Friday, March 29, 2013

at the risk of sounding dramatic.

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.


  1. I'm sorry. i know it shakes you to the core when you first hear abnormal MRI. Even if its not that bad, it still reminds you that your kiddo isn't as normal as you would like them to be. When Ike turned 2 were given the option each year of continuing with MRIs or switching over to eye exams 3x a year with midwest. We were doing the MRIs until Ike's MRI showed UBOs right a few months his 3rd birthday. We were again told that we could quit the MRIs anytime because if a optic glioma was going to show, they would be able see the start of it by then. I decided I could make myself crazy over the UBOs and wondering how the changed every year, or I could accept that this is normal. This is his normal. Its the same as more freckling showing up or more CALs showing up in the summer sun. With that acceptance, we decided to stop the MRIs and only do them if he showed neurological change and just do the 3x a year eye exams with midwest. For the most part I have felt really good about this decision. I had one freakout when he complained his eye hurt and Midwest couldn't get us in for a month, but it turned out to be nothing more eye allergies. But in the big scheme of things, I think only one freakout in 18 months pretty good. :) When I had the freakout and we were waiting for the eye exam, I did regret stopping the MRIs, but after the eye exam showed that everything was ok I was fine with our choice again. Its such a roller coaster of emotions, isn't it?


  2. All 5 of my kids have UBOs. I never thought anything of it as I was told its kind of like CALs on the brain. Guess they were wrong, huh? Thank you for the info.