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Tuesday, December 21, 2010

2nd Annual Hanksgiving

No longer a baby, Henry is now two years old. As his birthday was the day after Thanksgiving, we celebrated a day early in order to enjoy cake and pie on the same day.

Henry's day of surgeries at Children's Memorial Hospital was without incident. He has new tubes in his ears and his testes are in place. The MRI was disappointing but not surprising. His brain has experienced quite of bit of atrophy. Although his shunt is functioning properly, his ventricles remain large as cerebral spinal fluid fills much of the space that was once occupied by brain tissue.

Believe it or not, this photo was taken before anesthesia:


He continues to make slow and steady progress with his therapies. One of his favorite weekly activities is his music class, Wiggleworms. We attend the 6 - 12 month old class and sing songs that involve lots of clapping and body awareness.

We finally found an outdoor activity that Henry can enjoy visually – Zoo Lights at the Lincoln Park Zoo.


Aunt Cara and Uncle Joey stayed with us for Hanksgiving. Here we are getting ready for a delicious breakfast at Over Easy:


Here is Henry trying on a birthday outfit from Cara and Joey:


What Thanksgiving would be complete without a deep-fried turkey? (Do not try this at home.)


Backing up one holiday, we had a great time haunting the streets of Park Ridge with cousins at Halloween. Henry wore an adorable frog costume – er, well, it would have been adorable if Henry were about 20% smaller. We'll find a better-fitting costume next year.



We got to spend a morning with Henry's friend Owen. Owen is an impressively mobile and curious fellow these days.


I gave Meade and Henry a much-needed break and hiked to the bottom of the Grand Canyon with Mike, Zach, Susan, and Peggy. We had a fantastic time.


Henry is still not enamored of his high chair. He has developed a couple of tricks in hopes of taking his meal in a lap, as nature intended. One of his tricks is falling asleep and refusing to eat. Once removed from the chair, however, he miraculously awakes and finishes his meal. Jennie took this photo one afternoon at dinner time:


Here is another sleeping shot, although this one was more genuine:


Henry's head control is getting better. Some of the techniques that we use to help him improve his head control are...

his arms braced on our chests:


crawling position:

20101121 Holiday Card 2

and sitting:


Here are some posed pictures intended for holiday cards.


20101121 Holiday Card 1



Finally, Henry has been doing quite well in his gait trainer. We made a couple of videos of the first time that he completed multiple trips (6!) up and down our hallway without needing help from us.

Sunday, October 17, 2010

Not quite 2

Even by Henry's standards, we have been extraordinarily busy over the past few weeks. During this time, Henry has been happy, healthy, and seizure-free. Given the long period of time since our last post, we have twice as many photos to share as we typically do. You may notice that a large percentage of these photos feature Henry held by or strapped to me. I just want to point out that I am not intentionally seeking the spotlight – riding Henry's coattails to fame. Rather, the number of people willing to carry Henry any distance is inversely proportional to his weight. If he gets much bigger, he'll have to carry us.

Henry has been taking a very low oral dose of an anti-spasticity medication called baclofen. In combination with his latest botox treatment, it appears to be greatly reducing the stiffness in his arms. We are able to do more reaching, stretching, and exploring his body. He particularly likes to slap his knees and clap his hands, although he needs assistance to do so.

We have one very busy day on our medical calendar coming up in November. Henry will have a full MRI, a procedure that requires sedation. Since he will already be sedated, he is also going to have his retractile testes stitched into place and the tubes in his ears replaced.

In August, we had a followup visit with the vision specialist in Pittsburgh. She was pleased with his progress since his initial visit in February. She believes that his vision has now outpaced his motor skills. His inability to either support himself in an upright position or accept the help of positioning equipment (high chair, car seat, etc...) is a real challenge. His head control does continue to improve, so we remain hopeful that he will be sitting and playing independently one day.

Over the past couple of months, Henry has become generous with his smiles. He even laughs now and then, most frequently after a loud kiss on the cheek. He is becoming a happy little guy, and we cherish every grin.

And now for the story of our past couple of months in pictures...

Our travels began with a weekend trip to see Henry's Aunt Cara and Uncle Joey in St. Louis. We were delighted that Aunt Dori and Uncle Nate were able to join us. Here we are in front of a giant Chihuly sculpture at the Missouri Botanical Gardens:


The heat was rather draining, and we were quite tired afterwards:


The very next weekend found us in Pennsylvania to visit family and see the vision specialist in Pittsburgh. We bought a special flotation device for Henry so that he could experience the freedom of reduced gravity in the swimming pool. As you can see, he really enjoyed it.



He also got to spend time with his Grammy...


...and Nanna and aunt Talisa...


...and Pap, of course.

Shortly after returning from PA, it was time to go to cousin Rachel's wedding in Baltimore. For this trip, Henry flew on an airplane for the very first time. As you can see, he loved O'Hare (and who doesn't?).


Here we are on the airplane. Henry slept for nearly the entire flight.


Henry was able to meet many members of my family for the first time. Unfortunately, we did not do a very good job of documenting that in photos. We did get another one with Nanna.


Here we are back in Chicago enjoying a visit with our friend Whitney (notice Henry's dinosaur camouflage PJs):


Henry's cousin Holly celebrated her first birthday in style – with ice cream!


We had a fun breakfast with Erika, Eno, Dana, and Sandra.


We spent part of the Labor Day weekend in Door County.





Big Don and Jim would not share the seesaw with the other children.


We topped off all of this travel with our first real family vacation. We went to Oregon, dividing our time between Portland and the coastal town of Manzanita. In Portland, we were graciously hosted by Jenny and Toby. They threw a party one evening:


Henry was delighted to meet Brian and Sera's daughter Sofia.


We got to spend some quality time with cousin Lauren.


Lauren, Seth, and Sage hosted us for breakfast one morning.


Jenny and Henry are resting in preparation for what will become a big day of hiking.


Jenny and Lauren accompanied us on a steep hike up Mount Hood. We didn't quite make it to the very top.


We then headed to the coast. Here are Henry and I hanging out on various gorgeous beaches:




At one point, we encountered a baby seal. It pondered us a few moments before lumbering off into the waves.


Can you believe we actually managed a full-family shot?


Our friends Chris and Laura joined us for our last couple of days on the coast.


We shared a great little house in Manzanita.


Back in Chicago, we were pleased to host our friends Peter, Sarah, and Ian. Here are Sarah and Ian enjoying the model railroad at the Chicago Botanic Gardens:


Sarah ran the Chicago Marathon while the rest of us cheered her on and partied. Grandma Judy and cousin Emika were especially enthusiastic.


Watching a marathon can be tiring. Here we are taking a break from the action with cousins DC, Charlie, and Harry and our good friend Kathy.


Congratulations for making it all the way to the end of this post. We'll attempt to return to our usual monthly schedule for postings, but I cannot make any guarantees.