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.

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