Here is the latest on our family...

Thursday, December 4, 2008

Day 9

Today was another good day for Henry, with measured positive news on the clinical front.  He had the EEG today, measuring his brain wave activity for about an hour.  The neurologist was happy that the test was greatly improved from last Friday, but there is still some evidence of seizure activity within his brain.  They are going to begin administering a maintenance dose of phenobarbital to keep the current, relatively-low level already in his body.  This particular medicine is easy to administer, it simply gets mixed in with his breast milk.  Since it is vaguely strawberry flavored (I tried a little, but not enough to take the edge off), he gets a strawberry milk shake of sorts once per day.  In one month, they will perform another EEG as an outpatient procedure.  

The occupational therapist worked him over for a while.  His muscle tone and sucking are coming along, but his gag reflex continues to lag behind.  Apparently the blood in his ventricles is irritating his brain in such a way that this reflex is suppressed.  We're hoping that he makes some progress on this front soon.  In the meantime, he seems to be enjoying the milk though his feeding tube.  

We also met a psychological development therapist today, but Hank was not really interested in waking up for her.  She took his rejection pretty well.

Otherwise, we are beginning to get into a rhythm with Hank.  We play with him every three hours around his feeding/vitals/diaper time, then let him sleep in between.  This seems to provide him with the correct balance of activity and rest, and it gives us a chance to take care of our own business.  

Today was Meade's birthday, and Henry made her a card (with a little help from his nurses).  We had many visitors this evening, so we went for a quick birthday dinner at a nearby restaurant.  

Here are some pictures from today:



crampton phillips said...

Happy Birthday Meade!

It is so great to follow little Hanks progress!

cindy, russell, sara, julia

Kate said...

It's great to hear about Henry's new developments each day on this blog.

I'm thrilled that the new IV allows for more and closer cuddling!!!

Much love,

Steele Blog said...


We are praying that Hank will meet all of the milestones the doctors and nurses have set for him so he come home very soon.

He is so adorable!

Denise, Brian and Brandon

RandomMan764 said...

Looking good! Things look to be progressing well, our thoughts and prayers are with the three of you.

-Mike, Colleen, & the kids