I talked with someone today who really touched me.  She has known me for a while although we aren’t very close.  She asked me how I was doing and was very concerned for Christopher,Kevin, and Wayne.  It feels very good for people to ask how things are going.  During our conversation she shared with me that one of her own children faces a tough medical situation and she has had a tough time dealing with it, recently, it seemed.  I was very interested in her situation too and I can sympathize and empathize very well with her.  She is dealing with doctors who don’t seem to care about the situation she is going through.  We have gone through this with Christopher several times… we take him to a doctor… they won’t answer our questions… they don’t think something is serious enough to do anything… I know the drill (and, obviously, my friend understands it all to well too.)  At the end of our conversation she said something that has been said so many times to us (and we’ve said it so many times to others…) She said “I know it’s not as bad as what you are going through…”  I understand this sentiment and why she said it, but my wife and I have learned over the last 5 years that it is OK to feel strongly about our kids.  It is ok to worry about little things.  It is ok to have feelings.  We don’t have a choice in going through it … in taking care of them… we can be strong in the presence of others… but in the dark of night… when no one else is around… it is still our little babies… our innocent, beautiful children that suffer… and WE have to take care of them.  It is ok to feel bad for them (but just a little), to think “Why is this happening?”, etc.  And we should never feel guilty for feeling this way just because it isn’t as bad as it could be.  To my friend and anyone else who has a child with a problem that “isn’t that bad” or “isn’t that big a deal”:  Your child is just as important to you as my children are to me.  And you don’t have to “apologize” for talking to people about it or for feeling the way you do.  Both of those things (talking to someone and allowing yourself to go through the feelings of anger, resentment, hurt, etc) are what allow us to be strong.  And we must be strong because…

WE have to be advocates for our children.  Others won’t.  Even some of the doctors we see won’t.  We have to know… we have to really understand how it affects our children so that we can teach them how to be strong – in face of their problems.  Sure, there are always other cases that are worse… but that doesn’t “take away” the problems our children face.

Keep loving your kids and stay strong!  I sure love mine and I hate, hate, HATE that they have to go through what they do.  I don’t ever want to stop feeling that feeling of hate for the disease… that is what keeps me vigilant against the problems that could come up and make it worse.  And most of all… don’t feel sad for wanting the best for your children even when others think “oh… it isn’t that big a deal… I see it all the time…”  or “it isn’t thaatt bad…”  That is just ignorant, cold, unprofessional, and rude.  Take care!

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!

…tomorrow… is Laura’s Birthday.  It is also the day of Wayne’s first glaucoma surgery.  He is getting a goinotomy.  It has been a pretty tough day but we made it through it.  Thinking back it is a very significant day in our life… July 27th that is…

5 years ago… July 27th… Laura’s birthday… Laura and I came home from work for lunch.  We were both Realtors doing fantastic (before the market fell…)  Laura’s mother had quit her job to be our nanny for our first son… Christopher.  We were the happiest we have both ever been in our lives.  If you had asked either one of us that day, 5 years ago, how we were… we would have both responded that it was, by far, the best day of our lives.  A new child, 2 houses, new cars, lots of money coming in, lots of clients, 2 wonderful careers… we were living the dream…

5 years ago… July 27th… Laura’s birthday, we came home for lunch.  Christopher had been sleeping, taking a nap.  He was 1 day shy of 3 months old.  Laura heard him start to cry as he awoke from his nap, so she went to his room to get him.  She was so happy and giddy that she would be able to spend a few minutes time with him before we both had to leave for appointments…

5 years ago around… on July 27th… around noon… Laura screamed… a scream I will never forget… Christopher’s eye had turned completely white… no color… no pupil… the pressure in his eyes were so much that the fluid burst through his eye and made them “cloudy”.

We didn’t find out until about 6 or 7pm that night… July 27th… 5 years ago… on Laura’s birthday.  We were supposed to be celebrating her birthday with family and friends by eating out that night… instead we were in tears, shock, and fear for our son.

3 years ago, July 27th… Laura’s birthday… Christopher had one of his many visits to our surgeon to check his pressure.  We were working HARD to get him to do pressure checks in the doctors office so we didn’t have to go to the hospital for an EUA.  We started enticing him with a trip to the store to buy any toy he wanted, plus eat at any restaurant he wanted, and, basically, let him dictate the entire day… the days he went to Dr. Greenidge were his “special day.”  It worked as we haven’t had an EUA for him since he was about 2 or 3… you can read my earlier posts to find that out too.

3 year ago, July 27th… Laura’s birthday… we were at a Walgreens letting Christopher pick out his toy after his doctor visit… That is when we met the lady who introduced us to the TVI (Teacher for the Visually Impaired) program at FSU.  Her name slips my mind right now… Laura has been passionate about being in this program ever since.  She found her calling on that day and it had EVERYTHING to do with congenital glaucoma (and other things too.)

July 27th, 2011… tomorrow… Laura’s birthday… Wayne will celebrate Laura’s birthday by having his eye cut on.  He will be having his first glaucoma surgery.

July 27th… is forever a very significant day in our life… Laura said tonight when we were at dinner… Her birthday is now going to be celebrated on July 26th.  She doesn’t want July 27th as her birthday anymore.  I can’t blame her.

Today it is still July 26th (as I write this we still have about 45 minutes…), it is now Laura’s new birthday as of this year.  I just wanted to tell you baby… I love you… and Happy Birthday!

It truly is very hard dealing with this.  I am so thankful that my family has been very supportive.  My sister-in-law came down for several reasons, but while she is here she has determined to help us out in any way possible.  She has watched our boys for us while we try to take care of business and it has truly been a blessing.  My brother came down for a few days too … and we all hung out at my mom’s house on Saturday.  It was great time.  We had some friends come over and visit with us Saturday morning… thank you.  I’ve had several friends call me, and I’m sure Laura has had several call her… All of your fb wishes, thoughts, and prayers… we really appreciate them… and need them.

But, that looming feeling is here.  It permeates ever second, every action, every thought, every aspect of every day now.  I know it is coming.  I know the hurt and heartache, the disappointments (surgeries didn’t work, pressure is still high, cataract is now forming, now he has a lazy eye…), the helpless feelings, the anger… it’s all right here knocking on my door.  I look at my son and feel the guilt.  The guilt of knowing that I’m about to send him into a dark hole of pain, suffering, fear.  I know it is all for a “good” cause… nevertheless, it does hurt him.  He does suffer.  He will be terrified.  It is hard.  It will get harder.

I’m not sure if it is easier… or harder the second time around.  We know what is ahead.  We know what the chances are; the routines; the side effects of the drops; the time it takes out of our lives; the exhaustion it causes… does all of that make it easier to deal with or harder to deal with … I just can’t tell at this moment.  Maybe, I’ll revisit this a while later…who knows?

After scheduling the surgeries just last week… something changed in our everyday lives.  There is a definitive moment when Laura and I both changed.  We each deal with things in our own way.  We each deal with it very differently.  However, we both hold most of it inside.  With Christopher, we talked about all of it… all the time with each other.  With Wayne… we just can’t talk to each other about it … at all.  So, we hold it inside.  It does come out… in bad ways…  It intensifies our feelings.  We both go from ok… to irate in about 2 sentences or 2 seconds.  We get angry, upset, have an altercation that is really intense… don’t talk about it… then we just go on.  Still holding it inside… still letting it fester.  If there is a happy moment, a smile, a laugh, – I feel like crying.  It is an intensified state of emotions.  I’m not looking for a solution to this… I know how to solve it… I just can’t … right now.  We just have to deal with it for now… I guess.

It is hard…