"loves them." i answered. "he eats at least one a day"
"well, bananas have a lot of phosphorus in them. until they see him, let him have 2 a day."
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this is a story about bananas and a little something called "special juice". it's about my sweet benjamin and the funky gene {we think} i passed down to him. my heart is heavy with mommy guilt and there is a part of me that hopes telling this story will make me feel better. this takes "he got it from his mama" to a different level". mostly, i want him to know how perfect he is regardless of this little blip and how everything will be just fine. bananas and special juice never hurt anybody.
as a toddler, my parents noticed that my legs were very bowed. beyond the bowed that is considered "cute" and "normal for kids up until age 2". no, i didn't have what doctors like to call "physiologic bowing"....something was wrong. my pediatrician ran several blood tests which ultimately garnered a referral to a pediatric endocrinologist when they realized that my phosphorus level was very low. (phosphorus is an element important for bone formation, amongst other things). my bones were not getting what they needed to grow properly and so, as i began to grow and bear weight on my legs, they bowed. lots of tests and discussion later ~ i started medicine. medicine that came in small pink capsules that i would spend the next 15 years dissolving in water to create "special juice"...a light pink concoction that tastes, from what i can remember, a little bit like stale gatorade. i drank this juice 5 times a day and along with another medication, pumped my body full of phosphorus so that i could grow appropriately. i still follow with a kidney doctor because the thought is that this weird problem causes my kidneys to dump phosphorus when they should soak it up since my blood levels are so low. when i was pregnant with the kids, i took phosphorus replacement once again...this time in adult sized pills. when i was hospitalized for my seizure and my phosphorus levels were very low and this freaked everyone out....in swooped my kidney doc to tell them all it was ok, this was normal for me. at the end of the day, it has really not had a significant impact on my life. we've never really understood why i was born with this issue, where it came from...just that i have it and we dealt with it.
fast forward back to sweet benjamin. both he and emma had their blood tested when they were about 2 months old to check for this problem ~ in both cases, the tests came back normal. we pushed any concern away until ben began to walk and we noticed that his legs, like a lot of kids his age, were bowed. we discussed it with the pediatrician especially given my history and ultimately decided to just keep an eye on it. the bowing improved a little but not enough for me to stop thinking about it....could we have missed something?
benjamin and i visited the pediatric orthopedic surgeon on friday. ben charmed everyone in the office as he waddled to his room....chatting and flirting with everyone to the point that the nurses warned me, "we're going to steal him!". he even had a room full of 5 strapping male orthopedic residents wrapped around his fingers. the attending reviewed his films, did an exam, and watched him walk and then sat down with me and said matter of factly, "something is wrong." he explained to me that his films didn't look just like physiologic bowing to him (ben has more bowing at the ankle than is expected) and that even though the blood tests were normal as a newborn he strongly encouraged we repeat them. we had already been planning on doing this but hearing him say this sent me into overdrive.
we headed to the lab immediately where the flirting continued. i think i knew at that point what we would find but was going through the confirmatory motions. the nurse spread his doughy arm rolls apart and stuck him quickly and collected 5 tubes of blood. he cried at first but decided that it wasn't all that bad and, with the needle in his arm, continued charming the crowd. i emailed the pediatrician from the waiting room to tell her what was going on. i dropped him off at daycare after extra kisses and headed to work, the gears in my head on full speed and a pit in my stomach growing.
at lunch time, i received a call from the pediatricians office. portions of the blood tests were starting to return and sure enough, his phosphorus...like mine....was very low. my heart started to pound and i held back tears....how had i missed this?? she asked that i feed him extra bananas in the coming days because of their phosphorus content which just made me laugh....this kid is obsessed with bananas and i'm constantly telling ryan "we cannot let him have ANOTHER banana!". a few more tests were still processing but ultimately, it looks like he has exactly what i have and will be seeing the pediatric endocrinologist along with the pediatric nephrologist in the coming weeks. i phoned a friend and few emails later may be seeing the endocrinologists, the keepers of the special juice, as early as this friday. sometimes it really pays to be a doctor....and more importantly, to know them. {as a side note, it was that same friend who listened to me cry and offered up the only words that made me feel better that day. to my angst over having given this problem to him....she replied, "if you hadn't given it to him, he wouldn't be here". thank you, julia....you were right and it was just what i needed to hear}
i also emailed my own kidney doctor, who above and beyond being brilliant, has always taken special interest in my case. it's unclear what caused this issue and we've scratched our heads together over the years as we've tried to understand the cause (this is what dorky doctors do). i hit sen on my email explaining that it seemed as if "Martina Murphy disease" may be genetic as Ben appears to have the same thing. literally one minute later my phone was ringing....he was calling to see if i would be a part of a research protocol to have my entire genome sequenced in an effort to identify "rare genetic disorders". i said yes, of course, feeling a little bit like a science project but even more so like we might finally have an answer as to "why"....31 years later. it might help us...and even more, it may help others in the future.
it's a strange story, i admit. and while it was previously just my story....now it seems as if it will be our story, my benjamin and me.
sweet benjamin, i want you to know you are perfect and i love everything about you. we'll face this issue together and while it might be a little annoying, it won't hold you back one bit. we'll hold your hand the whole way through....but something tells me you'll be running & jumping as we go. i love you so and will always be right here for you. love, mommy.
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| showing off at the ortho office |
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| mommy at 28 months.... |
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