We are kicking off some of our new medical “relationships” this week.


On Wednesday, we met with our new neurology specialist.   I suspected appointment #1 would be long on talk, and low on action.  And when we were given 3 names before the appointment, with a new neurologist every time the appointment was adjusted, I became a little nervous.  But let me say…3rd time was the charm!  We LOVED Dr “S”.  It was in fact all talk…but she was so attentive, organized, and interested.  We had a fantastic and thorough conversation.  They are still going through the novels of records that were transferred from our last hospital, and they asked for a few more days to sort through info.

We will be back in touch next week to set up appointments for overnight EEGs with plans to adjust their medicinal “cocktail”.  I was pleased to hear they still felt there was potential for success via Sabril and a new medicine, without having to race to steroids or diet changes.  I’m not opposed to either of those, and we may land there anyway.  But if we can achieve success with oral meds…that feels good.

In general, I loved her demeanor, and found her very easy to relate to and talk openly with.  To clarify with her what our overall philosophy for the boys is…I said that I know what we are dealing with.  I know the life expectancy.  I know the stats.  And I know these two are not yet exceeding many of the expectations.  But we see no reason not to do everything we can to help them reach their maximum potential, and increase their quality of life.  She is in complete agreement, and feels like a great teammate to have going forward.


On Thursday, we met our local pediatrician.  He is actually double boarded in Neurology!  This appointment was interesting.  It was LOW on talk.  Not much was said.  There were a few unstartling revelations…like “they are small”.  And “Is he always this quiet”.  But what lacked in meaningful conversation was made up for in progress.  He helped book the GI consult to get us in for a swallow study and reflux check.  That appointment will be at our children’s hospital as well, but his office booked it for us!  Speaking of the office, they are also working on getting us in for Physical, Occupational and Speech therapies, most likely on a weekly basis.   They are trying to help us chase down Home Health and Palliative Care options closer to our house (not an easy task).  So…it feels like we chose wisely and will benefit from having an engaged and helpful staff to assist us.  And anyone who helps me walk away with less to dos…well that’s hard to beat!


The boys and I are heading back on Sunday.  I’m working a few more days and we have a few loose ends to tie up.  But soon…very soon…the 5 of us will be together again, and in what is shaping up to be the absolute perfect home for our family!