Wednesday, September 25, 2013


I feel like my remote isn't working.

Like I'm hitting the pause button and it just isn't responding.

Ray and I talked a lot in the last week about how if Millie's latest tests were showing no worsening (and hopefully improving) conditions, we were going to be adamant about just taking a break. To stop all these tests and the doctor visits for about six months (or longer), to just allow Millie to work, to focus, to hopefully develop at her own pace.

(We would obviously continue her therapies but stop all these ongoing tests and trips to the Cities for medical appointments.)

As we hoped, and expected, her MRI was OK. No new development, no worsening. No signs of a nerve disorder.


So I was all prepared to say that we've decided to just let her be for a while now.

Then I remembered that they had also ultrasound-ed her kidneys to check on her perceived pelviectasis (one area of her kidneys is larger than normal).

As it turned out, the pelviectasis was not noted in the imaging report, but her kidneys have not grown at all in six months.

So we have been referred to a pediatric nephrologist.


Honestly, I'm not entirely sold on the necessity of it yet. I mean, she's 2 years old, how much could her kidneys have been expected to grow in six months?

But her kidney sizes - 5.7 cm and 5.5 cm - put her below the 5th percentile for her age, so I'm thinking it may also be better to err on the side of caution.


That would mean another Cities trip, another specialist, another run-down of her medical history, etc., etc., etc.

Still, while I'm a little confused about the kidney specialist, I am taking the test results, visit, overall as good news.

Here's a rundown of what we learned:

MRI: Pretty darned good. Nothing new to worry about. The myelination is not increased but it hasn't decreased, so yay!

Eye drop thing: Unresolved. Will just watch. It was not a nerve disorder, so yay!

Falling down: Millie has in the last few weeks randomly began falling. It's almost as if her legs just give out. Because it could be seizure activity, we are going to track, record and monitor those for the next month to measure their frequency and if that begins changing. We will report back.

Next visit: Will see the neurologist again in six months for a regular ol' checkup, unless new concerns arise or if the falling down thing is getting problematic and concerning.

As for the pediatric nephrologist, I was provided a list of specialists in the Twin Cities. We can either go through the U of M or Children's.

As always, there was a lot of information provided and Ray and I need to come to a consensus about what we think is best.

I think my first step, though, will be contacting our geneticist. She is actually the one who ordered the original renal ultrasound in March, after we learned of Millie's genetic makeup. It was ordered mostly as a precaution, but then found the pelviectasis. Since our neurologist is not a kidney specialist, I'm wondering if maybe the geneticist could shed some light on the necessity of seeing a nephrologist.

So that's where we are at: pleased overall but also sifting through new medical terminology.

As always, thank you for checking on us.

More so, though, thank you for the positive thoughts and prayers for Millie and our family. We appreciate it very much.

- Bethany :)

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