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.

Spring time

We finally have some reason to believe that perhaps we will not see more snow this year. We are certainly enjoying the end of our hibernation.

Henry is receiving a gait trainer tomorrow. Although he is not ready to learn to walk, the wheels can be locked into place to help him learn to stand. Since he is not yet rolling or sitting, standing may also seem like a stretch. However, if he will cooperate, practicing standing should be very good for his hips.

An X-ray recently revealed that Henry's left hip adductor muscles are beginning to pull the head of his femur out of its proper position in the hip socket. This is a common problem for children with cerebral palsy. We are in the midst of our first course of action to mitigate this problem. Henry received a botox injection into his adductors in order to loosen them temporarily. The looseness should last from three to four months. During this time, we will be trying to keep his legs at least 30 degrees apart whenever practical. This includes holding him with his legs straddling our bodies and positioning him for sleep with a specially-designed foam wedge strapped between his legs. Bearing weight through his legs will also help his hips form properly. We plan to use the new gait trainer to this end. If our efforts are successful, we will be able to avoid having surgeries to either cut one of the adductors or physically reshape the bones.

We anticipate beginning Henry's hearing therapy this week. We are looking forward to improving his auditory response to his environment and to us.

Henry underwent another fast MRI last week to check on the size of his ventricles. His head circumference had not changed from his previous visit, which indicates that the pressure inside his head is likely normalized. However, the image showed little, if any, change in ventricle size from the previous MRI. The size of his ventricles is determined by the balance of intracranial pressure and health of the brain tissue. That his ventricles remain large despite his head size stabilizing indicates that Henry's brain has most likely experienced quite a bit of atrophy. This is not the conclusion we want, but it becomes increasingly certain as time passes. We will have another fast MRI in three months, and then a full MRI around his second birthday.

Henry continues to develop at his own pace. Here he is working out with his first dumbbell:

Obligatory tummy time:

We discovered that he loves brownies:

Henry isn't the only one making progress in our house. Here is Meade practicing sitting:

Photo credit to Jennie for snapping him napping:

Here he is hanging out with Big Don:

Today was Easter, and it was a fine day for an Easter egg hunt:

Holly had a very busy first Easter:

Emika was able to dodge the paparazzi long enough to find some eggs:

Henry found an Easter egg of his own:

Our happy family:

For a few more photos of our Easter, check here.

All over snow

As we head into the final stretch of winter, we would like to share some of what has been happening with Henry during the first weeks of 2010.

Henry's head circumference has remained stable since his shunt revision, so it appears that the surgery was successful. As you can see from this picture, his scar is barely visible:

He did finally have the ABR performed in order to accurately assess his hearing. The test demonstrated that although Henry's hearing mechanism is functioning normally, his brain does not properly or consistently interpret sound. We know that Henry hears something because he responds in his own way to our voices, and he startles at certain sudden, percussive sounds. We are in the process of finding a hearing therapist in order to help us teach Henry how to use his hearing more consistently.

We made a snowy trek to Pennsylvania in early February. We had dual purposes for this trip: visit a vision specialist in Pittsburgh and see family. The vision specialist gave us many good ideas for helping Henry to continue to improve using his sight. We will likely visit her again in August.

We were able to see Henry's Great Grammy, Nanna and Pap, and all of the aunts and uncles except Dori and Nate, who were snowed in.

After much waiting and drama, we finally have an adaptive chair for Henry. The chair helps to support his body and can be positioned at various heights. He still much prefers to be held, but here he is eating dinner in his chair:

We stayed with the Costellos while in Pittsburgh:

And here we are with my family in Curwensville:

He also got to snuggle with Grammy:

Henry and I watched the Superbowl, but were disappointed to discover that the Steelers weren't playing:

Henry's favorite toy continues to be strings of beads. You can see from this picture that he'll almost roll over for them:

Henry had fun playing on a set of soft stairs at Gymboree:

Henry's friend Owen is learning lots of new skills and serves as a great example for Henry:

Here is Henry with his friends Ciara and Will:

Most recently, we were pleased to be able to host Aunt Cara for a couple of days:

We are now looking forward to a busy start to Spring!