heres a bit of milo’s update since my last report after his recent procedures. milo is definitely doing better. he still has his good/bad days and we haven’t yet had a day where he hasn’t complained about his eyes. we actually went back to his glaucoma doctor last week to check on his good eye (right eye) because it was tearing a lot and it was still swollen. it really shouldn’t be tearing since he had an eyelid epiblepharon to eliminate this problem. it turned out that he might have caught an infection from the procedure so we were given an antibiotic eye drop to give him for both his eyes 3 times a day for one week. and aside from the tearing he has been super sensitive to lights which he has never been. we were always asked if he is sensitive to lights due to his glaucoma but it was never a problem until now. the doctor really didn’t know the reason and couldn’t tell us much since it was a battle to get milo to have his eyes open at the doctor’s visit. we just have to keep an eye on his eyes and if anything, he would need another EUA for further exam.
the antibiotic eye drop is working very well. his right eye is no longer red and the tearing has gone down drastically. BUT he is still light sensitive. we pretty much have the blinds in the house closed when its uber sunny. when we go outside with him he closes his eyes until we are indoor. milo’s ECE teacher gave us a pair of sunglasses to put over his glasses and they help especially when we are in the car.
and here comes another whole new thing on top of all this drama with milo since his first prosthesis fitting back in april. with all these new recent activities and trauma, milo likes to cry all the time about everything and gets upset pretty quickly and often. it usually starts with him complaining about his eyes hurting and from that point on, its all about him not liking this and that and all he wants to do is go to sleep. its a constant battle. we cant tell anymore if he is trained to cry so he can get what he wants (because thats what we did when he first had the horrible experience with his prosthesis to get him to calm down) or if he is really hurting. we know that there are times that he IS in discomfort/pain but sometimes he can shut it off so quickly that it makes you wonder. i feel torn at times because i want to give him credit for all the crap he has been through with his eyes his whole life, but at the same time, i cant have him acting up and using his eyes as an excuse. it is a very fine line. SO, we are still educating him about his eyes and all that is going on and what he can do to help his prosthesis to feel better (i.e. – blinking his eyes when he wakes up so that it wont feel as dry or i like to use the phrase – you got to blink your eyes to wake up your shell.). we are being even more patient with him especially when it comes to his eye drops because we want him to be in a good mood so that he realizes that they are not horrible. i got him to believe that eye drops feel like a tickle to your eyeballs. we talk about his various emotions and making sure that he knows we acknowledge them and kind of talk it out with him every step of the way. unfortunately with milo, we are always making good progress on his milestone (i.e. sleeping habit, eating habit) but then we always have to start all over because of a bad doctor’s visit or some eye changing event. its hard. for him and for us. we want to just give in and say yes to everything but at the same time we want milo to learn to grow with his eye conditions as a regular thing since he has a whole life of eye events.
if anyone out there wants more details on how to do eyedrops on your kid, please feel free to ask me because i can share my tricks with you.