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.

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.

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…

Of course, the same old story… “Unfortunately, we’ll have to see exactly what we need to do when we go in the eye again… on April 28th.”  Sucks.

I love our doctor… he is very realistic and calming.  He knows what he is doing.  He answers our questions. He is sure of hand. He is fantastic at what he does.  I am very thankful that we have him, Dr Greenidge, as our doctor.

That being said… I hate this disease.  I hate this disease. I hate this disease!  We found out today that Christopher will, more than likely, get implants in his eyes when we go to the hospital on 4/28/08 (*His birthday by the way… woopee…Happy Birthday, son… a new set of Valve Implants for you!  Don’t you just love daddy now!)  That is going to be extremely tough to deal with, since we’ve tried NOT to have to do that since day one of this.  Dr Greenidge said that he’s had pretty good success with them and that we won’t be using the Ahmed valves… he prefers the ones without “valves” since it is one less thing that can stop working.  I guess that is good.  What do I know…

Anyway, I guess the idea is to get the pressure down from a normal range of 20-22 to a (from what I can tell after today’s consultation) “lower” normal pressure of around 12-16.  I guess this is really important for Christopher, since he has lost a lot of tissue from his Right Optic Nerve.  This is bad news.  If we don’t get the pressure much lower than “normal” he could lose much more, or even all of, the cell tissue there and go, of course, blind.  (*Just typing that makes me shake a little… and makes me feel a sick, sinking feeling inside.)  So, we put a valve in… see how it “takes” (I guess the first few months with them in are the hardest part), and put another one in if the first one isn’t enough.  Just makes me sick that I have to put my innocent, 2 year old son through this. (<scream>)

On the 1 hour drive home today, from the doctor’s office, my wife and I dreamed about what life would have been – had nothing ever gone wrong with Christopher’s eyes.  This is a pretty revealing thought process:

Christopher would be in Montessori School… He is such a bright child… and that would only encourage his desire to learn!  What a nice dream!

Laura and I would both be working… and we’d be on top of our profession… not near the top… on top!  We’d own our town as Realtors… we wouldn’t have ONLY WORKED an average of 15 hours per week over a year’s time (the first year Christopher had is problems) … instead… we’d have worked full time and more… and made a killing… instead of losing market share… losing drive… losing focus… losing opportunities…

Laura’s mother, who quit her job of many years to watch Christopher… just after he was born, would still be watching Christopher… we had to have Laura stay home because of the emotional and financial strain of all of this just after she went back to work with me.  So, we had to let her go… and she then had to find a new job… That was pretty difficult for her.

Our son would love being outside in the sunshine, here in sunny Florida!  Currently, he absolutely hates the sun.  It is a huge bother to him.  It pester’s him and makes him extremely tired… since we patch his right eye to make his left one stronger… the sun only bothers it and irritates it.  He mostly just wants to sleep outside if it is really bright.  And summer is on it’s way… woopee…

Just the money, out of pocket, alone we’ve spent… we’d be able to do a lot more for our future… (about $30,000 over the last 2 years so far… out of pocket!)  Wow… what a large amount of money this has caused us to spend… in addition to about 17 hours per week of lost work time… and completely forcing one of us out of our career.  Amazing… Astounding.

We’d actually be able to hire a babysitter every now and then… It is just so difficult to even “want” to get out… after dealing with everything this encompasses … every day… every night… all day… all night.

We’d still be lost and frightened when we have to go to the hospital… I’ve had 2 surgeries in my life.  I hate hospitals.  Up until this happened with Christopher… I didn’t know the first thing about Health Insurance, Hospitals, Intake, Billing problems, etc.

We still wouldn’t know what in the world – some things were – opthalmic pediatrician, congenital, congenital glaucoma, trabeculectomy, myomiticin C, goiniotomy, goinosurgery, muscle light, the entire workings of the eye, hab strius (sp), corneal tear, cosopt, trusopt, timolol, eye myd, ahmed valve, and so many more things… weird.  Never even knew these things existed.  Never cared.  Now… I hate them all.  But Necessary… I guess.

And, oh… the things I’ve learned that are so important now to us… and we would have never cared about these things in our dream:

There is about a 1 in 100 chance that a child can die or be severely hurt every time they go under the anesthesia.  Let’s see… 20 times as of 4/28 … in 2 years… that makes 10 more years… until 100… so… by age 20… he will be defying the odds, provided nothing happens to him until then!  No, we won’t need as many surgeries, we hope, by the time he is about 5 or 6.  But, the way our luck has been… I won’t hold my breath.

I could write for hours on the different research that has been done on “eyes” that have been operated on… the good reports… the bad ones… researching if this surgery or that treatment is better or worse than an alternative… if this valve or that valve is better (silicone or polypropelne?) (valved or non valved?) (trabeculectomy vs. trab + trabeculotomy + myomiticin C or are either one of them better than valves?) (valves more effective if implanted at age 1, 2, 3, and for how many years… 90% at year one, 70% at year 2, 40-60% at year 3…) ouch… lots of info in my head since this all happened.

Maybe, there would be a chance that I would still be an eternal optimist!  I had been up to that point.  I remember smiling so much that my cheeks hurt… quite often.  Now… I don’t ever think I’ll smile enough to hurt my cheeks… ever.

Life would truly be a “dream.”  And what a dream it was.  We didn’t cry… like I thought we would when I envisioned us having that talk (I’d thought about it many times… but it is hard to actually talk about it….) we were just… solemn….

One last thought came to me just now… and I’ll end on this note… it is a very sad one… one that is actually bringing a fresh wave of sorrow to me… I remember boasting to EVERYONE I knew… for a solid 3 month … almost up until the day my son had his first symptom (his eye turned white)… I remember the “pride” I exuded over MY son…. telling everyone… every day… someone new…

“My son is as healty as an ox!  That’s what the doctors keep telling us!”

Boy… what a horrible, tragic mis-belief that was.  I went from top of the world … to… as low as I could ever get… emotionally.

why? why? why?