EEG #6

In the days leading up to Henry's sixth EEG, he became increasingly disinterested in eating. We were disappointed to have to reinsert the feeding tube after not using it for five days. Then, just as we were getting used to seeing Henry with the feeding tube again, he had a brief seizure, the first we have seen since Christmas Day. It only lasted about five seconds, but we were nevertheless concerned. Fortunately, his EEG and appointment with the neurologist were already scheduled for the following day.

This EEG was much improved over number five. During a two-hour observation period, he had six seizures in the left hemisphere of his brain and none in the right. Although it was not the best possible news (seizure free), our neurologist was encouraged by his progress and the efficacy of the new medicine.

Our neurologist also had an explanation for his disinterest in eating: too much medicine. He was simply too dopey to eat. We have begun to wean him of phenobarbital, something we have been wanting to do for a long time. Henry should be phenobarb-free in about a week and a half. In the few days since we reduced his dose, he has regained much of his interest in eating and is becoming increasingly vocal. We have even seen a few pouts.

We decided to take a few pictures at Henry's EEG.  First, they put wires all over his scalp.  Each gauze patch on Henry's head has a single wire lead and a big glob of paste under it.

The wires connect to a punch-down board that has a silhouette of an arial view of a head on it.

To hold everything in place, they wrap his head in a bandage.  As you can see, he sleeps through the test.

Many people have complimented Henry on his eyelashes.  They are long.

Very long.

Henry gets plenty of tummy time.

Here are some other photos of Henry and his friends:

Going to work

Here are a couple more pictures from last week - Henry's first visits to his parents' offices!

Happy Valentine's Day

Henry has begun to vocalize.  His sounds aren't predictable and do not always have a clear purpose, but we are always happy to hear his voice.  He has had a couple of cries, though these only last for a few seconds.  

Henry has been on full oral feeds for five days (no NG tube!).  We're watching his weight and tracking his intake very carefully.  If we need to supplement his oral feeds, we will have to reinsert the tube.  However, we're hopeful that we will be tube-free from now on.  

Henry had lots of appointments this week, including with a physiatrist at Rehabilitation Institute of Chicago.  She had many positive things to say about Henry.  She was happy that he moves his fingers and toes independently, is able to breast feed, and has a very robust appearance.  Her main concern is regarding the trouble that he often has tracking objects.  She had a toy with flashing lights and lots of noise, and Henry didn't even seem to notice it.  She assured us that we are getting the proper therapy for him and that drastic measures of any sort are not currently warranted.  At her suggestion, we may seek a specialist to teach us new ways to stimulate his vision.

Henry has a big appointment coming up on Tuesday.  He will endure his sixth EEG (other than having goo smeared all over his head, the test is not actually so bad).  We hope that this EEG will be clearer and that we can then begin to wean him from the phenobarbital.  

We got a new camera yesterday, so hopefully the indoor shots of Henry will be a bit sharper.  

Henry loves his tummy time:

He also loves hanging out with friends and family:

Henry has lots of toys:

Henry is very lucky to have such a beautiful Mom:

Diaper changes are so much fun:

And here are some other random shots of Henry:

Super Bowl, etc...

Henry has had two major projects since our last post.  First, he cheered the Steelers to victory at the Super Bowl:

More importantly, he has been making great strides in eating orally.  As he adjusts to his new seizure medication, he occasionally has extended sleep periods.  We sometimes decide to use his NG tube to feed him during one of these mega-naps just to make sure that he is getting enough calories to sustain his growth.  Otherwise, he is becoming expert at both bottle and breast.  

Although he is still fairly floppy through his torso, he is gaining strength through his neck and shoulders.  He is becoming increasingly adept at picking up his head during tummy time, and he even lifts his shoulders off of the floor at times.  We are also noticing that his visual tracking is improving, and he occasionally reaches out for objects that pique his interest.  

We believe that we are seeing the beginning of a smile after a big meal.  I'll try to capture a few of these for our next post.  We still are waiting for him to begin to imitate us in any way.

We have found two things that Henry loves:  sucking on our fingers and poetry.  Whether it's Dr. Seuss or Coleridge, Henry loves to hear us read or recite verse.  

Henry's Aunt Cara and Uncle Joey visited him this weekend.  Here are some pictures of their visit which included Henry's first trips to Millenium Park and Margie's Candies:

Henry has yet another busy week.  He has a weigh-in appointment and occupational therapy on Monday, physical therapist on Tuesday, and an appointment at the Rehabilitation Institute of Chicago with a physiatrist on Thursday.  He has a formal pediatric appointment on Friday.  

Henry entertained many guests since our last post: