let's talk about crohn's baby

every three months taylor, ethan and i, make this journey to salt lake to visit dr. g at primary children's hospital. dr. g is taylor's crohn's specialist and we are so lucky to have him because he is super fantastic: friendly, personable, thorough, creative and really really smart. all the things you want in a dr. right? i chickened out on getting a photo of him with taylor, next time i'll be more courageous.

taylor decided it was time do a little documenting about crohn's disease, up until now only a small circle of friends and family really know that he has it. it's not really a secret per say, just something he wasn't keen on advertising on the world wide web. in fact, i've never taken photographs of any of our appointments or tests or anything to do with this, sort of taylor's wish although he never really asked me not to. who can blame him really? so then why now you ask? well this well-check of taylor's today, marked four years since his diagnosis and he, and me, have come a long way since that hard hard day. it's a celebration of sorts.

what is crohn's disease you ask? the short version of the answer is that it's an auto-immune disease. this means that your body has an immune system malfunction for a reason the scientists don't really know yet. it malfunctions in a way that it thinks your body is the enemy and begins to attack various things. in taylor's case, his intestines. he began complaining of belly problems, and whole host of potty symptoms that we won't get into that prompted us to head to the pediatritian post haste! poor taylor endured a lot of tests, he is really such a trooper to be so cheery after all they put him through. finally, a colonoscopy revealed the affected areas and he was finally diagnosed with crohn's disease.

basically, treatment is an immune supressant to help call off the "immune dogs" that are attacking his body. this has worked like a charm against the crohn's disease, but it also means he is prone to all the things we want our immune systems to fight off. it takes taylor a long time to get well, even just a common cold, and so we've turned into germ freaks around here. ok, ok, worse germ freaks that we already were, and when i see "we", of course, i mean "me". i'm trying really hard NOT to share my germ anxiety with taylor but that's sometimes hard to do. so far so good, he's been able to avoid being sick very often. and as far as the crohn's disease itself, in four years, taylor has only had one bad flare up, which is almost unheard of in the crohn's world. he have been very blessed to stay in a medicine enduced remission almost the entire time.

because the medicine can cause really scary side effects, taylor is monitored all the time. so every three months, we make this drive, get a check from from dr. g. and then taylor gives them a whole lot of blood for studying. but we don't mind. taylor is tough and has been through worse tests. once he had to drink barrium to get an x-ray of his upper gi. he informed me later that it tasted like elmers's glue only thicker and with baby powder it in. ehhh. but that's another story for another day.

the point if this long long post is to say how much more positive our outlook of this disease is. originally, it felt a little like someone was taking away the dreams i had for my son, like being healthy. not a death sentence, but a miserable sickly life sentence if that makes any sense. four years later, we understand that it's not what it used to be and taylor really does have a very good chance of living out a normal life. he's proved it over the last four years, he can be healthy! he is healthy! in fact, he'll be healthier than the rest of us because preservatives seem to upset his stomach in a way that makes eating them not worth the grief. so while the rest of us are eating twinkies....just kidding, we really don't eat twinkies, but you get my point. the outlook for crohn's patients even ten years ago was not great at all, we are so grateful for skilled doctors and medicine and research that has helped taylor stay well.

everything at taylor's check up today was routine, and then we were invited to participate in a dna study for crohn's disease. it involved taylor giving a little extra blood to what he was already giving and i had to get my blood drawn too. taylor said since i took his photo while he was getting his blood drawn, it was only fair that i had to have mine taken too. smart kid. i hate needles. but then, who loves them? it's worth it though, if they can study our blood and help kids, even taylor's kids, in the future. if you made it to the end of this post, then you really must love us. if you're interested in reading more about crohn's disease, try this website, i've read it about three thousand times myself. ok, not that many.