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Tuesday, December 1, 2009

Happy Hanksgiving!

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:

11-21-09-eeg

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:

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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:

11-23-09-Susie


Nanna:

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Cara and Joe:

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Talisa and Jason:

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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:

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

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...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.

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11-26-09-eating-cake

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

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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.

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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.

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Henry got to play with his cousin Emika.

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

11-26-09-family

We hope everyone had a Happy Hanksgiving!

7 comments:

Kate said...

I'm glad you had a wonderful birthday celebration holiday (with both PR and PA families)! I look forward to spending time with you all later in the month. Big hugs for the birthday boy! xoxoxo

ilipilli said...

Happy birthday Henry! What a handsome boy. Love the photos of him reaching for the beads. (Lovely photos of you two as well - stunning new haircut Meade! Glad to see you looking so relaxed and happy.) Lots of love as always xx

Doriann said...

I really wish I could have been there for Henry's birthday/Thanksgiving festivities! It looks like everyone had a great time. Love all the pictures! Much love and hugs to you all!!!

Angela said...

Happy Hanksgiving! we are so happy to know you, little man! How wonderful it must have been to have both families together.
We love you guys!

wjones7412 said...

Happy Happy Birthday! Wow, he's already one year old. Amazing.

I think he's trying to tell you he want's to go to mardi gras next year.

-Will

Steele Blog said...

Love the photos and the updates. Shiny beads, huh? I am going to try those with the twins. I am so pleased to know that there is a toddler out there who is actually bigger than Brandon. Your Hank is so beautiful.
I am back at work so let's plan a play date for a Saturday.

Dream Mom said...

Happy First Birthday! What a handsome young man!

Glad to hear he didn't have any seizures. My son has had many EEGs over his lifetime so I understand where you are coming from.

I just got off the phone with Angela, a friend of yours. We know her from the Make a Wish Organization. If you'd ever like to chat, you can reach me at dreammom90@yahoo.com I lived a few blocks away from Angela.

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