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 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.

I haven’t written in a few months… it has been a tough battle… and now we feel like we are coming out of our “funk.”

Christopher had a trabeculectomy about 2 months ago.  It came as a total surprise too… We were expecting to have valve implants… but when the Surgeon entered the eye… he said his eye tissue was just too thick and that he didnt’ believe the valve implants would work efficiently at all… so he elected to move forward with a trab instead.

We were stunned, shocked, distraught, dismayed, all that and more.  Our son is only 2 years old and according to the research we’ve done… he may never be able to swim, play sports, etc.  This is just horrible news for us.

The post op was excruciating – in fact, we are still in “post op” as we still have to administer drops about 4 times per day.  This is a breeze compared to what we went through for 3 weeks following the trab.  Drops every hour – on the hour – even through the night.  We had to rip the shield he had on … off of him for every drop… then tape it back on.  Our son fought us the entire way… he HATES drops, shields, patches, etc. and he is very strong, stubborn and he is a fighter.  The combination of all of that equaled – a very difficult, tiring, exhausting, emotional 3 weeks!

But, since then for the last month and a half…our spirits have risen to a higher plateau than we ever thought would be possible again!  My real estate broker – Susie – made it a point to find out what we were going through.  Then she took steps to get us some help – emotionally, physically, spiritually, and financially.  We have never seen an outpouring of help and encouragement in our lives!  Everyone at the company I work for (as well as many other companies) came to our aid and did countless things for us.  I don’t have the time to explain everything that was done, but here is a synopsis:

Dinner’s were made for us – every night – for weeks on end!  Amazing!  Medical supplies donated to us.  Lots of gift cards and money was raised and given to us and it couldn’t have come at a better time.  Encouraging words.  Cards.  Support.  Words just can’t make other’s understand what this did for my family!  Thanks for any and all who helped us out!

We aren’t out of the woods just yet… but there is HOPE.

I have tried to stop asking the question WHY so much… I am still tormented over it at times… but I’ve tried to allow myself to climb out of the mental mess that I’ve been in for a couple of years.  It hasn’t been easy, but I’m getting better!

Christopher is doing just great at this point.  He is up to 27 hospital visits/surgeries.  The trab seems to be working – at least for now – and with this horrible affliction that is all we can hope for.  Now… we just hope for longevity!  He is the smartest kid in the world (I think anyway… lol) and he brings complete joy and happiness in our life!

Now… we have a whole new set of worries… We found out over the weekend that my wife is pregnant again!  We are overjoyed and extremely happy and excited!  At the same time…we’re worried b/c congenital glaucoma is funny.  I thing the chances of a sibling having the same condition (at least boy/boy siblings) is something like 1 in 4!  That is horrible odds considering that it is extremely rare to have a child with one in the first place!  Amazing!  Now what?  At least we know what signs to look for and what will/could happen should our next child have it.

Anyway, life is pretty good for now… for today… and we’ll relish in it.  Hope is all we have for the future of Christopher, our next child, life, etc.  Maybe now when I ask the tough “Why?” Questions… I can at least counter them with “Hope…”  there is hope…

I have also decided that I will be getting a tatoo – something to do with Christopher and his eyes… haven’t quite decided yet… but I will be getting it soon.  I actually decided that I would be doing this a year or so ago… and now I’ve decided to get it done soon (I want it before our next child gets here.)  I just feel like I’d like to have something on me that reminds me how precious Christopher is, and to not take anything for granted – eyesight included!

My wife and I have also decided to look into joining the Lion’s Club.  They were a huge help over the past few months and actually helped us out in so many ways.  We have always been giving people and want to give back to an organization that we absolutely have a strong affinity towards!

Ok… that’s it for now… some good, upbeat news for a change!  Wow!  Feels good on this end too… lol.

Til next time…

chris