Summer is coming to a close. Henry loves to be outdoors, so we have greatly enjoyed the mild weather in Chicago throughout this season.
Henry is using his vision a lot more. He is becoming increasingly interested in faces, but his favorite objects to look at are trees.
We recently discovered that his glasses prescription needs to be significantly increased. Once we receive his new glasses, his world will be all the more clear. This picture shows Henry with his developmental vision therapist playing with the lightbox.
Unfortunately, Henry's seizures seem to be returning. We have gone through several rounds of increasing his seizure medicine, observing a seizure a week later, and increasing the dosage yet again. We still have a few dose increases of his current medicine before we hit the maximum safe amount, but each increase is an indication that we may need to choose a different seizure medicine to keep his seizures under control.
We finally found something Henry enjoys that does not involve someone holding him. Here is a video of him playing with a mobile that was given to us by our friends Bryan and Adele. He not only watches the hanging animals drift by, but he attempts to grab them.
Our friends Peter, Sarah, and Ian spent a weekend with us in August.
We had a lot of fun playing on the slip-n-slide with the cousins.
We have had many other visitors this summer.
Carol visited from Michigan.
Jess dropped in from San Francisco.
Mark braved the journey from the wilds of Elgin.
Molly came from LA.
Bobby stopped over on his way from Vermont to Vancouver.
Mom spent a week with us. We all greatly appreciated her help and company.
Henry is pleased to have a new baby girl cousin, Holloway (Holly). As you can see, she was cute from day one.
Our friends Mike, Angela, Isabella, and Will are moving to Minneapolis later this month. We will miss them terribly. We had a fun excursion with them to the Morton Arboretum.
Here are some random pictures of a Happy Hank.
Finally, here is a shot of Henry getting clean with his cousins.
We have had quite a busy summer. Besides Henry's many ongoing therapy sessions, we have had a few highlights.
Here we are with Henry's cousins looking quite patriotic on the 4th of July:
We finally found an opportunity to spend a weekend in Door County. Here we are getting ready for a road trip:
Here is lunch time with cousins:
Jim and Susan's house is surrounded by lush vegetation. When Henry spotted the fireweed, he broke into a huge grin:
Henry also got to spend some quality time with Diana:
We have been lucky enough to have quite a few visitors this summer. To name a few...
Ted took a brief hiatus from the glitz of Los Angeles:
Kate moseyed in from Montana:
Will also get to spend a couple of days with us:
Henry has been progressing well with his therapy. He is eating baby food several times per day:
He also gets lots of sitting practice:
In other exciting news, Henry has a brand new cousin, Emika Alice. Here she is with Peggy:
And on Daddy Wesley's shoulder:
As far as Henry's general health is concerned, within a week after his shunt implantation he began sleeping through the night about half of the time. To put that in perspective, prior to the surgery he had slept through the night a grand total of three times. We are all a lot happier with the dramatic increase in our dormant hours.
We had a little bit of a scare this past week. On Tuesday, Henry had a runny nose and a slight fever. By Wednesday, the runny nose and fever had subsided, but he refused to nap or eat and spent the day whimpering to himself. We were instructed by our surgeon to take him to the emergency department at Children's Memorial Hospital to make sure that he did not have an infected shunt. Once we arrived, we learned that the analysis of his cerebral spinal fluid would take up to 48 hours. The good news was that they could remove the fluid directly from the shunt valve rather than doing a spinal tap. Fortunately, our stay was cut short when Meade and I both contracted terrible colds. The doctors were convinced that Henry's symptoms were completely consistent with a cold and that the best thing for everyone was lots of rest in our own beds. We spent a total of 24 hours at the hospital, and we were all happy to be home again.
We have a lot more going on in August, and we are especially excited that Henry's Nanna will be visiting from Pennsylvania.
To close this post, here is a picture of Hank fast asleep. The feet belong to Bean, his pet moose.
We were discharged from the hospital around noon on Saturday, possibly a record for the earliest anyone has ever been discharged from a hospital. Before we left, Hank had a fast MRI in order to get a baseline image for future comparisons. We have not yet seen those images, but we do not expect any real change so soon. One of the residents had to reset Henry's shunt after the MRI.
Since leaving the hospital, we have been hanging out at home recovering from an eventful few days and attempting to get Henry back into a normal sleep/wake schedule.
Here are some pictures of Henry that we have taken over the past few days:
Last weekend, we took Henry for his first swim. He will have to wait a few days for his stitches to heal before going again. He seemed to enjoy being in the water.
We arrived at the hospital bright and early on Friday to prepare for the surgery.
Henry's head before the surgery...
...and after the surgery. The blue on his head and ear is from a specialized device (called a "ball point pen") used for denoting which side of the head will receive the shunt. The orange stain is disinfectant. The stitches do not need to be removed, but we do need to keep them dry for a few days. The valve sits under the scalp just below the cut. It does not show well in this picture.
He has a matching scar on his tummy. This one has a thin artificial skin covering it. Surprisingly, it does not seem to cause him any discomfort at all.
Here are some pictures of Henry sleeping soundly after the surgery.
Finally, he awoke enough to take a bottle.
Henry looked adorable as we prepare to leave the hospital.
Hank is awake and just finished breast feeding. His voice is hoarse from being intubated during the operation, but he is vocalizing as he usually does. He is no longer connected to the IV drip, and Meade is holding him free of any sort of monitoring equipment. We are managing his pain through children's tylenol only, although we have morphine standing by if needed.
He had an X-ray earlier this evening that showed the position of the shunt. It truly does reach into the very center of his head. The valve sits under his scalp, and the drainage tubing traces down his neck before looping three times within his abdominal region. He will have a fast MRI tomorrow to set a baseline for the size of his ventricles.
We expect to be discharged from the hospital tomorrow afternoon after a final consultation with his surgeon.
We found Henry sleeping peacefully in the recovery room, possibly the most chaotic environment that we have ever experienced. As much as parents dislike surgeries, apparently the children undergoing them dislike them even more.
We have since been moved to a private room while we wait for Hank to wake up and for a bed in the neurological evaluation area to become available.
All of Henry's vital signs are strong, and his new scars will lend some street cred to his otherwise cherubic visage.
The past few weeks have been fairly calm for us. Henry has been getting lots of therapy, and he continues to make slow and steady progress on nearly all fronts. In addition to nursing, he is also eating baby food. While he took an instant liking to vegetables, especially squash, he is less certain of fruit. After a few consecutive attempts at a given fruit, though, he usually starts to like it. Here is a video of the second time we fed him bananas:
Our calm was disrupted this week. Five months ago, Henry's head circumference was measuring in the 5th percentile for his age group. This measurement has been steadily climbing since that time and is now in the 90th percentile. Increase in head circumference is driven by two factors: brain development or the pressure from trapped cerebral spinal fluid (a condition known as hydrocephalus). Given the nature of Henry's brain injury, the latter is more likely. However, Henry's head is not misshapen, his fontanelle is still soft, and his eye examination showed no abnormal pressure behind his eyes. Each of these factors is evidence against hydrocephalus.
To find out what is actually going on inside of Hank's head, our neurologist ordered an MRI. The MRI was performed at Evanston Hospital, where we spent most of the day waiting for Henry to wake up from sedation. By the time he awoke, the results had been read, and we were sent directly to Children's Memorial Hospital in Chicago for a consult with a pediatric neurosurgeon. The new MRI shows that Henry's ventricles are now much, much larger than they were back in December, the time of his second MRI. Ventricle size increase can be caused by either brain atrophy or fluid retention. Due to the dramatic increase in size, our neurosurgeon suspects that both factors are present.
A shunt is the usual apparatus for dealing with excess fluid. Because of the extremely swollen ventricles and brain matter of unknown integrity, we need to take extra precaution that Henry's brain does not collapse due to draining the fluid too quickly. To reduce the risk to Henry's brain, they are going to install an adjustable, high-pressure shunt. Once installed, the pressure point of the valve on the shunt can be adjusted by using a special magnet. (We won't be doing this at home.) Our goal will be to drain enough fluid from the brain so that the brain tissue has optimal space in which to operate but not so much that his brain collapses. He will be closely monitored by the surgeon at Children's Memorial Hospital. Children's has a special MRI for monitoring ventricle size that requires only about five minutes to capture the image and does not necessitate sedation.
We do not have a specific date yet, but we have been informed that Henry's surgery will take place late next week. Although this surgery is a big deal for us, it appears to be the simplest, most routine surgery that a pediatric neurosurgeon performs. Hank's surgeon assures us that he will be back to normal within a couple of days.
If Henry's brain is currently under stress from being compressed, we may observe an increase in his functional development once the pressure inside his head is normalized. Meade and I are resisting the urge to hope or speculate at this time. We want to get him safely through this surgery, then we'll see what unfolds.
OK, enough of the medical discussion. Henry continues to grow bigger and cuter...
Here he is trying to wake up from being sedated for the MRI:
Then at Children's Hospital for overnight observation:
Henry had his first haircut! Thanks, Big Don!
Here is our Big Guy practicing his sitting in the corner of the couch:
Here is some serious bed head:
Hank loves hanging out with his family.
Finally, we're not sure if this is a grumpy face or if he is just making fun of his dad...
