The boys and I are settled in for the night at the Haven House. We get started bright and early tomorrow at Children’s.

We start at 7:00 with follow-up EEGs, and move on to vision appointments, and neurology follow ups. We hope to wrap up by 4:00 and still get home in time for dinner.  Sounds easy enough, right?


Here are some photos of our new stroller!  What we lost in ease of transition (baby carriers are sooo easy to snap in and out of the old one) we gained in high fashion, better off-road capability, and storage.  There are other perks to this one too, but for now, I’m just glad they are cozy in it.


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This place is similar to a Ronald McDonald house.  We have a nice room, and I’ve had a warm meal.  I paid less for a room with no tv.  Lucky for you, that means nothing distracted me from this party!

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I’ll put updates out there sometime soon regarding how tomorrow goes.  I’m not expecting big changes in their EEG, because we are still seeing spasms, even the occasional long one.  I’m hoping their background noise has lessened.

I’m anxious to see if we can do any better visual assessments.  The boys have been awake more lately, especially Nolan.   So we have that going for us.

Both boys have the sniffles, and Landon has been struggling with feeds the last few days.  Some of his more recent choking events have been down right scary.  We’ll talk about all of that tomorrow, as well as the potential breakout of Enterovirus D 68 locally that I hope to learn more about once more details become available.

Until then…we better get some rest!