Here is the latest on our family...

Wednesday, December 3, 2008

Day 8

Today was another huge day for Henry and for us.  His seizure medication is nearly down to the desired maintenance level, so he is quite alert and responsive.  This also makes him rather sensitive to stimuli and fairly easily agitated.  Our duties have suddenly changed from managing the care of a rather sedate infant into trying to be loving parents in the context of a hospital stay.  This is a welcome change.

Henry's progress

Henry met with the swallowing team, consisting of a speech pathologist and an occupational therapist.  Everything is coming along well except for his gag reflex.  They exercised that quite a bit, much to Henry's dismay.  This is unpleasant but necessary work if he is to move to bottle feeding.  

Henry had his first cranial ultrasound today.  The technicians took pictures of his brain ventricles.  Our neonatologist read the results and informed us that Hank's ventricles do not appear to be unusually swollen.  Future  tests will be compared against these results to monitor his progress in clearing the blood from the ventricles.  

He gained a little weight (good), and his head circumference shrank a little (also good).  

The line directly into Henry's umbilical cord has been removed and has been replaced by an IV in his arm.  This switch will make holding him a lot easier and will facilitate some of the work that the occupational therapist wishes to do.  

Finally, Henry is no longer lying naked to the diaper under an electronically-controlled heating lamp.  He is now wearing clothes like a civilized baby.  Perhaps he has done something wrong, though, because he now sleeps in  baby jail:


We had many visitors today, including several of my friends from my office and Meade's cousins Dave and Michele.  Unfortunately, they arrived at a rather busy time, and we neglected to snap pictures of them.  

Tomorrow, Henry has a very important test.  His neurologist has ordered an EEG to see if there is any seizure activity continuing in Henry's brain.  If there is none, his seizure medication will be discontinued.  If some remains, we expect that he will receive a maintenance dose of seizure medication for at least the next few weeks or longer.  

Holding Henry before the IV change


Holding Henry after the IV change









Goodnight, Henry!



PenJames said...

Dear little boy. Dear little family. Still thinking of you all x

Nilsa said...

You two are so amazing. This journey you're taking with Henry is also so amazing. So filled with hope. Sounds like great progress was made yesterday. And by the looks of that last picture, you might have a thumb sucker on your hands. =)