Ok.. it HAS been a LOOOONNGGGG while since I last wrote.  I’m so sorry.  Life just gets me down sometimes and I lost focus.  I am so very sorry for not informing all who are interested in the condition of our beautiful son, Christopher, of his progress…

He is doing great for now!  His pressures have been in the low teens for the past 6 months, so the trabeculectomy has been working the way it should!  Great news!  Now we just hope for longevity – that is we just hope that it continues to work for a long time.  From what we’ve read we think that 8 years would be a good long time.  We, of course, hope that it lasts for 80 years… but, I think that is just dreaming at this point.

Some things that have happened in the last 6 months… Christopher went from an extremely rigorous regime of drops (every hour for a few weeks… even through the night… ripping the shield off… taping it back on… ripping it off again… pure hell…) to taking his LAST drop from the post op – on November 13th!  His Dr – Dr Greenidge – slowly reduced the number of drops over the last 6 months… and it seemed to work pretty well up to this point… The true test will come when we go for a visit next week to try and get a good look at the eye in the Dr’s office.  We may even try to get a pressure reading in the office!

Christopher has a GREAT reasoning ability about him.  We’ve worked very hard at helping him to understand that if he will co-operate at the Dr’s office… and let the Dr look at his eye’s really good in the office… then we may not have to go the the Hospital for an EUA.  He understands that if Dr Greenidge can use the machines in the office… he won’t have to go to the hospital!  So… we’ll see if that works or not next week!  I’m really crossing my fingers that it will… Usually, children won’t co-operate like that until they are 5 or 6 at the earliest.  Christopher is 2 1/2.  A few weeks ago when we were there… he DID let Dr Greenidge put drops in his eyes… and allowed Dr Greenidge to touch his eye with the pressure reading machine (the blue light ring machine???… hehe)  It was pretty exciting to thing that we could possibly get a pressure reading in the office!  So, we’re really hoping!

We’ve transitioned from worrying if we CAN control the pressures … to wondering what precautions and life changes we’ll have to adapt going forward, now that Christopher’s pressures seem to be at least a little stabilized.  Will he ever be able to swim?  Play sports?  Could “rough-housing” at school with his friends cause him to go blind in that eye if he gets poked or hit in any way?  Will he ever be able to see well enough to drive?  The good thing is that he seems to see very well currently.  At least with his glasses.

We’ve begun to understand the depth of the situation too… on our lives and lifestyles.  We were both Realtors when this first started.  I have always been on the top of the market… good or bad… and as the market worsened… I still did pretty well.  However, Laura, had to stay home with Christopher… and as the surgeries continued, as the Dr visits mounted up, as the time consuming challenges of Christopher’s disease took me more and more away from productive, working hours, as our insurance premiums continue to skyrocket (there was another increase of $150/quarter this next renewal alone!), as Christopher goes through glasses and prescriptions (NOT covered by insurance) like water……. we’ve repriortized our goals and lifestyles.  Laura is still home… giving Christopher the BEST care he could ever have.  And because of that … he is one of the smartest children I’ve ever known at only 2 1/2!  Really… I’m not just bragging as a proud dad either… he is amazingly gifted and smart!  He can play an entire 7 piece full drumset like he was born on it!  Sings, carries on a full conversation, knows his address already, etc!  Amazing!  I’ve even had to take a “regular” job… because we need the “group” insurance.  No matter how much I make in Real Estate… it goes toward Christopher’s health issues… our insurance sucks… and if we lost even that… we wouldn’t be covered under group health… so we have to keep it at least until insurance will kick in where I work.  We realize that now – we will have to keep group health insurance for the next 20 years or so… no matter what.  So, real estate is out as a “career” for quite some time!  But… that is a decision we welcome in the current market as I’m sure most will understand!  hehe

We visited and toured the Lion’s Club here in Ybor City.  It is home to the largest eye bank in the United States and they are currently finishing up an addition that will house one of the most technologically advanced research facilities – dedicated to research in, among other things, glaucoma!  It has private bedrooms for Researchers to stay in so that they can work on their research at any time and be able to sleep/work as they need to.  It really is a great place!  If you ever get a chance… GO!

We have a new child on the way too!  Which brings great happiness and hope… while at the same time brings horrible fears that he could have the same issues as Christopher!  We realize there is a good chance that this is caused by recessive genes… which could give our next child a 25% chance of having the same thing!  Those odds suck considering…. But, we can’t let it ruin our life… so we are willing to take the chance for now… and we know what to expect… should it happen.  And if it doesn’t… bonus.  Whatever happens… our next child (a boy) will be loved and cherished and appreciated too!  We can’t wait!

I still ask Why? … every day… and I still get no answer’s… except for my own… which I won’t share at this time… but it doesn’t affect me as stongly as it has.  For one thing… we’ve finally seen some great strides after the trab… and Christopher (and us) have enjoyed life a little more normally…

We’ve also realized that no matter how “bad” I feel it has been… there is always something that shows us that things could be worse… a lot worse.  You see… our son has his good health.  He can still see… he can jump… and run… and laugh… and lives pretty much a normal life… even after 29 surgeries and countless dr visits.  We know, personally, of other’s who face far more difficult, unimaginable challenges with their children.  They will be fighting for life itself very soon and we cry… sobbing… every day that it isn’t fair that any child should have to face those types of problems.  We think about them every day… We wish them and thier children nothing but the best…Hope is all we have sometimes… I hope that thier child recovers.  I hope that a cure is there.  I hope that she has a smile on her face every second of every day.  I hope her parents are stong enough to get through it.  I hope that if I have an opportunity to help them… I will and can.  I can say that I have found more courage, strength, and hope… from my son… then I could have ever imagined was even there!  He is the only reason I’ve come this far with his problems… he has the strength… our children ARE our lives and we do everything that is needed… no matter what it is… to make sure they are as happy as they can be.

To our friends C… and E…. – Godspeed… we are thinking of you and your family every single day and we want you to know that you can call on us if you need us… things will probably get really hard and unbearable… and we hope that you have the strength to get through it… and, most of all, we hope for the best news, prognosis, treatment, happiness and comfort for your most precious gift in the world…

chris

Advertisements