch up crying, and I could see he was shaking. Those are the visuals that I never forget...that break my heart each time I see them in my mind's eye. I comforted myself with the thought that I knew they were giving him something to relax him, so I knew he'd feel better in a few minutes.

We expected the surgery to last about 1-1/2 to 2 hours, but it went long, almost 3 hours. Finally, we heard Dr. T's voice outside our room. He walked in and said he was done. That was around 1pm. He said everything went well. He gave me a card that had the size and details about the lens implant that they'd used. He also told us that once they got in there, he found that there was quite "a lot of Coats' activity" going on. So they sealed the leakage, gave him a steroid injection (which he had done during the last surgery. He had explained to us back then that it was for a quicker absorption of the exudate from the leakage). They also gave him an injection of a certain drug that had been found to be very helpful in preventing future leakage (not a new drug, but a new use). They were able to peel away some scar tissue that he had in there, which I was glad to hear, because I always wondered how much of that scar tissue was impairing his vision. Dr. T said it was more extensive of a surgery than he was anticipating, and that's why it took longer than expected. But..it all went well, and everything that had been done, could only help Joey. He told us that they'd be bringing Joey back in a bit, and then he left.

So we waited, and it seemed like a long time before they brought him back. But finally, we saw them wheeling him back. He was sleeping, but I saw him stirring when they were rolling him in. He said he was sleepy, and just kinda dozed comfortably. The nurses said they'd just watch him a while, so they hooked him to the monitor and we just sat with him. He woke up enough to take a few sips of juice, and go to the bathroom...but he was sleeeeeepy. After about an hour (2:30pm), the nurse said he was doing well, and said he could go home anytime. She said Dr. T wanted him to have some Tylenol before he left, so she gave him some. She gave us our discharge instructions: Keep head elevated 30 degrees, don't get the dressing wet, give Tylenol for pain, call if there's any swelling, extreme pain, or vomiting. Craig went to get the car, while I dressed Joey and got him ready to go.

After we left the hospital, we stopped at Von's first, to grab something for our dinner, as well as some crackers, apple sauce, and other things like that for Joey to eat in case he was feeling queasy. We checked into the hotel, which was about 5 minutes away from the hospital. Joey dozed off and on most the day..complaining about the patch annoying him, and the fact that he couldn't lay on his side, since he needed to keep his head elevated. We figured if he was complaining, he was doing pretty well. :)

At about 6pm, he woke up, ate, watched TV, and made calls to everyone he could think of! After a couple hours, he was sleepy again and fell asleep for the night. This morning, he woke up early and starving! And he was very anxious to get to Dr. T's office to get the patch removed.

Joey with his goggles!

At his appointment, the nurse removed his patch and gave him a vision test. Joey got very nervous and shaky again! He felt like he had some "crusties" on his eye, and he kept focusing on that. Later, when Dr. T examined him, we found out that it was actually the stitches in his eye that he was feeling. Dr. T said everything looked good. He gave us 4 different drops to put in his eye at 4 different times of the day. And said he wanted to see him back in a week. No sports activity, nothing strenuous, and he gave him some goggles to wear, since he'd be dilated for a while, and to protect from the wind if he goes outside.

Whew! So we made it through these two days that we'd been dreading for months! Everything went well, looks good, and time will tell how much Joey's vision will improve with the cataract fix and the scar tissue removal. He's really excited with the prospect of any improvement in his vision. Looks like he can see better already without the cataract, but he's so dilated at this time that its hard for him to see well right now.

We go back to see Dr. T in a week, so hopefully we'll get a better idea of how much his vision has improved then.

We had all been so anxious for this surgery. Even as I write this, I can only mostly tell you the the facts about what happened, as opposed to all we've been feeling through it. But we made it - and I have to say that God carried us through, along with everyone's prayers. Soooo many people praying for us -I'm so thankful. So with all that said, I keep thinking this: what doesn't kill us makes us stronger.

September 2010 Eye Exam

2010-09-23T20:08:00.000-07:00

The first eye exam of 2010! We were way overdue for an appointment!

But we were glad to find out that Joey's vision has not changed since his last appointment. Ideally, we'd love to see that it has gotten better, but we're just glad that it has not gotten worse. The eye looks dry and healthy inside, which is great. When Dr. T started the eye exam, he turned on the wall screen, and with his back to the wall, asked Joey what letter was on the screen. Joey looked and looked, and looked some more, and then finally he said, "Is that even a letter??? It looks like a CAKE!" And it WAS a cake!! Dr. T thought he'd put the letter chart up, but had, instead set up the picture eye chart! (see children's chart on the left!)

Dr. also told us that the cataract is growing. He said it was getting harder for him to look into the eye, which leads me to believe that it must also be hindering Joey's vision as well. Dr. T told us that it wasn't "urgent", so maybe during next summer vacation, we can plan on that procedure. (Wouldn't it be awesome if God healed that cataract! We will pray and see what happens! )

Surprisingly, Joey didn't seem too concerned about it. He said he was glad that he might be able to see a little better. He's an old pro at surgeries...one Exam under Anesthesia, 2 laser eye surgeries, and one appendectomy! Should I mention that he also decided to come a month early in an emergency C-section? Yes, this boy has filled our lives with a lot of drama from day one. :)

Here's a pic of Joey before his exam:

And here is is after his eyes were dilated...can you see his big pupils?

"I'm ok with it", he said...

2009-11-17T16:10:00.000-08:00

Just got back from Joey's appointment with Dr. T. We were kinda nervous about this one, since he hasn't patched too much in the last few months. Homework seems to consume the evening and before we know it, we've arrived at the end of the night with no time left to patch. It seems to be the easiest thing to knock off the "to do" list.

So we were pleasantly surprised to find out that his vision had actually improved in his Coats' eye! After the exam, the nurse puts the drops in his eyes to dilate them - this is actually the part he hates most! Then...the wait for the drops to take effect. The nurse dims the lights in the room, and puts Tom & Jerry on the little TV for him to watch. Here's a photo of him doing just that...

But before he laid down, while it was just the two of us in the room, he walked over and sat down and said,

"I'm ok with having Coats' Disease".

I said, "You are?"

He said, "Yeah"

He continued, "I could have a pencil that doesn't write very well, but I could still use it. My motorcyle doesnt work very well, but I can still ride it...(pause)...I can't see very well with this eye, but I can still see".

I was amazed at the wisdom his little mind had worked out.

I started to say, "You're right. You, know, nothing in this world..."

He finished for me, "...is perfect".

We then talked about a place where we would one day be perfect.

...Then he laid down on the cot to watch Tom and Jerry and waited for Dr. T to come in.

2009 Coat's Disease Update

2009-06-18T09:44:00.000-07:00

Haven't updated in a while because things have been uneventful. Which is a good thing. Joey had his last eye exam a couple of weeks ago and his Coats' eye remains stable. We'd like his eyesight to improve, but if it doesn't improve, staying the same is the next best thing.

The Dr's office had some "patching charts" available on which Joey can stick his patch each day and eventually the chart starts to look like a cool design. I bought three at $3/each. Really, they should have just handed them out, since they have pharmaceutical ads on them - seemed more like a promotional freebie-type item to me. But what the heck, I bought some. Here are some photos of the charts:

I know I've mentioned before that he really hates getting the eye drops that dilate his pupils. Oh, how he hates that!! It used to be that his eyes stayed dilated for a couple of days, but now it seems they're back to normal by the time he wakes up next morning. On the way home, he always wants to wear those disposable sunglasses that they office gives out to their patients. He prefers those, even though we've bought him a million "cool" sunglasses!

As for the results of his exam, his retina looks dry (which is good because it means no leakage), his vision remains the same, and the cataract has not grown. These are all good things. Glad its summer because patching will be easier (well, if not easier, at least we'll have more time to do it!).

When he was younger, he didn't care if others saw him while he patched. He'd play with other kids, we'd run errands, etc. Now he cares. Not too long ago I suggested he patch and go play with the neighbor kids (you know, multi-task!). He looked at me and said, "...in front of my FRIENDS?" I guess not.

Well, that's it for now - as I said, it's pretty status quo on the Coats Disease front. Just wanted to keep in touch with everyone who might be keeping up on us either because you know us, or because you are on a similar journey.

Til next time!

White Eye Photo

2009-01-02T21:53:00.000-08:00

Joey was diagnosed in 2003, and as I've shared in one of the first posts on this blog, it was a photo that clued us into the fact that something was not right. I'm surprised I haven't posted a photo of this sooner. As I was browsing through photos tonight, I came across this one and thought it was a good idea to post it.

This is what Coat's Disease looks like:
(Click on the photo to enlarge)

Karaoke Patching

2008-09-04T23:05:00.000-07:00

School is back on - and I thought I'd take the opportunity to re-establish a routine - that is, patching at a specific time every day. This seems to have worked well, since we are establishing a new routine for everything else right now, too. Soccer season is underway, homework's gotta get done, etc. Funny thing is, we accidentally stumbled upon a saving grace...The Karaoke Machine!

Joey was given this nifty little machine for Christmas. After a couple of months, I put it in the garage and figured we could pull it out whenever we wanted to play with it. This week, as Joey walked past it on his way in the house, he asked if we could bring it in. I said, "Hey yeah, we could do THAT for our patch activity!" (We do various things - games/crafts - while he's patched to make the time go by faster and because I gotta keep my eye on him the whole time to make sure he doesn't "cheat"!)

So...we karaoke'd! And let me tell you...You have no idea how fast patch-time flies when you are Karaoking!! We were singing away..."Girls just wanna have fu-un..."...and before we knew it, patch time was done!

Not sure how long the novelty will last. But for now - we are singing fools!

March Visit to Dr. T

2008-03-05T05:54:00.000-08:00

Joey had his routine eye check-up with Dr. T yesterday. Everything looks good! At his last appointment, his left eye was at 150/20. Yesterday, it was 125/20! That's a slight improvement! Everything inside his eye looks stable, and his cataract has not worsened. All good news!

During the exam, I had the pleasure of hearing my 7 year old son have a conversation with his doctor about Vincent Van Gogh! There was a small calendar on the desk with a picture, so Joey pointed to it and said "That's a famous artist."

Dr. T said, "Yes, it is! Do you recognize him?"

Joey said, "He cut off his ear!".

Dr. T said, "That's right! It's Vincent Van Gogh! Have you learned about him?"

Joey said "Yeah, we learned about him in school.".

Dr. T said, "He was also a poet. Did you know that? But he only became famous after his death. That happens a lot. A lot of artists only get famous after their death. ."

I enjoyed this little exchange, and Dr. T seemed to enjoy it, too! They also discussed motorcycle riding (Joey's favorite rider is Travis Pastrana, Dr. T's favorite rider is Ricky Carmichael). Joey also wanted to let Dr. T know that he had gotten an A+ in Language at school. (Later, he proudly told Daddy that Dr. T said he "loves it when his patients get A's"!) He even asked Dr. T how long he had been an eye doctor (10 years)! He is one of the best (if not the best) pediatric retinologists - I am so glad God led us to him!

Later that evening, Joey had Karate class. I gave him the option of skipping it cuz his eyes were still dilated, and the lights at the dojo are bright. But he wanted to go. (They've ordered his sparring gear and he wanted to see if it had come in. They ordered a week ago, and told us it would take 6-10 business days to arrive. It's been 7 days, and Joey - not knowing the concept of "business days" - thought it would be there!) During his class, I overheard him telling his Sensei that his eyes were dilated. Sensei kinda laughed and said, "Do you know what dilated means? It's when the black thing in your eye gets bigger or smaller to let light in or not". And I thought...Not only does he know what dilated means, but he knows that the black thing is called a pupil! From where I was sitting, I couldn't hear the whole thing, so I couldn't tell if Joey was telling him that the lights were too bright, or if he was just chatting about his day . But he didn't seem to be having a hard time, so I didn't interfere.

So Joey has had a great week! He got his midterm report and his grades have all improved; he's happily waiting to start sparring at Karate; and his eye exam went very well! And today his school is having its "Grandparents Day" (his class will be singing "Take Me Home, Country Road")!

Next eye exam is scheduled for July.
Until then...

Finding Nemo Makes Me Cry

2008-01-15T10:08:00.001-08:00

I kinda put this out of my mind for a while, until I was recently reading another Mom's blog about how she had read Finding Nemo to her son every night, complete with different voices!

I'm sure you've seen it by now, so I wont bother to warn you that this is a spoiler. Nemo's Dad is overprotective of him, which really annoys Nemo. The whole adventure of the story is that Nemo gets lost, and his Dad spends the duration of the movie trying to find him. When they are finally reunited, Nemo gets hurt, and is laying there, lifeless. Dad picks up Nemo's little body, looks at him, and he gets a flash of a memory - looking at Nemo's egg before he was born. I know that I could never explain how my heart feels when I see that scene. Here's why. When Joey was undergoing the first exam under anesthesia to find out what the "mass" in his eye was, I sat in the waiting room. And I remember having memory flashes; and one I distinctly remember, was looking at the pregnancy test that said "positive", that I was expecting Joey. Yeah, it's just a fish cartoon, but that movie will always have such an emotional tie in my heart.

Anna Nicole's Baby Wearing a Patch on Her Eye

2008-01-14T19:28:00.000-08:00

While she does NOT have Coats' Disease, Dannielyn is wearing a patch as treatment for strabismus. Strabismus, or crossed eyes, is common among children, and about 4% of children in the US have the condition. I had Joey watch it just so he could see that he's not the only kid who has to patch! I wish Larry Birkhead the best and hope the patching works so that Dannielyn does not need to have surgery to have this corrected.

2008 Update

2008-01-05T11:17:00.000-08:00

Long time since last post. Joey saw Dr. T for his routine check-up in December.

a. Retina looks dry (that's good)
b. Vision is the same (As long as its not getting worse, I'll take it!)
c. his Cataract is still the same (see "b" note above!)

Dr. T wants to see us in 3 months, cuz he wants to keep an eye on the cataract. Call me a nut case, but I am praying that the cataract decreases and goes away. We gotta resolve to patch more regularly, too. Its hard, cuz he gets out of school at 3pm, then two days a week he has Karate in the evenings, and he has homework (which, depending on mood, can take anywhere from 20 minutes to 3 hours - he is a strong-willed little boy!!). So our patching has become only one hour, on 2-3 days a week (on a good week). So, gotta figure out how to manage this a little better, to accomplish more patching time.

He has questions from time to time, like if it would help his vision to wear glasses. I had to explain to him why this is "different" than needing glasses. He seemed to understand. He also wonders what its like to see "with two eyes". Now that he's a little older (7-1/2 yrs!), things are a little easier to explain to him. He tells people he's had "two laser surgeries" and that he "really hated the sleepy medicine!". Talking about it brings some freedom and relief - cuz when he was younger and going through all this, we didn't give him all the details for fear of scaring him too much.

At the last appointment with Dr. T, I told Joey, "You've been coming to see Dr. T for over half your life, Joey!" He was pretty amazed, and Dr. T said "Wow! So I really deserved those pictures you brought me!" (Joey had given him his karate pictures at that visit).

Until next time...

Orange Circles Explained

2006-08-30T15:57:00.000-07:00

We just got back from our appointment. My main worry was that his retina was detached, but Dr. T said it was intact. He said the flashes are caused by the vitreous fluid (the "jelly" in the eyeball) separating from the retina. He said that it is something that happens as we age; the jelly becomes thinner, and in Joey's case, since he has so much going on with his eye, that his eye "ages" faster than a normal eye. So as the jelly becomes thinner, it moves around in the eye, causing these flashes of light. Once I knew what it was - Vitreous Detachment - I googled it and was amazed to find that Joey had described it exactly as the article says. Actually, he said he saw orange flashes and what looks like a "beetle" walking across the side of his eye, which I figured meant "floaters". Dr. T said that this should go away over time, but as always, to monitor him, which we do. We always see Dr. T every 3-4 months anyway. I will keep on praying for that little eye to be healed.

As for my anxiety, God must have been with me, because I was ok on the drive. I was ready to whip out my "sword" (my memorized scriptures) and fight it though. My friend, Barbara, gave me another scripture to pray - Be anxious for nothing, but in prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace which passes all understanding will guard your heart and mind through Christ Jesus. Thats how I feel, like I made my requests known to Him, and He guarded my mind and heart.

Meanwhile, Joey missed the first two days of first grade, and when he goes in tomorrow, his eyes will probably still be a little dilated. I'll pack his sunglasses in his backpack. Although I've learned that you can lead a horse to his sunglasses, but you cant make him wear them...

Orange Circles

2006-08-29T16:03:00.000-07:00

Joey was supposed to start 1st grade today, but yesterday he started puking and so, he is home today.

Last night as he was going to bed, he mentioned that he saw "orange circles" when he blinked. I asked him which eye, and he pointed to his left eye, which is his "Coats" eye. I immediately began to worry and then finally pulled out Dr. T's card, which had his cell phone number on it. I called (it was about 9pm) and apologized for calling him at home AND for calling at that hour. I explained to him what Joey had told me and asked if it was something I should be concerned about. He said he would have to take a look at him and see what was going on. He wouldn't be in the office today, as he would be in surgery all day. But told me that I could go to the office first thing Thursday. I called the office this morning, and they told me to come at around 8 or 8:15. So I'm taking him in. It's about an hour and half drive from here, so I am not looking forward to it, but I think this is important enough not to wait til next week when Dr. T will be in the nearer office. I will also admit that I have already been on the internet scaring myself about this.

I will also say this...since Joey was diagnosed a couple of years ago, I've struggled with anxiety while driving. It's gotten better since I have figured out that it is anxiety, but I still fight it. Today, I prayed to God to be with me and give me strength. I told Him that I just felt too weak to fight the battle and that He would just have be with me and help me and give me the energy to fight it. Let me backtrack a little - a couple of weeks ago, I started to memorize Psalm 143, and when I feel anxious, I begin to pray it and it helps me a lot. I am memorizing it slowly, adding a verse at a time. So today, I picked up the bible and looked for this psalm to add to what I have memorized so far, when my eye was just drawn to another psalm on the page, and in particular, this verse:

Blessed be the Lord, my rock.
Who trains my hands for war and my fingers for battle.
He is my lovingkindness and my fortress;
my strong tower and my deliverer;
my shield and the One who I take refuge in.

I wont say that I miraculously felt peace, but I believe that He put a weapon in my hand to use when the need arises. Since the bible says that the Word of God is a sword, then I will wave my sword (recite the Word) in my battle against the anxiety.

June 2006 Update

2006-07-03T16:35:00.000-07:00

Dr. T is now at an office in a city MUCH closer to where we live, so the drive is not so bad. (He's in the the old office on some days, and in the new office on other days). Joey had his routine eye exam this month. He's doing pretty good. Dr. T says the eye looks good, no leakage. He still has a cataract that does not seem to be worsening yet. We are praying that it will stay as is, or go away altogether.

While I was in the waiting room, I was "eavesdropping" on some ladies talking. They were comparing notes about what their babies had. One mom said that her baby had had three laser surgeries and two retinal reattachments. She said the baby's eyesight was poor, but that the sight she did have was only due to Dr. T. She said she was SO GLAD that she had found him. That was nice to hear.

The usual visit goes like this: The nurse checks his vision with an eye chart (kind of like a slide show on the wall). His right eye can see the chart - his left eye gets the "how many fingers am I holding up" test. After that, she puts drops in his eyes (which he HATES more than anything!). We wait a while for his eyes to dilate, and then Dr. T comes in. He turns out the light, and with a BRIGHT light on a headgear-type thing, he shines the light into Joey's eyes and hold a magnifying-lens-type thing up to Joey's eye so he can look inside. Like I said, the light is VERY BRIGHT and Joey has ALWAYS fought during this exercise. As a matter of fact, up to this point, Joey has sat on my lap during his exams. This time, he sat on the examination chair all by himself and did really well. Didn't move or squirm at all. I was quite impressed. Must be the maturity that turning six years old has brought to him. I asked Dr. T if he thought Joey's vision was improving any. He said it was definitely improving and to keep patching. Our next appointment will be in October.

Last time we saw Dr. T, Joey wanted to show him a picture of him on his new motorcycle. (He's got a little green kawasaki). Dr. T made a big deal about it, telling Joey that was really cool. When we left, Joey whispered to me that he wanted Dr. T to keep the photo. I told Dr. T, and he said "Oh boy, I was hoping I could keep it!" I thought that was pretty nice.

It's summer vacation, so patching is a little easier right now. Actually, I don't mean "easy". I guess I mean that patching is "less horrific" - ha ha! I can patch him early in the day before he's too tired. I made a little schedule for him for each day and right beside "patch time", I wrote "activity time with Mom", to make it sound a little more interesting. So far, its ok. We'll see how the summer progresses.

A couple of days after the appointment, Joey asked me "What did Dr. T say I had in my eye that had to be removed?" I was caught off guard cuz I didnt realize Joey was paying such close attention to what was being said at his appointments. I told him it was a "cataract", and I found it really hard to explain what that was. I did my best and told him it might need to be fixed, but that we'd have to wait and see. He seemed satisfied with that - and for that I am thankful. I figured he'd have more questions about it all as he got older. Six years old isn't quite "older", but I guess he's paying more attention and understanding a lot more now.

Thats all for now...

Chatting In the Car One Day

2006-05-15T17:33:00.000-07:00

Joey: Could I see with two eyes when I was a baby?

Me: I don't know for sure, but I don't think so.

Joey: Did you know that some people can wear glasses and they see better?

Me: Yeah. I wear contacts and they help me see better, but glasses and contacts dont work for everyone.

Joey: Well, did you know Dylan wears glasses? (Dylan is his classmate)

Me: Yes I did. But you and Dylan dont have the same thing with your eyes.

Joey: (Thinks for a couple of seconds...) Yeah, I know.

Me: We'll just keep on patching to try to get your eye stronger.

Joey: I wish there were no patches.

Update on Joey

2006-02-12T08:53:00.000-08:00

We saw Dr. T in November at his new office in a different city. I told him that Joey was becoming quite "combative" about his patching. He said, "Combative? That's a strong word!". But I assured him that I MEANT "combative"! He told Joey that patching was VERY important and that it would help his eye get better. They dilated Joey's eyes and Dr. T said that the retina looks dry, which means there is no apparent leakage...which is great! So, we just keep on patching, and go back in a couple of months for another routine appointment with Dr. T. (The drive to the new office was only a little bit longer than the drive to the Children's Hospital. Not too bad. However, we found out that he also has an office in a city closer to us.)

It's February now, and we are still struggling a bit with the patching. Some days he is very compliant, some days he is just pissed off about it. I guess "some" compliant days are better than "no" compliant days, right?

On an encouraging note - one evening while he was patched, he insisted on doing his homework. I never make him do his homework while patched, since I figure it will only frustrate him. However, I was VERY pleased to see that he did a great job! His face was practically touching the paper as he did it...but he DID it. The numbers were neat and right on the lines! I was surprised and very encouraged! He was really proud of himself, too. He even told his teacher the next day that he did his homework while patched!

Until next time...

Patching Woes - Again

2005-11-12T09:52:00.000-08:00

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...

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

2005-08-21T18:07:00.000-07:00

"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.

Patching Unmotivation

2005-07-01T09:14:00.000-07:00

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.

Coat's treatment - 2nd surgery

2005-05-27T09:37:00.000-07:00

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.

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

2005-05-05T09:48:00.000-07:00

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!

Just a Case Study

2005-05-03T09:32:00.000-07:00

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?

Patching Woes

2005-04-23T09:27:00.000-07:00

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.

Coats' Treatment - Laser Surgery

2005-04-20T08:56:00.000-07:00

(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.

I Wonder Why They Don't

2005-04-19T10:17:00.000-07:00

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.

Diagnosis

2005-04-14T22:05:00.000-07:00

(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.

First Eye Exam

2005-04-09T13:24:00.000-07:00

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.

Preface

2005-04-01T10:08:00.001-08:00

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.