Back from my looonnnnggg break!

Ok… so I haven’t responded to a single post and I haven’t posted anything since the beginning of the year.

I am sorry on both counts.  Very selfish of me.  My excuse is a valid one… but I won’t get into it here.  Just know that life has been very tough this year… so I’m VERY VERY sorry for not responding.

That being said… I WILL post regularly and respond to any of your posts.  We (my wife and I) do have a good amount of real life experiences when it comes to all things eyes… so I’d love to help if I can.

Now… here is what has happend with Christopher’s eyes:

He is now letting Dr Greenidge check his pressures IN THE OFFICE!  The kid is 3 yrs old and sits in the chair… gets his cold, numbing eye drop, sits on his knees, sticks his chin in the machine, looks at the blue light, Dr Greenidge opens his eye just slightly, the probe touches his eye and registers a perfect pressure reading!  Then he does it with the other eye!  Can you believe that?!  3 years old!  No more visits to the Hospital to get a damn pressure reading… no more EUA’s just to see where the pressures are!  We even got some really good pictures of his optic nerve 2 visits ago!  We’ve been working all year to get Christopher to do this… it wasn’t easy… but with the Dr’s help, my encouragement, and my son’s fear of the hospital… we’ve got him doing it perfectly!  (*He gets ANYTHING he wants when he does this and that helps too!  lol… he got to buy 2 toys last time a dinosaur and a robot, plus he got a candy necklace, and a trip to the park!)  All worth it to avoid the hospital trip … just to check the pressures!

His pressures are about 18 in both eyes.  We have been on Travatan for the past 6 weeks … one drop in the right eye … every other day.  No drops in the left eye.  Pressures have remained pretty stable for now.  We see the Dr again in 3 months!  That is a lifetime without a Dr visit!  Whew!  We’ll take it!

We moved over to St Petersburg to be closer to the Dr and the Hospital… and we don’t have to go near as much (if at all to the hospital now)… just our luck!  lol  We’ll take that too for now!

Our 2nd son, Kevin (after Dr. Kevin Greenidge… of course), seems to have no problems with glaucoma as far as we can tell.  Dr Greenidge has seen him twice and there aren’t any problems he can see.  We are hoping this stays this way!

Life… as far as glaucoma, Christopher, Kevin, and all things “eyes”… is good.

One last VERY EXCITING thing has happened to us this past few weeks:

We go “garage sale’ing” every weekend.  2 weekend’s ago we were out and it wasn’t going too well (we couldn’t find any good deals and we were hot, etc.).  On top of everything else… Christopher had to go potty… “really bad.”  So, we drove aimlessly around the part of town we were in – where we knew nothing!  We almost pulled into a CVS, but decided on a Walgreens on the other side of the road.  After using the bathroom we went to the toy section (THIS WAS THE DAY OF OUR LAST DR VISIT AND CHRISTOPHER WAS DUE HIS 2 TOYS – THE DINOSAUR AND THE ROBOT!) and we were negotiating on some of the different “options”, if you will.  After a couple of minute of this a woman came around the corner and was watching us and laughing (she had heard us from the next aisle and was laughing at us.)  To make a long story short:  She is a Vision Specialist with Hillsborough County School District!  My wife and I are both in the process of becoming teachers, and my wife has wanted, for some time now, to work with visually impaired children.  We started talking and before the day ended… my wife had the number to a lady who ran a bachelor’s program through FSU that has a satellite campus here in St Petersburg… and my wife is on a new “track” to become a Visual Specialist educator.  Here’s the kicker – apparently there is such a need for this specialty in the schools… 1/2 of the tuition is paid for!  Amazing!  I don’t think I can get across how HUGE this is for us.  It is EXACTLY what my wife wants to do.  It has been a dream of her’s for sometime, but we didn’t have any idea how she could do this particular profession… nor did we know that it existed!  And to find out we can get 1/2 of her tuition paid for… is icing on the cake!

Anyway, life is pretty good … as far as the eyes go.  Life, on the other hand is … tough.

Until next time!

Christopher’s Dad

 

A New Year!

Wow… It HAS been a terrible long time since I’ve written.  I am very sorry!

Most would probably think that it is due to the fact that things are going well, for Christopher… but it isn’t.  It is actually due to personal circumstances and “life.”  But, THAT, is another blog… one that I really haven’t started just yet… hehe.

Ok… So, I found out from my wife that my mother, and quite possibly, my whole family, NOW know about my blog.  I guess she let it slip that I “write well on his blog” around my mother.  Discretely, my mom pressed her for the blog.  I’ve heard from my wife now, that she HAS read this… I’m a little embarrassed b/c I know that some of the things I say here may be hard to take from my family.  It has been a real battle and we’ve shared it with them… but, of course, we have hid our most innermost feelings from them.  Mostly, out of the need to anguish and “hurt” privately… but now that my story is “out” among my family and friends… Welcome!

I guess that when I started this blog, I was in a different place than I am today, emotionally speaking.  If I’ve upset anyone who didn’t “know” that I was writing this; if I’ve said anything in this blog that offends; if I’ve NOT said something here that someone else feels I should have said… I’m sorry.  I started this as a sort of “diary” that was open to people who would seek out others with the same problems we were facing – a child who has congenital glaucoma - and wanted to empathize or needed to feel like they weren’t alone.  A few people HAVE found us that way… and we’ve developed some simple, anonymous, helpful bonds and I hope that we’ve helped them through some of their toughest times… they now know that others have gone through the same EMOTIONAL tormoil they have.

Now… An update since the last time I wrote!

Christopher is doing AMAZINGLY well at this point.  As far as his eyes are concerned – they SEEM to be fine.  We still have not been to the hospital and we hope NOT to go back… at least for his “glaucoma.”  We know we will… at some point… but for now Dr Greenidge seems to believe that his pressures are still at an acceptable level.  Yah!  We’ve been trying to get pressure readings in the office on the regual pressure machine at each visit.  Christopher did very well the first time… but the last 2 times haven’t been that great.  I have a feeling that unless Christopher allows him to get a really good pressure reading the next time… we will be headed back to the operating room.  We see him again in a few weeks.

Dr Homsy – Christopher’s other eye doctor – She works with his visual acuity, glasses, amblyopia (lazy eye) etc – has said that she will probably be doing a “muscle tightening” surgery soon to straighten his left eye.  We’ve been patching about 70% pretty consistently for a year now… and his lazy eye doesn’t seem to be getting much better.  That sucks… but it is a helluva lot easier to deal with than anything we’ve had before.  So, I guess we’ll be heading back to surgery soon again ( a few months.)

While we were at our last appointment with Dr Greenidge, we asked him about getting our soon to be new son in for him to look at, after he is born.  Do we need to bring him in?  If so, how soon?  He resonded with a definite YES… (We need to bring him in.) and we need to get him in ASAP!  I asked “In the first week or so?”  and he responded with a “In the first couple of days!”  Wow!  I just didn’t really think it would be that pressing… but I guess it is.  That concerns Laura and I quite a bit right now… but we are staying optimistic.  We know there is a chance that “Kevin” (Our soon to be born son’s name) could have the same thing – congenital glaucoma – but we were just a little shocked that he wants to see him so quickly!  It is sitting in the back of our minds constantly.  We’ll wait and see.  Hopefully, everything will be alright.

Laura is back in school - full time – finishing her degree… She is going to be a teacher!I have been trying to get my teaching certificate too… I should have a full fledged teaching certificate by the start of next school year.  Real estate has been challenging… but we’ve survived.  We “eek” by… for now… that is good!  We realize that life is tough… but that there is hope.  Emotionally, we’ve been through the ringer.  Physically, we are worn down.  Financially, we are broken.  Spiritually – empty.  But – there is hope.  Finally.  2 and a 1/2 years ago we were on top of the world… The economy was peaking… We were peaking… Our life was GRAND.  Now… we are broke, broken, beaten up in many ways… but we are happier than we’ve ever been.  Our family has grown closer than any other family that I know… because we have had to deal with a LOT at the same time.  We KNOW that there are better times to come for us… Christopher is loved more than I ever dreamed possible.  Our family is growing.  We have no place to go but UP!

We love you Christopher… You are a special child! 

I’ll keep you all posted on his condition!

Chris

 

6 months later…

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

 

Hope

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

 

Dr Visit… Bad News

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?

 

Sick, Tired, and a Birthday Party

Whew… More exhaustion!  Yesterday, Saturday, Christopher woke up with the Croup!  Yikes!  This is, unfortunately, the third time he has had it in about a year.  He really doesn’t get sick much… and when he does, it isn’t that bad.  But the croup always makes him sound soooo bad. 

Last night, we all got dressed, got our keys and wallets, and started out the door.  That was about the time Christopher’s episode of coughing and stidor calmed down.  So, instead of going to the emergency room (Last time he had to have a steroid breathing treatment) for the 2nd time this week (see one of my previous posts), we decided to call the on call nurse at our doctor’s office.  She gave us some pretty good advice for dealing with the croup.

First, it is horrible at night.  It kicks up a notch.  If it gets bad… we should take him into a hot, steamy bathroom for 20 minutes.  The moisture in the air should help the cough.  2nd, if he has more than 2 episodes of “stridor” within a 24 hour period… we need to go to the hospital or doctor right away.  Stridor is when he is breathing in – there is a high pitched wheezing sound.  3rd, a cool mist humidifier is imperative.  4th, she said we should sleep in the same room with him while he has it because croup can turn ugly really quick.  And last, if he was having difficulty breathing to the point where his belly and rib cage were “sucking in” … we should go immediately to the doctor or the hospital.  All good info!

Well, he was souding really bad… but his stridor episode subsided after the steamy bath, breathing treatment (we already knew that and had already given him the treatment by the way) so, we felt comfortable with not going to the emergency room.  I wound up sleeping in his bed with him the rest of the night.  I didn’t get much sleep at all… because I was so worried about him.  He also had a pretty good fever going on and it finally broke after his tylenol dose at 4am.  So, I finally started to sleep around 4:30am and we woke at about 9am.

Cosopt has a lot of contraindications and one of them is respiratory problems.  We aren’t supposed to be giving him those drops is he is wheezing.  So, on top of all the worry we go through… even a simple, common illness… raises our blood pressure even more!  We used the Trusopt, which is a better alternative if he has the upper respiratory problems.

Then, my sister had a birthday party today for her 2 sons.  Yah!  Normally, we would have probably skipped it… but my other sister used this gathering as a time to get some long over due, extended family pictures done.  Everyone was coming – my brother and his family from out of town, my 2 sisters and their families, my mom and dad, and my family.  We were all even wearing different color co-ordinated clothes… it was kinda a big deal…. so I had to go.  Ugh.  And yeah… the person was there that caused the episode a couple days ago.  Not much was said between the two of us.  Just some quick, cordial greetings and that was it.  Whatever.  I don’t think most people will ever understand what we go through.  I am realizing that the strength I need will only be found within myself.  I just don’t know if I’m ready to pull up that strength.  I just think that it will mean that something else will have to give.  Maybe… compassion, endurance, honesty….. something.  I’m kinda scared of that.  I guess I’ll have to deal with it eventually, but that is another post.

Christopher was sick, tired, and extremely needy and grumpy.  I was tired and grumpy.  My wife was just trying to get through it without getting mad at me for being so cranky… it was a mess.  Somehow, we made it.  But I had to leave at 2 to get Christopher into the bed for a nap.  He is a horrible mess if he doesn’t get a nap.

So, here I sit, relaxing… thinking about life, Christopher, my wife, what lies ahead… I’m still just trying to wrap my head around the fact that he’s going to have to have implants… even after 19 visits to the hospital.  Just doesn’t make sense to me.  I should be extra depressed today… but… for some reason… I’m just tired of being depressed and upset all the time… so, on a day like today… with all that we have going on… and the added stress of Christopher being sick and all of us tired… late naps… crankiness… I’m feeling a bit calm.  Weird.  I’ll take it though… I need it!

 

Thanks for the support!

I just wanted to take a second to say “Thanks so much!” for the emails of support that we’ve received since starting this blog.  I don’t know how so many people have read it so quickly… but our story has touched some of you too.  I thank you for the stories of encouragement and hope; for explaining, compassionately that “you’ve been there”; for letting us know that there is someone out there that goes through what we go through.

This nightmare is so rare… there just aren’t many people (especially – locally) who can relate, empathize, or even come close to understanding what this all entails… It is so hard to share – even with our close friends and family.  And it is even harder to ‘bear’ alone.

So… Thanks again.

I would like to share snippets of the emails I received (I hope you don’t mind)… but I will, of course, honor the privacy of the person’s who sent it.  I will not allow the names included in the emails to be put here.  I just think they are worth sharing.  Maybe, someone else out there is having some of the same trials and tribulations… and it would be nice to see the warmth and understanding the rest of us have for each of us going through this.  So… here are a couple of snippets from the responses I received:

“I can’t tell you how much your story relates to ours.  As I read your blog, all the emotions and frustrations that my husband and I have experienced with our son came flooding back, and I couldn’t help but sit and read and cry along with you.  Glaucoma is such a horrible sentence, and I suppose someone else would say there is alot worse things that our children could have.  All I know is what we deal with daily, but I just wanted to give you an update on my son, in the hopes that it may give you and your wife some hope as well.  …We were given the same option, Valve implants.  Nothing else had worked and (after) 11 surgeries his pressures were still high.  Round the clock drops and patching were our life.  At 18 mos. our doctor decided implants would be our best bet.  We were crushed.  I could not bear the thought of anything foreign in my child’s eye.  But, I am here today, 9 years later, telling you that the implants have been a blessing.  We saw instant results.  We still have to maintain a drop regimen, but all in all the implants by far have been the best thing that could have happened to our son.  I wish we had chose them right from the start…  Again,  I just wanted to write you and your wife to let you know that there is hope.  Eventually, you will settle into a routine of acceptance, this is not to say that you won’t have worries and concerns, but life will get easier.”

And another wrote:

“Wow, I just read your blogs.  It’s amazing how we can all relate to the same things. My daughter is 5 now, and was diagnosed at 13 months, but was born with the disease. She lived with extremely high pressure, migraines and cloudy corneas for 13 months…she saw my face for the first time 2 days after her first surgery.  I’ve heard from so many people the same line….God only gives you as much as you can handle..I also believe its a load!!!  …   I don’t know how God thought I (can handle all that has happened…) but I did, and I have, for the past 4 years of surgeries and endless eye drops, glasses, patches….its a never ending battle with this disease.  I used to be depressed and sad all the time…I’m 24 years old!!! I’m not supposed to be depressed!!! But I’ve met so many people that I can relate to…who have the same worries I have..who go through the same daily struggles!  …   I hope your son does well. I read about the valves in your blog. They’re not as bad as they seem. It helped my daughter out so much. Her pressures havent been over 17-18 since she’s had them in. I’m amazed!”

Well… Once again, “Thank you…”  It most definitely helps to hear from all of you.  We are still extremely depressed… and we cry often… But it is really great to hear encouraging stories from others who have been there!  Good luck… to all of you too!  We will keep you all in our thoughts!

Chris

 

Who are you asking your questions to?

That is a tough question. I was speaking to someone really close to me recently. They caught me at a bad moment and asked me “How was I handling things?” Specifically, Christopher’s glaucoma issues. That turned into a very heartfelt, emotional “spilling of the beans”, if you will, of how crappy… emotionally… my wife and I are right now. My very close – person – asked me early on, “Why (there is that nightmare of a word I abhor) did I think I was at the point in my life?” She was referring to a Higher Power… She wanted me to answer something along the lines of “Because I’m not going to church”… or ” I’m not following God’s will” right now… or something to that affect. This person, you see, believes that everything in life is fixed by God… or is lost as a result of not “following” or “believing in” or “not being true to” God. And that is great. For that person. They can believe that all they want.

I ignored the first allusion to God… and, hoping that person would offer some sort of encouragement – that came from their heart and didn’t include a reference to God – of their own… kept spilling my heart. They kept asking me questions of concern (and let me tell you up front… they truly are a concerned person. They love me and my wife … and, of course, Christopher… and want the best for us.) and prompting me to “share” my turmoils with them… so I kept on letting them know how low I have been recently (just read the posts… and you’ll know!)

Then, that person pushed me across the line and I said something that I wish I hadn’t to them. Mainly, out of respect for their beliefs. I was explaining what we go through every day… the constant battle with patching, eye drops that make my son’s eyes sting for 5 minutes after each one… twice a day… the constant trips to the Surgeon’s office and the hospital. The worry – constantly – over things that can increase the pressure in the eyes… Basically, the torture that we HAVE to put our son through – all day – every day… with no sense of “closure” or even a sense of security that it will all be ok in the end… and I told them that I – myself – am tortured, mentally, with the question of “Why?” every day… that I ask it all day… every day… all night… dream about it… wake up to it… and can’t seem to stop seeing and hearing the question… WHY?….

It was at that moment… that this person asked me the wrong question at the wrong time… “Well, who are you asking the question too?” I repeated it back to her… “Who am I asking the question too?”… “What do you mean… Who am I asking the question too?” I knew good and well who they were referring too… I just wanted them to say it… Silence…

At that moment I toyed with the idea of playing along and ignoring it… letting it go… But I just couldn’t! I am 20 months into this mess… and it has weighed heavy on me since day one… and the burden has gotten heavier since then. It seem insurmountable at times.

“Why don’t you just say who you mean! Why don’ t you stop dancing around ‘who’ you think I should be asking the question too!” I barked! “You want me to say ‘God’ … You want to know if I’ve asked God ‘Why?’”

“Well… I’ve asked God… Why have you let my son get this terrible disease?”

“Why have you allowed this torture to go on with me… (and others) and my son?”

“Why … Why… Why…….”

“And I don’t hear anything when I ask….”

“Why don’t YOU ask him for me and let me know what he says!” I cried into the phone.

The fact of the matter is… God or no God… my son has this condition. I don’t know why? If there is a God… then he should know why! And the common thought is – amongst “God fearing Christians” is that There is a God… AND … That God is omniscient & omnipotent (all knowing and all powerful). If there truly were a God… and I would have NO problems believing there is… Why (there’s that damning question again!) doesn’t he just “heal” Christopher’s (and all of the other) congenital glaucoma cases in the world right now? If that happened… We would all go out and “Proclaim” the good news and there would be so many conversions it would replace the “Clinton v. Barrack” spectacle in the news!

Yeah… yeah… faith… my faith is just about tapped out. Sorry… but it is. I’m no “Job” … I can’t just keep believing “blindly” that all is well that ends well…

But one comment from that entire conversation keeps sticking out in my mind…

“Who are you asking your questions to?”

 

Emergency Room Visit!

Yesterday was quite a day.  Whew!  I’m sitting in my office working my butt off… focused… finally getting some motivation after a few weeks of being down…. when I get a call… It’s my wife… She is on the way to the hospital – in an ambulance!  Christopher fell at the playground while climbing a ladder, hit his head and passed out!

That is about all I heard as I hung up the phone and sped to the hospital.  I beat the ambulance there and the park where Christopher got hurt was only about about 75 yeard away from the hospital!  As he was pulled off of the hospital – strapped to a gurney, in a head brace, tied up so he couldn’t move… I heard him screaming and crying.  Broke my heart.  I held his hand every step of the way into the emergency room, as they checked him, did his x-rays, cat scan…. “Is his neck ok? Is he ok? Is his head ok? Is his brain ok?”  It was one of the most intense 2 hours I’ve ever experienced.  In the end he was ok from the fall.

But is he?  You see… we battle this damn disease every second of every day with him.  His eye pressure go up and it hurts his optic nerve.  A rise in blood pressure will raise the pressure in his eyes.  So, what sort of trauma was done to his eyes because of this common fall that happens every day?  It hurt my heart to see him lying there… and in the back of my mind… I’m worried about him screaming because they won’t get him out of the neck brace that is causing him to be so upset… and I’m thinking the whole time… his pressures must be through the roof!  “Can you turn the light off or down?” I beg… finally, they do.  One lady is screaming at the top of her voice at him, trying to calm Christopher down… “Get away from him and stop yelling in his face!” I tell her… she backs off.  “Shhhh… I know… I know… baby” I console him over and over for about 30 minutes, until, finally, they determine they can take the neck brace off.

You would think that dealing with this disease gets easier with time… that we could get it out of our heads at least at during the most intense times… but even during the emergencies… it is apparent… that it will consume my thoughts!

WHY?

 

Easter Egg Hunt!

We took Christopher to an Easter Egg hunt today! About 200 to 300 kids were there and it was a blast. We sat at the rope line waiting patiently for the hunt to begin… Christopher had is patch on and he doesn’t see so well … at all… with his left eye. Since, there were another 100 kids in his age group grabbing for eggs… we decided that part of his 30% without a patch on today was going to be the hunt. We just wanted him to have some fun and get some eggs!

Worked out ok. He had a BLAST! He even rode the Choo Choo Train later and bounced in the Bouncy Tent Thingie!

The rest of the day pretty much sucked for him… as it usually does. He kept his patch on a little better today than usual… But at one point this evening… I was sitting on the floor in front of the couch and he was “climbing” up me and onto the couch. He misjudged the couch edge and stuck his hand out to brace himself… laughing that genuine 2 year old laugh that says “I’m having the time of my life right this moment!”… and missed the edge! He fell right on his head and his neck twisted. I’m sure he will be sore in his neck for a couple of days. It hurt him and he cried for about 30 minutes. Just another side effect of this damn disease!

I hate it. Why does he have to have it? Why does he have to get hurt when we force him to wear a patch to make him better? F#$%^^G sucks! It took me down instantly. But, then again, if you read my blog… you know that isn’t hard to do these days.