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.

Advertisements

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…

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?