Six Month MRI

Last Thursday was our big trip into Children's Floating Hospital for Owen's six-month MRI.  In the days leading up to the appointment, I was very anxious and incredibly distracted.  For anyone who I interacted with during that time, I apologize.  I have no idea what we talked about because my mind was only focused on one thing.  Has it progressed?

Sadly, it has. Thursday morning started for me at 2am when I woke up to Owen screaming his high-pitched neuro cry.  He has been doing that a lot again lately and I got up to help Pete out.  Owen screamed in my arms from 2am until 5am when he finally fell asleep.  It is so difficult to watch your child in such distress.

In general, it just wasn't a great morning.  We hit traffic heading into Boston and were 20 minutes late for our appointment, an MRI machine was broken and Owen was about an hour and a half late getting into the machine, and he pulled out his IV while waiting for his turn.  After the MRI was completed, Owen had more blood drawn and also another lumbar puncture while sedated.  Then we met with his geneticist who did an exam on Owen.  She suggested a new test to run on Owen for a fairly common genetic disorder.  Many of the markers for it sound like Owen and we will be awaiting those results some time in June.

Owen's chromosomal tests have come back completely normal, all of his mitochondrial tests are normal, and we are just waiting on the result of the variant-Rhetts test which should be arriving any day now.  The most significant portion of the day was reviewing Owen's MRI with his neurologist.  We were able to look at the images taken in November and December of 2011 and compare them to the current MRI.  The progression of the disease of the white matter of his brain was obvious to our untrained eyes.

We feel satisfied with the appointment.  It wasn't wonderful news, but it was confirmation that we are on the right path with Owen.  We are doing everything we can to keep him comfortable and happy.  Loving him every day and trying to enjoy each moment with him.