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.

Hot Hot Hot

This summer is flying by at an alarming rate. Given how hot that past few weeks have been, this is not entirely a bad thing. Of course, Henry is not bothered by the hot weather in the least. He loves to be outside in the sun, and he is fascinated by the transition from indoors to outdoors and back again. Each time the light and temperature change as we cross a threshold, his jaw drops in amazement, and he swivels his head from side to side.

Henry had an appointment with his pediatrician at the beginning of June. Although his height had shot up substantially to 35 inches, his weight had only moderately increased to about 27 and a half pounds. His doctor assured us that we were not starving him, but told us that we should add calories to his diet. We switched his morning banana for oatmeal (with butter and yogurt), started adding a little olive oil to his veggies, and added a mid-morning snack. We (OK, it was mostly his dad) might have been a little ambitious, because he gained 3 and a half pounds in the following six weeks. He certainly looks like a sturdy little boy now, and I think we have found a happy medium with his diet lest we soon find ourselves unable to lift him.

Last week, we had his hips X-Rayed at RIC. We were elated to discover that the head of his femur is now in its proper position within his hip joint. Our standing practice is paying off. His botox treatment is wearing off (as expected), so he will receive another in early August.

After a seizure-free 5 months, Henry did have a short seizure last week. Given his rapid weight growth without an accompanying dose increase of his seizure medicine, this was not entirely surprising. We have increased his medicine and have not witnessed another seizure since.

Henry loves the hot fudge sundaes at Margie's Candies, and so do his cousins:

For those of you curious about what goes on during Henry's physical therapy with Carol:

We took Henry to the Cancer Survivors' Walk. Although he didn't do much walking, he did get to ride a trolley and meet Willie the Wildcat:

Henry had a great time at the Red Baraat concert:

Can you believe we went to the Chicago Botanic Gardens and forgot to bring our camera with us into the park? So, here we are eating a snack in the parking lot:

We met Meade's friend Beth, her husband Chris, and adorable daughter Stella for breakfast one morning:

Of course, Henry has had lots of visitors. We have missed taking pictures of a few of them, so apologies to anyone who feels left out. You'll just have to come visit us again.

Meade and Henry had a great time with Dana and her daughter Zola, Elaine and her son Will, and Erika (no pressure...):

Several of my colleagues from Northwestern live close by. We hosted dinner one evening for the Uptown/Andersonville crew:

And of course Henry always has a great time with his pal Owen:

Henry continues to dislike being strapped into his chair or carseat. However, sometimes he is simply too tired to struggle. Here is Henry asleep in his carseat with one of his favorite toys:

That's all for now. We hope to hear from or see you soon.

1.5 years young

We have been very busy since our last post. I know that we are overdue, so I will try to make it worth the wait.

Henry has had a couple of good reports from specialists. In early May, Henry and Meade spent the night at Evanston Hospital so that he could have an all-night EEG. This test was scheduled because we witnessed some movements that were suspicious, but we could not determine whether or not they were seizures. Our neurologist wanted to monitor Henry overnight because the transition periods between wake and sleep are the most common times for seizure activity. The test showed no seizures, so we were quite pleased with that. Here is a picture of Henry with his leads attached and his head wrapped in bandages:

Henry also had a follow-up appointment to check for the state of his left hip after his Botox injection. The X-ray showed slight improvement in the position of his left femur, so we are pleased with that progress. In early July, he will have another X-ray followed by a repeat Botox injection. Botox only lasts for a couple of months, so we will continue this course of periodic injections and X-rays until either his hip forms normally, or we are forced to have surgery.

To help correct his hip issue as well as to further develop his head control, we have been using a piece of equipment called a "gait trainer." Although a gait trainer is typically used for the development of walking, we can lock the wheels on Henry's and use it as a stander. As shown in the following pictures, he usually enjoys time spent in his stander:

Of course, we also continue to spend much time practicing sitting:

Henry has had a couple of very important visitors this month. His Nanna came in from Pennsylvania to spend a few days with us. We forgot to snap many pictures, but we did get at least a couple:

Kate came to visit us from Montana:

When Henry is concentrating, he cannot be bothered with trivial tasks such as swallowing his saliva. Therefore, he has developed a reputation as a prolific drooler:

Henry has great hair. It is increasingly becoming little boy hair instead of baby hair. It looks best right out of the shower:

And finally, a shameless plug... I am raising money for the Multiple Sclerosis Society of Illinois by bicycling 175 miles on June 12 and 13. If you would like to contribute to my ride, please visit my fundraising website here.