Henry Louis: 2009

What a fantastic week we had! Henry's birthday fell on Thanksgiving this year (thanks to Ted and Rob for naming the new holiday), and we had many visitors to celebrate the convergence of gratitude and gluttony.

Backing up just for a moment: Henry had an EEG on the 21st. The test showed no signs of seizures but plenty of abnormal brain activity. We have come to expect the abnormal activity, so we are focusing on the positive aspect of a seizure-free test. Here is Henry getting ready for the test:

A couple of days prior to that, he had a fast MRI to monitor his ventricle size. His head circumference measurement indicates that although his head is still extremely large, it is now growing at an appropriate pace. We were hoping that the MRI would show a significant reduction in ventricle size, but this was not the case. Although the ventricles are shrinking, they are shrinking very slowly. The change from his previous test was barely distinguishable. We do not yet know what this means because of ambiguities resulting from the interaction of the shunt and the brain. The combination of normal pressure within the cranium and continued large ventricles would indicate that the brain has undergone much atrophy. Henry's surgeon told us that the ventricles usually reach their final size within about a year of surgery, so we still have time to see improvement.

Here we are waiting for the surgeon to arrive:

We also saw the pediatrician last week. He is almost 27 pounds and 33.5 inches tall. In short, he is gigantic. He received his H1N1 vaccine along with the standard first-birthday regimen.

Within the next couple of days, Henry will see his neurologist, have an ABR to determine the range of his hearing, and visit a therapeutic equipment specialist to make sure that his new AFOs fit him correctly (We're fairly sure that they do.).

Back to the fun stuff...

Henry had many visitors from my side of the family including cousin Susie:

Nanna:

Cara and Joe:

Talisa and Jason:

Pap somehow avoided being photographed individually, so you'll have to find him in the family portrait at the end.

Henry loved his first Thanksgiving dinner:

We did not suffer from a shortage of desserts...

...but Henry was most interested in his very first birthday cake, a "bib" cake (a family tradition on first birthdays) made especially for him by his Nanna.

Hank received many (too many) great birthday presents including this stylish hat:

We are spending as much time as we can developing Henry's vision. We discovered that his favorite non-illuminated objects are strings of shiny beads. Here are some pictures of Henry with his beads. Notice that he is even beginning to reach for the beads, integrating vision with motor skills.

The beads are also highly motivational for head control. We use them while we work on sitting so that he focuses on watching the beads rather than struggling with his floppy body. He is making great progress with sitting, but we still have a ways to go. I can only let go of him for a second or two before he slumps over.

Henry got to play with his cousin Emika.

And finally, here is Henry posing with my family. We certainly enjoyed their visit, although we missed Dori, Nate, and Grammy.

We hope everyone had a Happy Hanksgiving!

October came and went in a blur of visitors and therapy appointments. Henry continues to be seizure-free, and he is making slow, steady progress with his various therapies.

In physical therapy, we are focusing on rolling over. If we initiate the roll through his shoulders, he can complete it with his legs and vice versa. Now he just needs to figure out how, when, and why to initiate the roll.

We now feed him a small amount of meltable solids (aka cheese puffs) each day. The primary goal is to teach him to chew solids. Becoming an obedient consumer of corn-based foods is secondary.

Henry's neurosurgeon confirmed that he believes the shunt is now functioning properly. We will measure its progress with a fast MRI on November 11.

Dori and Nate spent a weekend with us. It was our first chilly weekend of the year, but that didn't stop us from exploring Millennium Park:

For children, the month of October is filled with the anticipation of Halloween. Although Henry does not yet know the sweet taste of candy, he had three Halloween costumes from which to choose.

The tiger costume was a little too scary. We wouldn't want to frighten the neigborhood:

He wore his bear costume to a Halloween party with his cousins:

But for Halloween day, we chose the cutest (most humiliating) costume we could find:

The highlight of our month was a trip to Pennsylvania. Here is Henry hanging out with his great grandmother, Grammy:

His aunt Talisa:

and his Pap:

Here he is practicing head control:

And enjoying the great outdoors with his dad:

Henry's friend Owen came for a visit earlier this month. They had a great time playing, and Owen got to practice being a bully by stealing Henry's pacifier.