*note -- this is more of a both of us blog but since it directly relates to Trio I have posted it here*
Yesterday we went to go see a dermatologist at the request and referral of Trio's pediatrician. She was concerned about the white spots he has all over his body and that it may be vitiligo (or what is most commonly known as "what Michael Jackson had"). It's mainly on the parts of his body that clothes cover with the exception of some around his neck and she just wanted to see if there was a way to head it off. We got and meet with the guy and he is pretty convinced that is what it is. There are ways to hopefully stop it from spreading, so what we are doing now is a topical cream twice a day; it was going to be two but one is hella expensive and he was like “If it is too much you can just use the one” and yeah it's a lot since there is no generic version of it so you have to go with the name brand stuff—and since the doctor said the one would be fine we're going with the one.
He said it would take time so he is going to meet back up with us in six months and we can see how the process is going from there and decide if we can continue that route or have to go with more aggressive forms of treatment. And so now we have another doctor on top of the pediatrician and cardiologist It is as he said, this unlike neurofibromatosis (which they think he has because they think I have it even though I've never been tested) this is a more noticeable thing and it does disfigure. And as we all know kids are cruel so if we can make it to where he doesn't have discolored spots all over his face and gets made fun of. Growing up the way I did I of course don't want him to be bullied nor do I want him to be a bully. I want him to be a nice kid and he is—he is outgoing, friendly, charismatic (most of which he gets from his dad and I was introverted as a kid for the most part) so even if it came to that maybe it wouldn't be a big deal because the kids would already like him.
I'm just so sad for him. I do firmly believe that God (or whatever entity that you pray to and believe in) never gives you more than you can handle. You never really know how strong you have to be until you're in the position and I've had a lot of those and I've managed to make it through almost unscathed. My strength is more inner because I don't want to be one of those people who goes through life broadcasting their battle scars and what they've been through. I mean, if you ask me I will answer honestly, but it's more of a matter of fact manner than anything else. But it just seems that almost every medical anomaly one can get he has. Pyloric stenosis happens in every 4/1000 baby (usually a first born male but still) and he had it. VSD or any heart murmur is more common but what is not is it not eventually growing together or getting smaller as the months progress. His didn't which is why he had open heart surgery at four months to repair it.
Then there was the MRI we had to get done at two years because of the neurofibromatosis which is pretty much a benign genetic disorder that results in cafe au lait spots all over the body (which we both have) and moles (which I have) and there is something that can show up in the eyes. The doctor yesterday mentioned in some cases there can be issues with growths in your face and also gastrointestinal issues (which can sometimes result in needing a colonscopy before the recommended age which is what I need I just have to fight to get it covered on my insurance). The results there were inconclusive but based on what he has it leans towards he does have it. He has bad teeth, which is no biggie as long as we are diligent with his brushing he should be good. And now this. It is frustrating because I feel like the road has already been so hard for him with all the stuff that happened when he was just a baby and now there is concern over this skin disorder.
As my sister said “He's fine – it's not bothering him and it doesn't affect how he is.” And I do believe that since he is so friendly that if it gets to that really visible level he'll have friends who have his back who are like “No he's cool, you're a jerk, don't make fun of my friend or I'll kick your butt!” And while it is a little disheartening to have to be concerned about this it boils down to this (which is one of favorite sayings lately)--”Suck it up buttercup.” So I'm going to put my war face on and I'm going to do what I need to do to combat this and hopefully make it not an issue. Use the power of positive thinking to see the goal and press on because that's what needs to be done. And at the end of the day, with everything that he has been through and may go through, I know that my son, like me, will be a fighter. And that is reassuring to know that he has the mentality for whatever life will throw at him and that he will fight, and knowing my son, it will be with a smile
