Hopkins..Day one

Hopkins, day one

Having to be somewhere with Hayden at a specific time in a different city can be trying.  Tim & I were up early, but thankfully Hayden continued to sleep…. this was probably a really good thing since he couldn’t have anything to eat this morning.  He actually did really, really well.

We arrived at Hopkins at 8:30 a.m. & waited…. but not too long :). We were met by Dr. Kossoff & other members of the ketogenic team to ‘get the ball rolling’.  The one thing that stands out is that Dr. Kossoff said “Wow, Hayden is on a lot of medications…too many”.  Every teaching medical hospital is different, the routines are slightly different with tons of new & different people but essentially it is the same—just some new twist to being hospitalized with non-standard run of the mill child, aka Hayden.  I must say that everyone here at John Hopkins  has been exceptionally respectful & nice to us & Hayden thus far.

He has handed the no food much better than we anticipated, but it was hard to NOT let him have his favorite foods while we were eating too.  Finally, at 5:30 Hayden got his first ‘keto egg nog shake’.  We were worried that he might not drink it, but gulp IT WAS GONE!  But the quantity that he got was very little…less than half a cup of nutritional fluid today.

How did we keep Hayden occupied?? Many trips to the playroom, many ‘stroller rides’, a trip to the play garden, toys. Tomorrow will be challenging, as the weather will be rainy. 

Tim & I have a couple of classes tomorrow.  This is all new to us.   I don’t do well with ‘down time’ so; this down time on purpose will be good for me, LOL.

Not happy watching us in the eating area....that was really hard for us to not give him any food, but necessary

Watching Little Einsteins....one of many times

Hayden's first keto eggnog shake...he thought it was pretty good!

And he is down for the night