It’s been a while since I last posted an update… we have been b-u-s-y! I don’t have time to catch up everything in this post (but I will try to later), but I did want to let you know about a few things…
Our oldest son Christopher is a really bright child. I’m not saying that just because he is my son; and I’m not just being a “proud father” either. He is really a smart kid. For instance, he ponders about what happens when you die, where babies come from, can do multiplication (he is a kindergartener remember), and loves to sit for hours and either read or listen to me read (we just finished the first book in the Chronicles of Narnia… he hung on the edge of his seat every moment we were reading the book!) So, he is smart… too smart…

We have had company for the last week and it has been very hectic around our house. Laura’s sister and her 4 kids have been visiting and the youngest 2 are best friends (cousins actually) with Christopher. They stay up late, eat together, play together, and, yes, fight constantly. Needless to say keeping them busy and still taking care of the daily chores of life has been a challenge. Well, a few days ago we woke up and after about an hour or so Laura asked Christopher if she had given him his eye drop. He said “Yes, mom… of course you did.” Laura really didn’t remember because we get so very busy. I mean at the time my middle son couldn’t talk because he had bit his tongue so hard he needed Tylenol constantly, my youngest had an earache so we were giving him pain medicine on top of the eye drops he gets in the morning, changing diapers, getting breakfast ready, making coffee, etc, etc… So, she really didn’t remember. No problem… she had given it to him and it is so routine now that we do it without even thinking for Christopher. Drops in the day and drops at night… got it!

Fast forward to two nights ago. Our night-time routine is just as busy. Dinner, show, snack, drink, relax, book, brush teeth, eye drops, sip of water, potty, kisses, hugs, tucking in the bed, (all times 3 with variations for each!) Busy… I’m in the bathroom brushing Kevin’s teeth (as he is screaming and crying because his tongue is really hurting when I do it) and in walks Laura. She asks “Did you already give Christopher his eye drops?” Oops… I didn’t remember… hmmmm. After talking with Christopher… we decided that I did.

Yesterday morning. I’m at work. I get a call from Laura… “Did you give Christopher his eye drops this morning?” No… definitely no… no doubt about it… I didn’t “forget if I did…. I knew that I had not … positively. “No” I answered. “He said you did … just like he has been saying… very convincingly” she tells me. Uh oh…

It seems he has realized that he can play on our business and our splitting of duties to get out of them. We have taken it for granted that he understands how important it really is… and we do ingrain that into him each and every day… but he still doesn’t want to take them (who would?…) Of course, we have had more conversations with him and we explain how dreadfully important they are for him… but, still, I worry… what about when he is a little older and he is doing them himself? We will be watching him do it for a long time, I’m sure. But at some point we’ll be relinquishing those duties to him entirely. Will he understand and commit to making sure they are put in everyday… day and night… without fail? I wonder…

I guess it is true that you can be too smart for your own good. I just hope Christopher isn’t… in this case.

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Wayne had his 4th surgery which was his 5th trip to the hospital.  From here on out… I will simply call them all “surgeries” since he has to do the entire process… check in, physical, drops, pokes/prods, take him from us, anesthesia, IV, breathing tube, clip his eyes open, check pressures, etc.  He won’t actually have surgery on his eye(s) each time… but for us and him… it is surgery.  So, like I said, Wayne had surgery for the 5th time Monday, at All Children’s.  The doctor said the pressures were 14 in his right eye (after surgery the week before with no drops) and that is just fantastic!  I won’t get my hopes up… but for TODAY that is great.  My wife is letting herself feel a little excited (as is the doctor… we can tell) and that’s great for her… but I’ll stay a little pessimistic about it all – if you don’t mind.  He doesn’t go back for 3 weeks and we are hoping that his pressures will be low in both eyes so we can avoid any cutting on his eye.  That’s always what we are hoping for… low pressures.

We have officially begun a new chapter in our lives… Christopher has begun Kindergarten!  Yah!  It is a bittersweet feeling – we hate having him with someone else all the time… not knowing what he is doing every second of the day, but we LOVE that he is able to be around others in an environment where he will thrive.  He is already impressing everyone he meets too!  We are not even through a whole week yet and he has already settled in to the routine.  We’ve almost got a set routine in the morning.  It’s really weird how much your life changes in only a week!  Before this week… we all woke up around 7:30-8am.  Ate breakfast.  Cleaned up the house and ourselves.  Finally, decided we needed to get out and do something around 11:00am, but most times it was too darn hot!  Nap time.  Rack our brains to figure out what to do in the afternoon.  Boredom.  Not now!  Up at 5:50am… show… get dressed… light snack… out the door.  I actually get to get some work done… and I get to start it at 8:00am instead of at 10 or 11am!  Wow!  lol

Kevin has started school too.  We had to get him enrolled in pre-school because Laura is taking a full load this semester and I am trying to get a full-time job.  And in January, Laura will be interning full-time.  She is almost done with the first step of living her passion… being a teacher for the visually impaired.  Just this month she took her “Professional Educator’s Test” with the state of Florida and passed!  First time… Yah for her!  So, Kevin started school this week too.  Monday he cried the entire morning… didn’t eat… was really fussy and seemed miserable.  Tuesday, a little less crying… still pretty fussy… and not happy.  Yesterday, he wasn’t fussy at all… but didn’t want to “go to school” either and let us know it.  Today, he was happy all morning.  No crying.  No fussiness.  Happy.  And he knew he was going to school.  Amazing how quickly kids adapt.  Scary too.  And … sad.

A new chapter has officially begun.  So much has changed.  Even “the eye wars” have shifted focus a little.  Since Christopher’s pressures were fine last visit a week ago and he doesn’t have to come back for 3 months… we have begun to ready ourselves for other sinister attacks on his vision… mainly… PINK EYE!  😦  It is so prevalent in school and it is truly a scary thing for him.  But we’ve prepared.  We are vigilant about checking his eyes.  We have taught him to wash his hands all the time for cleanliness.  We’ve wrote it on every form the school has that we need to know if anyone in his class has pink eye… right away.  We’ve made best friends with everyone that works at his school that we possible can at this point.  We just want to make sure his eyes are a priority in his life.  It is a lot of work… But, I’d MUCH rather be worrying about potential problems than high pressures and surgeries right now!

Even though it is a new chapter… we are, of course, still in the same book.  Same overall theme.  Same tone.  Same characters.  But I will happily take the new chapter.  In fact, I will still take it one page at a time…

Wayne had surgery yesterday.  It was his third surgery (4th visit).  Don’t worry… I’ll keep track for you.  Christopher had 31 visits to All Children’s and although a lot of them were EUA’s… they were all surgeries to him and us.  He has to go under anesthesia, get a breathing tube and an IV… it’s surgery.  I’m sure there isn’t one person reading this blog who even cares to differentiate between a major surgical procedure and a “simple” EUA, but I feel the need to explain it for some reason?  Weird.

Anyway, Wayne had ‘real’ surgery yesterday.  Goinotomy on his right eye.  The doctor said he was able to cut “10 hours” (as in – if the back of the cornea were a clock he was able to cut about 10 hours around it…) and that is good.  Probably won’t be able to do another Goinotomy on that eye though so it better work.  If not… were going to move to more serious procedures… sigh.

Next Monday, Wayne will be back at All Children’s yet again.  It will be a ‘real’ surgery on his left eye.  We’ll see how his right eye responds then.  And it goes on.

Why the eenie, meanie, miney mo?  Well… before we did the first surgery on Wayne’s right eye… we noticed all week leading up to the surgery that his LEFT eye was tearing, larger, and seemed to be bothering him more… but the Dr said the right eye needed the surgery more because the pressure was higher, the optic nerve was more affected, etc.  Then when he did the surgery on the left eye the next week… his eye had a tear in it.  Before yesterday’s surgery, all week, Wayne has been having problems with is left eye again.  But the Dr. said the optic nerve was more cupped in the right eye, so he did the goinotomy in the right eye.  Today, Wayne’s left eye is tearing so bad we can’t keep it dry!  I completely trust and believe in our Dr.  I really do… it just seems to be a guessing game as to which eye is more troubled.  I just hope that when we do surgery next Monday on the left eye… his eye hasn’t become a lot worse!

Another reason for the title….

Monday is the first day of school for our ‘lucky’ child… Kevin.  The one who escaped glaucoma.  This is the first time, ever, in his life that he will be going to another person for care.  One of us will have to NOT be there for his first day.  Which one… eenie, meanie, miney, mo!  This one was easy though… Laura breastfeeds… so she’ll be going to surgery and I’ll be taking Kevin to his first day of school.

Tuesday, Christopher starts Kindergarten!  He also had a visit with the Dr. today and his pressures are 20 in both eyes… Good pressures for us and stable enough to not need to see the Dr. again for 2 months!  Yah!  So his first few weeks/months of school will (hopefully!) be ‘normal’!  We are so excited for him too!

Well… that’s it for now… til next time…

PS… We’ve been doing pretty good at keeping a positive attitude so far… Hope our emotions hold out… but more importantly I hope our boys eyes hold out…  take care…

Our daily life with, now, 2 boys struggling with congenital glaucoma can be, at times, hectic and confusing.  We are managing it… but we are realizing, very quickly, that we must come up with a system.  Just a couple of days ago Laura confessed to me that she accidentally gave Christopher an eye drop in the morning, that he takes at night, and didn’t give him his morning drop.  What should we have done?  We figured it out, of course, and it wasn’t a debilitating mistake… but we have the task now of getting much more organized so that we won’t let these sort of things happen.

Wayne takes a drop of Xylatan in each eye, nightly.  He gets a drop of Tobradex in his left eye 4 times a day… until Saturday.  But, we go back for surgery in 2 weeks and he will have to start taking it again in whatever eye(s) are operated on that day.  He may stop taking drops in one or both eyes that day too, or he may be given more drops, or different drops!

Christopher takes a drop of Timolol in each eye, every morning.  He gets a drop of Xylatan in one eye, nightly.  No Tobradex (which is a powerful recovery drug for use after surgery, mostly) since he hasn’t had surgery in a few months.

Now, add in to the mix that Christopher sees Dr. Greenidge about once a month (sometimes twice, sometimes every 2 months… just depends on how his eyes are doing.)  He sees Dr. Mendelblatt about once every other month.  Wayne sees Dr. Greenidge, presently, in the office, about 2-4 times per month, and goes to All Children’s for surgery, so far, about every week to 2 weeks.  This will go on until we get the pressures somewhat stabilized.

One last factor:  We have a middle child, Kevin, who doesn’t have glaucoma.  He is growing up thinking that going to the eye doctor 5 or 6 times a month is normal, surgery at the hospital is a part of life, living in the dark with blacked out windows is normal, eye drops are normal – except for him… does he think he is the one who isn’t normal?  lol.  He also has to be taken care of and given attention.  This is quite the task as we don’t want to treat him much “differently” while at the same time… he must be treated a little differently.  He should be allowed to participate in sports, swimming, etc…. shouldn’t he?  These are tough questions that we are trying to work out.  We will eventually.

Add to that our crazy schedules:  Laura is a full-time student.  Summer just finished and in the fall she will be taking 3 classes at night, studying daily, and interning weekly.  I am a full-time Graduate student, I’m also studying for some Microsoft certifications (Web Developer/SQL), and, hopefully, will be working full-time soon.  Laura’s mother, my mother, and my sister’s often help us out by babysitting.  Christopher will be starting Kindergarten this fall.  With all of the “caretakers” in our son’s lives now, combined with the movement from one to another, daily, in what is a dynamically changing set of schedules… missing drops, coordinating drops, giving drops, scheduling Dr. visits for each so that we don’t make too many trips, etc… can be a huge challenge!

However, we are settling in… It is OUR life.  We are starting to embrace it.  We will manage it… just fine.  🙂

PS… Wayne is doing pretty well after his first 2 surgeries.  He seems to be much happier (and less fussy), even though his eyes are, I’m sure, sore.  His pressures must be a good bit lower and he must feel much better due to that.  His right eye went from 45 to 28 after the first surgery.  We don’t know what the left eye has gone to after surgery yet as a pressure check won’t be done until his next surgery, a week from Monday.  We are, of course, hoping for a great reduction, but we expect a little.  (His left eye pressure was around 42, I think.)

Thanks for all of your well wishes, offers for help, and interest in our boys and our family!  We can’t express how much it helps us through it.

So, after 5 years, it still hurts.  And hurts.  And hurts.  Congenital Glaucoma is definitely the gift that keeps on giving…  With two boys out of three having it, it is as much a part of our lives as peanut butter and jelly.

I had a conversation today with someone close to me.  They said that they were “very optimistic” about Wayne’s prognosis and future.  Both surgeries have gone “great” and that being optimistic was better than being pessimistic.  I had to make a stand… for my sanity… for my future…and for my family.  I had to disagree.  Here’s why…

First, I am very happy that the surgeries “went well.”  That simply means the doctor did everything he was supposed to … very well.  Wayne made it safely through it.  The eye reacted physiologically the way it was supposed to… everything – the mechanics – of the surgery went well.  That doesn’t mean we should throw our emotional armor into the lake… never to be worn again… and assume that since the surgeries “went well” … his disease will be halted, slowed down, or cured.  Experience has shown us time and again for the last five years that it has no correlation to the progress of the disease.  Mainly, because you can’t just cure it… you can’t just “know” what the next step to do to treat the disease is… you can’t just “stop the pressure”… it is a guessing game.  The doctor makes guesses and assumptions and does his best based on 30 years of experience… but in the end… the eye pressure always goes back up.  At least for us.

We lived our life being “optimistic” for the last five years.  Every single surgery, EUA, and office visit we “expected” to hear good news.  Almost always… it wasn’t.  We have been on an emotional roller coaster for 5 years now because of optimism.  It has drained us financially, emotionally, spiritually, and in every way imaginable.  I, for one, am done with it.

My new “leaf” is pessimism…or at least it will be “realism”.  I say that if I expect that something will be wrong with his pressures… and that they will keep getting worse… and the we will have to go to more and more surgeries … Then, when it does happen… I won’t be let down.  It will be the norm.  If it turns out I’m wrong and things get better… then whoo hoo… I am happier than I expected… But what I’m done with is the false belief that this disease can be controlled or fixed in any way.

That being said… I’m done with my depression… my sadness… It is time that I get “realistic” about living life and showing all of my sons that we can take this disease… and win.  It is time to lead my family back into the game of life with a winning attitude and show them how to fight for what you want.  And what we all want is a a break from the sadness… from the heartache… from the letdown… from the exhaustion… from the fear… from the hurt and pain.  We want a little happiness for a change.  That’s what were going to get.  It is a fight… a war…

We will win it…

Coming soon… a new name… a new site… a new attitude… Stay tuned!

We have a wonderful new boy!  Wayne.  He is now 8 weeks old.  Healthy as can be… but we can’t help but worry.  We seem to “see” cloudy eyes, sensitivity to light, and one eye slightly bigger than the other.  We, finally, took him to see our primary care physician to get a second opinion before freaking out and calling Dr. Greenidge (who has already seen him twice.)  Our primary doctor said it seemed that his eye was… just a bit cloudy looking and that we should see Dr. Greenidge.  That was around 11:00.  We, of course, called Dr. Greenidge and basically told him we would be in asap.  Our appointment was at 1:30pm.   It was the longest 2 1/2 hours I’ve ever lived through.

I can’t explain every emotion that we went through, but I’ll try to tell you.  First, I went completely numb.  It wasn’t the same feeling that I had with Christopher.  With Christopher we didn’t have a clue what was wrong, so we were very scared, upset, and confused.  We were feeling a terrible sense of horror with his eye turning so white and cloudy so fast.  But, we didn’t know what happened, what (if anything) could be done, or time to worry as we were constantly on the move that day.  First, our primary (who at that time had NO clue what it was, what to do, or who to send us to) where we spent about 2 hours before, finally, being sent across the bridge an hour away to a specialist.  Then to the specialist where Christopher was diagnosed.  We at least knew what he had by then.  Then back home to bed (we finally got home about 8 or 9pm that night.)  Then we were both on the internet all night – sleepless and worried – researching the disease, the dr we were referred to (Dr. Greenidge) see the next morning.  Then to Dr. Greenidge where we started a 4 surgery marathon.  The rest, as you know, is history (and you can read about most of it in my earlier blogs.)

With Wayne it was a complete numbness.  I couldn’t help but compartmentalize those horrified feelings.  They were there… clearly… and I could understand the feelings… but I didn’t feel them.  The tears were right there – ready to be spewed out, uncontrollable… if I had allowed it.  The sick, spinning in my stomach was right on the verge… had I simply let it start.  The gagging  that would make me sick was right in my throat… but …  I didn’t let it happen.  It was if I was seeing myself from another part of my brain “experience” all of those things… without actually experiencing them.  And that was almost as bad as being able to feel them.

While the physical symptoms were able to be put in a glass room within me, my thoughts about the implications were not.  First there was the thoughts about the terrible pain we were going have to put my 3rd son through.  The countless trips (one hour each way) to both Dr. Greenidge’s office and All Children’s Hospital.  Having to waking him up at 4 or 5am to be at the hospital for surgery.  Visions of the hours, days, weeks, months, years, and life of torturous pain (from surgery, drops, etc.) he will have to experience.  My wife and I having to hand him over to doctors and nurses to force him to sleep against his will, cut him with a scalpel, poke him with all kinds of instruments.  Then having to comfort him through the hours of crying because his eyes hurt and he has no clue why?  I thought about having to patch him and pray that he didn’t accidentally poke his eys.  Of having to force open those surgery-sore eyes and put drops in his eyes that more than likely sting.  It was really hard imagining the days ahead for him.

Then I had a new worry – not present with Christopher – How would Kevin and Christopher deal with all of this torture?  Christopher already gets VERY agitated and upset if his brother is hurt or crying in any way.  He has even tried to hit me because he didn’t know what to do before because Kevin was crying and I was trying to console Kevin.  He didn’t know if I had caused it or not… but he was upset and really sad that Kevin was crying.  What would they think of Wayne?  of Me and Laura (as we have to make our baby cry by taping shields to his face, peeling off the tape, forcing open the eyes to put drops and gels after surgery, and drops if needed?)  Wow… another side effect to our lives of this horrible disease.

I was also worrying about the effects it was going to have on our life.  Christopher’s diagnosis changed our lives – forever.  In so many ways… good and bad.  What would this one do?  We are still dealing with the valve surgery that had to be done on Christopher recently.  It was very stressful.  He had to wear a shield at nap time and at bed time for over 6 weeks every night!  Drops 4-6 times a day.  Christopher cried almost every day for the first 3 weeks every time I peeled the tape off of his eyes.  And I can’t tell you how many times a day we had to tell him to “Wash your hands” and “Don’t rub your eyes!”  How would we deal with this too.  Laura is one semester away from being done with school (plus a semester where she will intern.)  How would she be able to attend 4 classes and deal with this?  How would I be able to finally get a job after all of my computer retraining classes?  We are on the verge…literally … the cusp of finally repairing out life to where it should be.  How in the world can we deal with this too?

As Laura and I drove to across the bridge (remember it is an hours drive) we didn’t say too much.  Laura tried to talk to me… but I just couldn’t bring myself to speak too much.  She expressed some of the same fears I did… Mostly, we were both in complete shock that we were making this drive… again.  It was, simply the longest drive I’ve ever taken.  Ever.

We arrived at Dr. Greenidge’s office and signed in.  It was packed.  We waited over an hour before being called.  When Dr. Greenidge arrived he took Wayne from us and very sympathetically asked us what happened.  We explained our concerns and that our primary had some of the same concerns and here we are.  He took a long, long look into his eyes.  Wayne started crying and screaming almost immediately and didn’t stop until he was back in his daddy’s arms.  He hasn’t really been held by very many people and he is very attached to both his mom and dad right now.  It was very scary to him to be looking at and to be held by someone who wasn’t us (was he going to have to get used to it like Christopher.  I still remember when Christopher was almost 2… he was very mature and would sit on the gurney… he would cry as he was wheeled to surgery waving to us as he drifted farther and farther away… but he was old enough to know that he had to have the surgeries at that time.  Hell, he had been down that hallway about 30 times at that point.)

Dr. Greenidge held Wayne… looked at us with a solemn face and very patiently said… “His eyes look perfectly clear to me.”  He smiled.  We got home around 5pm and we were just as exhausted as we were after a day or two of no sleep.  Just the memory of and the worry of what “could be” is completely terrifying and exhausting.  However, we slept really good that night and I don’t think I’ve hugged all of my boys as much as I did that night… in my life.

It has been a looonnggg time since last I posted here.  Today – I am very sorry that I’ve waited so long.  Why?  Because today things are bad…

It’s just hard to go back and try to tell you how wonderful life has been for the past nine months.  I wish I had taken the time every day to explain how “normal” life was.  It really seems like it was… at least I think it seemed that way.  It’s all so fuzzy, now, today.  Christopher graduated VPK (with honors too…lol  he was truly the teachers pet b/c he is so smart!)  We are in the process of enrolling him for Kindergarten – with all the joy that brings.  He has blossomed into a little man… mature beyond his years.  The truly wonderful words escape me to iterate to you how happy we all were over the last 9 months.

Today his pressures were at 32 in the Right eye and 20 in the Left eye.  Wow.  It brought me to my knees literally and figuratively.  This is only the 2nd or 3rd appointment I have ever missed… why did I miss it… because I have finally started (since our world first came crashing down with the onset of his glaucoma) to rebuild our life.  In fact, my post yesterday on Facebook was

“Wow…. What a great day today is! 🙂 It is the first day of the rest of my life. I feel like I’m headed in the right direction. This is the first time I’ve felt this way in a long time and it feels great!”

…Then, today happened.  Isn’t there a saying ” S&*^ happens!”  Well for me… “Today happened.” My 9 month pregnant wife (with our third boy) and her mother took Christopher to his eye appointment today – it almost sent her into a breakdown.  The doctor was so upset and realized she was so upset that after the appointment he came out to comfort her at her car.  That is how much of a totally shocking surprise this all is.

Glaucoma… this is the word that terrifies me to my core.  It seems like such a simple concept too… too much pressure in the eye… can’t we just “release” it somehow?  But, and I know this, it isn’t that simple.  What is simple is this:  I absolutely HATE it.  I hate what it makes me do to my son (surgeries, drops, feelings of pity for him), I hate that it causes him so much pain, and I hate that I am helpless.  Most of all… I hate the unpredictability of the disease… You think you have it controlled… and surprise… it puts you right back on your back.  It seems (emotionally) like all of this is happening for the first time … again.  I sit here with tears streaming down my face… a wreck… and it is this that I need to “blog” about… that is why I am sorry it took so long to update.  It is all just overwhelming…

“Christopher… I love you son… I hate this disease and I hate that you have it… I would do anything to take it away… but I’m truly helpless… ”

PS… I have been reading a book to my boys almost every night titled:  “You Can Do Anything, Daddy!”  … What a joke…  O how I wish I could…

and Sorry for the sad post after so long… I’ll try to post sooner.  Maybe, just maybe, I’ll have some good things to post… we’ll see…