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…

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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

Today. Tough. We scheduled an appointment for April 1st, to talk to Dr Greenidge about is concerns and his decision to put “implants” (valves) into Christopher’s eyes. My wife took Christopher for a follow up visit one week ago (This is only the 2nd visit in about 100 that I didn’t attend… ) when Dr Greenidge gave her the bad news that he wanted to do implants. We’ve been depressed ever since.

Today was the worst. A week’s worth of depression, sorrow, and worry is starting to take it’s toll. Laura and I are barely talking now. When we do… it is almost certain that it will be some sort of complaint or defensive comment. I am trying to stay calm… but I lash out at her for lashing out at me. I’m just no good at this whole “crappy life” thing. We both love Christopher so much that it is just too much to handle.

On top of what we deal with normally, My broker came to me and started offering to help in any way she could. She just did it at the wrong time. I don’t think, at first, she understood what sort of problems we face, daily, with this. So, she said she was sorry to hear things had taken a turn for the worse… and did what everyone does… started asking about the situation. The problem, as it always has been, is that it is difficult to explain to others that it can’t be cured, and that there is no way of “fixing” it. Then when she started to realize that it is a “deep” issue… she started offering help in many ways… she would love to babysit to let Laura and I go out, what do we need, etc. I just started to drip tears… not wanting to… but not able to help myself. It was a horrible feeling.

I really needed to stay late at work (I am behind on everything right now… after Laura left and I have to be the office manager and the lead agent on my team) and try to catch up on stuff PLUS I have to study for the state Mortgage Broker’s exam… but my wife got really upset that I wasn’t home to eat dinner. She just sounded like there was a real problem with that… even though we discussed 2 times today that I would be late.. unless I was able to get out earlier.

So, I decided that I would just come home. I don’t want this to tear us apart, but, unfortunately, I sacrifice work to come home. It is hard to make money if I can’t do what I need to do. Financially, we are in turmoil right now. We are living day to day. We aren’t the type of people to ask, beg, or borrow anything from anyone. So, we quietly scrape by right now.

Medical bills are mounting… we haven’t paid Laura’s deductible from last year $1,500 and we haven’t paid Christopher’s deductible this year $1,500. We spend about $10 per day patching Christopher – this is the worst part of all of this… we have to patch his right eye so that the left eye will keep working. He HATES them and cries, and cries, and rips them off at every chance he has to. This is why Laura stays home so that she can make sure he keeps them on. He just has such a strong spirit and won’t give up on it. Which is hard because, as parents, we want our children to be “fighters” and not give up. To endure through anything. And new we have to “break” him… It just keeps getting harder and harder to do.

Last year we spent over $11,000 out of pocket for medical bills – copays, premiums, 5 pairs of glasses, eye exams, patches, eye drops (another horrible part of our daily life! Twice a day we have to pin Christopher down… on the ground, force his eye open, and give him a drop of Timol – it stings him bad. He cries each time and says “it herwts… it herwts!.. ow… ow!”

So… long day… ended much worse than it started… and all of the problems are still here. That question keeps running through my head… all day… every day… WHY?

Why do I have to hurt my son… all day long with the patches? Why do I have to put drops in his eyes that sting him bad when he wakes and before he goes to bed? Why do I have to take him to the hospital 19 times and STILL have to worry about putting implants in his eyes? Why? Why?

This blog is good. Makes a good diary. I don’t really feel any better… yet… but this is the first time I can really feel like I’m talking to someone about it. I really don’t know who would even bother to read this depressing stuff… but it’s nice to get it out.

Maybe, just maybe, tomorrow will be better… I don’t really think that though… We will have a lot of sleepless nights and depressed days until we talk to Dr Greenidge and get some answers on the Implants. Why?

“The weight of the world…”  What exactly does it mean?  Let me share my thoughts…

A child, vibrant in every way…

soaking life up every second of the day…

Looks to his father to protect him.

Why so many surgeries?

His father cries “Why can’t it be me?”

As he hangs his head and weeps.

My son has congenital glaucoma.  This is a very rare disease and not many people have ever even heard about it.  Here is my story:

My wife and I came home from work for lunch one hot summer day.  We are both Realtors.  It was July 27, 2006.  It just happened to by my wife, My son’s mother’s birthday.  Christopher’s grandmother, my wife’s mother, quit her job to watch Christopher for us so my wife could come back to work… had just laid Christopher down for his daily nap.  We ate some lunch and about the time we were ready to leave… Christopher started crying… He was getting up!  We were happy that we’d get to hold him, kiss him, and love on him before we went back to work that day.  The next sound I heard, and I’ll never forget it, was my wife screaming…

My son’s eye’s had turned completely white.  No color.  At all.  Just a milky white color…Fear overcame all 3 of us that day as we ran around the house yelling and screaming for about 2 minutes.  It was surreal and it felt like we were in a nightmare.  Finally, as we came back to the real world… we understood that we needed to see Christopher’s doctor right away.  We packed up the car and drove straight there, calling on the way.  When we arrived… every one of the nurses and doctors were waiting with a scary, solemn anticipation.  The waiting room was cleared (extremely unusual… in fact, the only time I’ve ever seen our Doctor’s office this way) and we were ushered to a room.  The Doctor was there within seconds and she was extremely confused.  She mumbled a few things, shook her head, and left in a hurry.  The nurse came in and said that the Doctor was making a few calls and would be back in a moment.  30 minutes went by.  I felt something was terribly wrong… Surely, the Doctor knew what was going on… Right?   Wrong.

Finally, I left the waiting room… not a soul in sight in the hallway… no doctors, no nurses, no patients (I’m telling you I thought I was in the twilight zone at this point – I actually tried to wake up from this nightmare at this moment)… I saw a nurse dart out of the “No Admittance” area … so I asked her what was going on?  She pulled me by my arm into the Doctor/Nurses only area, sat me down at a computer and asked me to google “pediatric opthalmologists”!  What?  Are you kidding me?  There were 9 nurses and doctors on various phones and computers calling out names of people who may be able to understand what was wrong with Christopher’s eyes!  As I called out different Doctors and Groups of doctors – We’ve called this one already, That one works with so and so, Who is next… Give me that number! – I realized several things at once: 1) We had a major problem. 2) We had excellent Doctors (Even though they didn’t know what was wrong , they were willing to admit it… instead of trying to hide it.) – They were searching immediately for someone to help.  3)Life as I knew it was about to change – forever.

On the way to All Children’s Doctors Group in St Petersburg, FL… my wife, mother-in-law, and I were still very frantic.  We still had no clue.  There were 100 questions going through our minds… But mostly we just asked WHY?  That is a word I have grown to hate.  That word eats at me from the inside out – every day of my life and it competes with my every thought.  WHY. WHY! WHY? Doesn’t even matter how you write it… It is the same.

We left the Opthalmologist office around 7pm at night.  We knew what was wrong.  We just had no clue what to expect.  This doctor was 100% sure it was Congenital Glaucoma, he just didn’t treat it.  Once again, (a small light in this dark story) we were lucky – He called around for us and found us a Doctor that just happened to have moved here very recently who specialized in cases like Christopher’s.  Dr Greenidge.  There is a name that brings tears of hope and makes my heart beat just a bit faster when I say it.  (My son, only 23 months old now, even says it.)  We couldn’t see him until the next day… Friday.

The ride home was dead silent.  All 3 of us hung our heads … almost in shame.  It was one of the longest drives I’ve ever taken… I don’t remember seeing a thing.  I just remember that damn word… WHY

The internet is an amazing thing.  It is a GREAT thing… and a HORRIBLE thing… And everything in between!  And we got all of that as we searched for everything we could find on his condition.  We didn’t sleep a wink that night as we both – silently – searched, and searched, and searched.  There isn’t much to know about it.  It’s pretty simple really.  The “drainage” system in the eyes – just didn’t form properly for Christopher.  He has Glaucoma.  It can’t be fixed as easily as someone who develops glaucoma later in life.  It can only be fixed with surgery… invasive surgery… painful… esploratory… sensitive… surgery… after surgery… after surgery… after surgery… after surgery… after surgery… after surgery…(19 trips to the hospital so far… about 100 visits to the specialist – doctor visits.)

So… That is how it began.  You would think that it gets easier… it doesn’t.  In fact, it seems to be getting worse and worse.  I’ll continue my story next time… I’ve got a lot to share… I don’t even care if anyone reads it.  It just feels good to get it out.  After 19 months of having it pent up inside… it is getting to us.

The weight of the world is:

Having a beautiful son… who has an energy that is unmatched… who doesn’t stop for anything… keeps going… soaking life up… learning… loving… smiling… laughing… growing… UNTIL… you put him in a car seat… and he smiles at you for a solid hour as you drive him to the place that is going to stick him with needles… put him under anesthesia…  weigh him… prod him, look at him, take him away from you… take his life away from your hands… drill holes in his eyes… cut his eyes… take measurements… then give him back to you screaming as he comes out of the surgery… crying as he looks for comfort… confused … just this morning… he was happy as could be… and now… all this pain… I can see it in his eyes… “Why Daddy? Why?  What did I do?  Why don’t you stop? Why do we keep coming back here? Why can’t the doctors just fix it?”

I feel like I’m weak… there are countless people who are a lot worse off than Christopher.  His biggest threat to his life is the anesthesia that he has to get every time he goes under… I understand that.  What is so hard to understand… is how much work it is to deal with this every day.  It just never ends…