my big has a genetic disorder that is highly variable. it is also considered progressive. so i would like to start this post by saying, at this point, she is extremely mild. matter of fact, overall, she's a pretty typical 4-1/2 year old. nothing about her would stand out to the common onlooker.
we are thankful for this. we know quite a few others who are dealing with much bigger. much scarier. and who's variable has landed them on the more severe end of the spectrum. i do not take lightly that we are dealing with very little as far as nf goes.
that being said, i thought i would share our mri results. it's taken me a few days to process all of this, and really wrap my head around what i'm feeling.
big had her mri on tuesday. she rocked it. no really. she was so great the whole time. completely unphased by all going on, despite the fact that she does not remember the last one that took place two years ago. she woke up asking for french fries. when one has to be put to sleep, run through a machine, and has a picture taken of their brain, they get french fries. judge all you want.
and like always, despite the being told that results would come in two to three days, i called the next morning to hear them as soon as possible. great news. no brain tumors. not as great news, her mri was abnormal. she's fine. nothing huge. nothings scary. just an abnormality that is common in nf.
so here's where i may start to sound a little dramatic. forgive me. i'm just trying to learn to deal with a disorder that can be quite mean. two years ago in april, our big had her last mri. we had hoped to not have to do any again, ever. more realistically though, at least five years. some people do them annually even if their kids have nothing going on. we aren't into that. especially since her masto puts her at a much higher risk for an anaphylactic reaction to sedation. anyway, her last mri, clean. beautiful. everything inside looked as it should.
this mri. she had what are known as ubo's (unidentified bright objects) on her brain. they are mostly harmless. they have been linked to lower i.q.'s, learning disabilities, and behavioral issues common with nf (adhd). somewhere around 70% of people with nf have them. our daughter has them now. and this means, her nf is progressing.
it's a progressive disorder. it's unpredictable, and what she has going on now means nothing about what she will have going on in a year. but, i have to assume that most parents feels this way a little bit, we had hoped abigail's wouldn't progress.
i know. that sounds ridiculous. so now we are sitting here trying to calm ourselves back down and remember to be thankful for the day today. today, we do not think she has any tumors. and that's where we need to live. but those stupid ubo's. they're there. and they are another reminder that she has this stupid disorder, and that is gets worse over time. and whether big things, or small things, it will affect our daughter.
and so, i guess i will continue to sound dramatic for the time being, as i accept that we are going to continue to see things come up as a result of nf.