Henry Louis

Welcome to the Year 2012!

2012-01-17T20:45:00.005-06:00

We have had a whirlwind six months since Gus's arrival. While getting used to life as a family of four, we have had many adventures.

Aunt Peggy accompanied us on a trip to the Anat Baniel Method Center in San Rafael, California in September. We cannot thank her enough for all of her help. Henry had a week of intensive therapy with Anat Baniel and some other practitioners. Peggy and Gus became fast friends while Henry was otherwise occupied with his lessons. Henry responded positively to the lessons, and we hope to return to the center in 2012.

We live not far from the Glenview Public Library. Henry is the proud holder of his very own library card:

We also live near Wagner Farm. Here, Henry got to pet a cow:

Over Halloween weekend, Gus had his first long road trip to Pennsylvania. He also saw his first snow. He and Henry were subjected to costumes appropriately humiliating for their respective ages:

Here is Gus on Pap's lap:

We snapped a quick family portrait at Thanksgiving:

Henry turned 3 on November 26. We celebrated with his first real birthday party.

The most major event since our last post is definitely that Henry aged out of the Early Intervention program and officially became a schoolboy. His first day at the NSSED Pleasant Ridge Early Childhood Education room was Monday, November 28. He attends school daily from 9:15 - 2:45. He has a wonderful aide, Miss Carolyn, who rides the bus to and from school with him and is with him all day. Henry participates in Speech, Physical, Vision, and Occupational Therapy throughout the week with various therapists. His teacher, Mrs. Kay, along with Miss Carolyn, see to it that Henry is included in group time and play time with his classmates. He's even done a couple art projects (proudly displayed on the fridge). This has been a significant transition for all of us, but the reports are good, and we are excited that Henry has the opportunity to be with his peers and to experience school.

Sadly, Meade's uncle Toby Potter died in August after battling leukemia since last spring. We (Sean, Meade & Augie) were glad to be able to go to Portland shortly after his death to be with Meade's aunt Jenny and cousin Stu. Meade and Augie went back in December for the memorial service; it was good to be with all the family.

Juna

Jana & Lauren

Gus's first Christmas (and Henry's 4th!) was a lot of fun. As always there were many wonderful gifts for both boys and lots of family time.

Big Don & Holly

The last major bit of news to report on is that Henry had adductor myotomy surgery on December 28. Since Henry has throughout his life consistently pulled his legs inward, in adduction, the heads of the femurs are not seated properly in his hip joints. Therefore, his hip joints are at risk of becoming malformed. In Henry's case, the problem is much worse in the left hip than the right. This surgery helps weaken the adductor muscles, allowing greater range of motion from the hip joint. The idea is that, over time, with practice in weight-bearing activities such as standing and walking, the heads of the femurs will come into place. We have our fingers crossed for that; if this process is not successful, hip and leg reconstruction could be necessary.

After he had the surgery (while still under anesthesia), he had another ABR (auditory brainstem response) test. He had one in January 2010 which showed poor auditory processing in his brain. This one showed near-normal hearing in the left ear, but did not get interpretable results from the right ear. This result is consistent with the improvement we have noticed in Henry's responses to sound over the last several months/year.

Lastly, here are a few pictures of some of our recent visitors (as always, you can see more pictures on our Flickr site.) We love to have company and hope to see many of you in 2012. Happy New Year!

Bret

Melissa

Diana

Kate

Joan

Heather & Jason

Owen, Michelle & Diane

Nanna

Paul

Grammy & Nanna

Rob & Todd

Big Brother!

2011-08-04T20:09:00.005-05:00

Henry has a brand new little brother! August Nichol (AKA Gus, Augie) was born July 11, 2011, at 2:53 PM. He was 8 pounds 5 ounces and 20.5 inches long.

As you can see, he and Henry are already good pals.

I apologize for the brevity of this post, but you can find many other pictures of Henry and Gus on our Flickr site. Thanks to everyone for your well wishes! We are all happy to be a family of four.

First post of the year

2011-03-27T22:05:00.006-05:00

As March comes to a close, we are finally getting around to our first blog post of 2011. At least we kept it within the first quarter. Although our last post was in early December, we'll spare you the jarring site of Christmas trees and wrapping paper.

Henry has been happy and healthy except for a couple of colds and an ear infection that was discovered to be MRSA. Fortunately, the tubes in his ears relieve him of the pain most of us associate with childhood ear infections. When his doctor finally determined which antibiotics would be effective, the infection cleared within a day.

Henry's biggest news is that he is going to be a big brother. Meade is due July 4 and is doing great, of course. We don't know if we're having a boy or girl, but we're open to suggestions.

Although Henry continues to struggle in his high chair, we do have fun moments now and then. (Notice his new glasses.)

A piece of equipment that he much prefers is his bath chair.

During the Super Bowl, our devotion was not enough to inspire any life into the Steelers' usually-stellar defense.

Henry decided that he would rather nap than watch lackluster football.

Here are some photos taken on Christmas Day:

Finally, Henry has a new trick. He can now roll from his back to his side. He can only do this from right to left, and he will only do it when his parents are not watching. We owe many thanks to Jennie for capturing this video on her phone.

2nd Annual Hanksgiving

2010-12-21T20:51:00.002-06:00

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:

and sitting:

Here are some posed pictures intended for holiday cards.

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.

Not quite 2

2010-10-17T22:40:00.002-05:00

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

2010-07-25T16:09:00.003-05:00

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

2010-05-30T22:27:00.003-05:00

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

2010-04-04T21:18:00.002-05:00

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

2010-02-28T21:09:00.002-06:00

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!

Welcome to the year 2010!

2010-01-25T23:02:00.003-06:00

Much has happened since our last post. We had a peaceful Christmas here in Chicago, and Meade and I attended a wedding in Connecticut while Henry stayed at Big Don and Gramma Judy's.

The ABR Henry was supposed to have in December was canceled because he had some fluid in his left ear. This eventually led to his first ear infection and several sleepless nights, but he was able to get over that with the help of some antibiotics. Although the fluid persists, the ABR has been rescheduled for January 28. If the fluid is present on the morning of the procedure, we will have it addressed by an ear, nose and throat doctor and proceed with the test.

In early January, a checkup with Henry's neurosurgeon revealed that his shunt was not functioning correctly. He had surgery (known as a "shunt revision") to determine and address the cause of the failure. The surgeon discovered that the catheter into his ventricle was partially obstructed. He replaced the catheter, and a subsequent MRI indicated that the shunt is once again draining properly.

Henry is extremely lucky to have recently added massage therapy to his list of weekly appointments. He really enjoys Melissa's visits, as do Meade and I.

Here are some Christmas pictures:

Henry and Dad by the tree.

Playing dinosaurs with Charlie and Harry.

Christmas Eve with Lisa and DC...

and Natalie.

As usual, we have had some visitors.

Baby wrangling with Henry and Hilary.

Cousin Michele from North Carolina stopped by for dinner.

Jemmie, Christine, and James spent a weekend with us.

Henry's surgery was postponed by 8 hours, so we spent a lot of time waiting in the hospital.

The morning after the surgery, it was time to play with beads!

The first surgery left Henry with a small, tidy scar. The revision, on the other hand...

Don't worry it looks much better now. I'd take a picture of it, but he's asleep.

Henry and Meade spent a couple of days in Door County. Here he is taking a bottle from Diana.

Henry can't wait to get to Montana one day.

Finally, here is Henry working with his developmental vision therapist. She brought a vintage toy (1995) that he found quite interesting.

Happy Hanksgiving!

2009-12-01T21:41:00.004-06:00

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:

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:

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:

Nanna:

Cara and Joe:

Talisa and Jason:

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:

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

...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.

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

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.

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.

Henry got to play with his cousin Emika.

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

We hope everyone had a Happy Hanksgiving!

Trick or Treat

2009-11-04T21:35:00.004-06:00

October came and went in a blur of visitors and therapy appointments. Henry continues to be seizure-free, and he is making slow, steady progress with his various therapies.

In physical therapy, we are focusing on rolling over. If we initiate the roll through his shoulders, he can complete it with his legs and vice versa. Now he just needs to figure out how, when, and why to initiate the roll.

We now feed him a small amount of meltable solids (aka cheese puffs) each day. The primary goal is to teach him to chew solids. Becoming an obedient consumer of corn-based foods is secondary.

Henry's neurosurgeon confirmed that he believes the shunt is now functioning properly. We will measure its progress with a fast MRI on November 11.

Dori and Nate spent a weekend with us. It was our first chilly weekend of the year, but that didn't stop us from exploring Millennium Park:

For children, the month of October is filled with the anticipation of Halloween. Although Henry does not yet know the sweet taste of candy, he had three Halloween costumes from which to choose.

The tiger costume was a little too scary. We wouldn't want to frighten the neigborhood:

He wore his bear costume to a Halloween party with his cousins:

But for Halloween day, we chose the cutest (most humiliating) costume we could find:

The highlight of our month was a trip to Pennsylvania. Here is Henry hanging out with his great grandmother, Grammy:

His aunt Talisa:

and his Pap:

Here he is practicing head control:

And enjoying the great outdoors with his dad:

Henry's friend Owen came for a visit earlier this month. They had a great time playing, and Owen got to practice being a bully by stealing Henry's pacifier.

Henry gets to see his Gramma Judy on most weekends:

And he always has fun hanging out with his cousins. Here they are gathered around the newest addition:

Some days, Henry gets to spend a few hours with his good friend Luan:

Finally, here are a couple of pictures of Henry fresh out of the shower:

October already

2009-10-01T22:10:00.003-05:00

October finds us with much good news to report. Henry has been seizure-free since our last post. His latest MRI showed a decrease in ventricle size. This indicates that his shunt, now on its lowest-pressure setting, is finally functioning correctly.

He also has new glasses. Not only is he taking an increased interest in the world around him, but he looks like an older, more sophisticated baby.

We were very lucky to find a fantastic babysitter for Henry. Jennie spends two fun-filled days per week with Henry, and he adores her.

We have been encouraging Henry's love of nature with trips to the Chicago Botanic Garden.

Finally, Henry is starting to laugh for us. Meade is quite good at making him laugh while playing with his "squeaky mirror."

End of summer

2009-09-06T22:36:00.002-05:00

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.

Busy summer

2009-08-02T20:46:00.002-05:00

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.

Home again

2009-07-12T21:47:00.002-05:00

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.

Up and at 'em

2009-07-10T22:27:00.002-05:00

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.

Resting peacefully

2009-07-10T10:50:00.002-05:00

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.

Successful surgery

2009-07-10T09:07:00.002-05:00

We just chatted with the surgeon, and Henry's surgery was quick and uneventful. We will soon be headed to the recovery room to wait for him to awake.

Surgery scheduled

2009-07-07T09:33:00.002-05:00

Henry's surgery has been scheduled for this Friday morning, July 10. We will post an update after the surgery as soon as we are able.

MRI #3

2009-07-03T21:37:00.003-05:00

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...

Six months

2009-06-02T21:25:00.003-05:00

We can't believe that May is over already! Time has been flying by as we enjoy a schedule full of events...

We celebrated Meade's first Mother's Day with lots of family:

The following weekend, Henry and I had the house to ourselves as Meade went to see Gina graduate from Boston University. Although we missed her terribly, it was nice to have a break from all of her messes. While away, Meade stayed with our friends Adele and Bryan and their twin cuties, Max and Chloe:

Just when we thought we couldn't get any busier, we packed up and went to Pittsburgh to see Cara graduate from pharmacy school at Duquesne. We had a short-but-fun visit with my family:

On our return to Chicago, we stopped in Columbus to visit our good friends Peter, Sarah, and Ian:

We had quite a few visitors the following weekend, too. Our new friends Jack, Michelle, and Owen stopped by for breakfast on Saturday. Jack and Meade went through school together and were recently reconnected by one of our neighbors. These sorts of things happen a lot to people from Park Ridge.

Sunday's breakfast was with cousins Dave and Andrew, Michele, Melanie, and newly bipedal Charlotte.

So, that was May. Henry is now six months old and weighs over 18 pounds. His height is in the 97th percentile. He continues to make slow progress in controlling his head and trunk. Although his arms and hands seem to be relaxing nicely, he still has quite a bit of tension in his legs. His physiatrist is fairly certain that Henry has cerebral palsy, although she is not making predictions regarding the severity or any specific outcome. CP is a broad diagnosis, and nothing is changing with his therapies at this time.

After some initial false starts and setbacks, we finally are seeing some success with sleep training. His night sleep is still a bit short and easily interrupted, but his sleep is dramatically better than it was one month ago. We recommend Dr. Ferber's book to anyone experiencing difficulty with a child's sleep.

The best news is that we are getting better at making Henry smile. A baby's smile magically erases the symptoms of sleep deprivation. Henry loves to be jiggled, and he loves to play with his squeaky mirror. I am concluding this post with some attempts to capture Henry's smile on camera:

Door County

2009-05-07T20:56:00.002-05:00

Today, Henry saw a neurologist who specializes in sleep. She gave Meade and me a reasonable plan for helping him to learn to fall asleep without constant intervention from us. She felt that his poor nighttime sleeping habits are learned behaviors rather than a direct result of his brain injury. Wish us luck as we teach Henry how to fall asleep!

The extended chilly weather in Chicago gave us the opportunity to dress Henry in one of his several animal suits. On this particular occasion, we went for a walk around the park. He was quite a hit with the Mather girls' soccer team.

Meade and Judy took Henry on his first of many trips to Door County.

Music and Family

2009-04-27T22:09:00.002-05:00

We are resting after a busy and fun weekend of concerts and family. Nanna, Grammy, Aunt Talisa, and Uncle Jason visited from Pennsylvania. We spent the weekend hanging out and attending a couple of concerts that I played.

Like just about everyone else on this continent, Henry has been enjoying the brief glimpses of spring weather. He and his mom were out and about in their matching U of I gear:

Henry attended his first CSO kids' concert and got to hear his dad perform!

He also attended his first chamber music concert and was quite well-behaved.

But best of all, he got to spend quality time with family and friends.

2009-04-19T20:01:00.002-05:00

Hi everyone, it's Meade. Sean is playing a concert tonight so I thought I'd do a quick blog update.

There's not too much to report. Henry is still getting acclimated to his glasses, so we haven't noticed too much difference in his behavior. He does seem to be fixing on objects and faces better, however, and we did see our first real smiles! We are only sorry we didn't have our camera at the ready.

We are increasing our physical therapy appointments from 1x/week to 2x/week. Carol, our therapist, is terrific and Henry enjoys his visits with her.

We had a really fun Easter at my mom & dad's. Here are a few pictures. To see the rest, click here.

We also celebrated Sean's birthday yesterday. Happy birthday, Sean!

Happy Easter

2009-04-10T22:18:00.002-05:00

Henry has glasses! They are cute, but also a bit challenging to keep in place. Here is Henry hanging out with his new specs:

He also is getting teeth:

Here are some cute pictures of Henry hanging out on his mom's shoulder:

And here are some cute napping shots:

Glasses

2009-04-01T19:29:00.004-05:00

We took Henry to the Chicago Lighthouse this past Monday for a thorough evaluation of his eyes and vision. Because Henry cannot tell us what he sees, the eye doctor showed various objects to him while observing his responses. Henry performed for the doctor as he usually does for us: occasionally tracking objects back forth, never tracking them up and down. One test he was able to do repeatedly demonstrated that he has at least 20/400 vision.

Basically, the tests of his vision simply confirmed what Meade and I have known for quite some time – he sees, but not well. This doctor's inspection of his eyes led her to agree with our ophthalmologist that Henry is very near sighted. We ordered glasses for him. These should arrive within two weeks.

The glasses should help his vision, but we do not know to what extent. The glasses will enable his eyes to provide a sharp image, but that image needs to be transported by his optic nerves and interpreted by his brain. The facility of the nerves and brain is not yet known. Our hope is that the glasses will improve his vision and that improved vision will increase his motivation to control his head and observe his world.

Here are a couple of pictures of Henry with his cousins:

Here is Henry all dressed up for Wesley and Natalie's wedding:

And here he is all dressed to go outside and enjoy the Spring weather:

Henry's friend Hilary came to visit, but Henry was napping:

Finally, here is Henry with some of his many adult friends:

EEG #7

2009-03-21T23:25:00.002-05:00

Our last post was much too long ago, so I will do my best to fill in the gaps and post lots of pictures.

Henry's seventh EEG showed no seizures. Although this was fantastic news, the fact that we had witnessed six seizures in the hours leading up to the test tainted any sense of relief. We did not witness any seizures during the EEG, and our neurologist assured us that the coalescence of electrographic and observed seizures is a positive sign, albeit a nerve-racking one. We increased the dose of his seizure medicine (Keppra) by 25%, and we have not seen a seizure since. Henry will likely be on this medicine until at least his first birthday.

Henry continues to receive frequent therapy and checkups. He weighed 15 pounds 3 ounces at his pediatric appointment last Friday, and he is 27.5 inches long. This puts him in the 99% for length. He is about to grow out of his carseat! His head circumference is in the 25%, so our concern about that has diminished greatly. (It had previously measured in the 5%.)

Henry is now breastfeeding for every meal. We are making arrangements to return/donate all of our tube-feeding supplies!

Henry's next major appointment is March 30 with the Chicago Lighthouse. Henry may soon be donning spectacles.

Although he doesn't quite grin ear-to-ear, Henry does reward us with occasional half smiles.

With a little help, he will sometimes suck his own thumb, giving our fingers a much-needed break.

Here are some pics from playtime:

And some shots from nap time:

And here are some of Henry's visitors:

Road trip!

2009-03-08T20:51:00.002-05:00

Eyes

Henry's ophthalmologist had plenty of news for us. Henry's left fovea is healing very cleanly. In fact, his doctor stated that he would not have noticed any problem with the fovea if he had not specifically been looking for it. We will not know conclusively that the fovea is normal until Henry is old enough to cover the opposite eye and read a vision chart, but we have every reason to believe that it will be.

We also learned that Henry is extremely nearsighted. Ophthalmologists have the ability to use a beam of light and various lenses to determine a baby's eyesight even before he or she can read. Since Henry had been treated with preparatory eye drops for examining his fovea, not for a vision assessment, our ophthalmologist conceded that his exam may not have been very accurate. However, he expects that we will be outfitting Henry with glasses in the near future. We are scheduled to have a full vision assessment at The Chicago Lighthouse on March 30. You may be seeing pictures of Henry in his new specs soon.

Feeding

We removed Henry's feeding tube last weekend, and he has been 100% bottle feeding for the past eight days. With reduced medication in his system, he always wakes for his meals. He weighed in at 14 pounds 3 ounces at the pediatrician on Friday. He is 25.5 inches tall. We hope that our NG tube days are over.

Seizures/medication

Henry is now phenobarb free! As some of his therapists predicted, he is quite a different baby. In addition to always waking for feedings, he is also much more vocal now. He even cries, but only for one breath at a time. When he runs out of air, he stops crying.

Unfortunately, we have been seeing more seizures lately. Each lasts between five to twenty seconds, and he seems perfectly fine as soon as the seizure ends. They primarily seem to happen during the transition from sleep to awake. He has an EEG tomorrow afternoon. We expect that his neurologist will recommend a slight increase to his Keppra dosage.

Road trip!

Last weekend, Henry made his first trip to see his family in Pennsylvania. Henry is a good traveler and was the life of the party all weekend long. We have posted many photos of our adventure here.

EEG #6

2009-02-22T13:38:00.002-06:00

In the days leading up to Henry's sixth EEG, he became increasingly disinterested in eating. We were disappointed to have to reinsert the feeding tube after not using it for five days. Then, just as we were getting used to seeing Henry with the feeding tube again, he had a brief seizure, the first we have seen since Christmas Day. It only lasted about five seconds, but we were nevertheless concerned. Fortunately, his EEG and appointment with the neurologist were already scheduled for the following day.

This EEG was much improved over number five. During a two-hour observation period, he had six seizures in the left hemisphere of his brain and none in the right. Although it was not the best possible news (seizure free), our neurologist was encouraged by his progress and the efficacy of the new medicine.

Our neurologist also had an explanation for his disinterest in eating: too much medicine. He was simply too dopey to eat. We have begun to wean him of phenobarbital, something we have been wanting to do for a long time. Henry should be phenobarb-free in about a week and a half. In the few days since we reduced his dose, he has regained much of his interest in eating and is becoming increasingly vocal. We have even seen a few pouts.

We decided to take a few pictures at Henry's EEG. First, they put wires all over his scalp. Each gauze patch on Henry's head has a single wire lead and a big glob of paste under it.

The wires connect to a punch-down board that has a silhouette of an arial view of a head on it.

To hold everything in place, they wrap his head in a bandage. As you can see, he sleeps through the test.

Many people have complimented Henry on his eyelashes. They are long.

Very long.

Henry gets plenty of tummy time.

Here are some other photos of Henry and his friends:

Going to work

2009-02-15T10:04:00.002-06:00

Here are a couple more pictures from last week - Henry's first visits to his parents' offices!

Happy Valentine's Day

2009-02-14T22:04:00.002-06:00

Henry has begun to vocalize. His sounds aren't predictable and do not always have a clear purpose, but we are always happy to hear his voice. He has had a couple of cries, though these only last for a few seconds.

Henry has been on full oral feeds for five days (no NG tube!). We're watching his weight and tracking his intake very carefully. If we need to supplement his oral feeds, we will have to reinsert the tube. However, we're hopeful that we will be tube-free from now on.

Henry had lots of appointments this week, including with a physiatrist at Rehabilitation Institute of Chicago. She had many positive things to say about Henry. She was happy that he moves his fingers and toes independently, is able to breast feed, and has a very robust appearance. Her main concern is regarding the trouble that he often has tracking objects. She had a toy with flashing lights and lots of noise, and Henry didn't even seem to notice it. She assured us that we are getting the proper therapy for him and that drastic measures of any sort are not currently warranted. At her suggestion, we may seek a specialist to teach us new ways to stimulate his vision.

Henry has a big appointment coming up on Tuesday. He will endure his sixth EEG (other than having goo smeared all over his head, the test is not actually so bad). We hope that this EEG will be clearer and that we can then begin to wean him from the phenobarbital.

We got a new camera yesterday, so hopefully the indoor shots of Henry will be a bit sharper.

Henry loves his tummy time:

He also loves hanging out with friends and family:

Henry has lots of toys:

Henry is very lucky to have such a beautiful Mom:

Diaper changes are so much fun:

And here are some other random shots of Henry:

Super Bowl, etc...

2009-02-08T21:36:00.002-06:00

Henry has had two major projects since our last post. First, he cheered the Steelers to victory at the Super Bowl:

More importantly, he has been making great strides in eating orally. As he adjusts to his new seizure medication, he occasionally has extended sleep periods. We sometimes decide to use his NG tube to feed him during one of these mega-naps just to make sure that he is getting enough calories to sustain his growth. Otherwise, he is becoming expert at both bottle and breast.

Although he is still fairly floppy through his torso, he is gaining strength through his neck and shoulders. He is becoming increasingly adept at picking up his head during tummy time, and he even lifts his shoulders off of the floor at times. We are also noticing that his visual tracking is improving, and he occasionally reaches out for objects that pique his interest.

We believe that we are seeing the beginning of a smile after a big meal. I'll try to capture a few of these for our next post. We still are waiting for him to begin to imitate us in any way.

We have found two things that Henry loves: sucking on our fingers and poetry. Whether it's Dr. Seuss or Coleridge, Henry loves to hear us read or recite verse.

Henry's Aunt Cara and Uncle Joey visited him this weekend. Here are some pictures of their visit which included Henry's first trips to Millenium Park and Margie's Candies:

Henry has yet another busy week. He has a weigh-in appointment and occupational therapy on Monday, physical therapist on Tuesday, and an appointment at the Rehabilitation Institute of Chicago with a physiatrist on Thursday. He has a formal pediatric appointment on Friday.

Henry entertained many guests since our last post:

EEG Number 5

2009-01-29T21:47:00.002-06:00

Today was Henry's first neurological appointment since leaving the hospital. After a steady stream of good news over the past couple of weeks, today served as an unwanted reminder that Henry does indeed have a serious brain injury.

He began this morning with an EEG at Evanston Hospital, followed by a visit with his neurologist. Although Henry is not exhibiting seizures, during this 90 minute test his brain demonstrated electrographic seizures nearly half of the time.

The neurologist does not want to continue his phenobarbital, so he is recommending that we move Henry to Keppra. Keppra is not well-studied in infants, but has been proven to be effective and "safe" in older children. Our course of action is to begin Henry on Keppra and have another EEG in 2-3 weeks. If this EEG is improved, we will then stop phenobarb. Henry would be solely on Keppra, which we would reevaluate after a couple of months. If Keppra is not effective, we move to plan C. We're not sure what plan C is just yet.

Henry's head size is not increasing quickly enough, indicating that his brain is not developing properly. While we were once concerned that his head might be getting too large, we are now concerned that it is too small. Unfortunately, we can do nothing to assist with this. We'll just continue stimulating him as much as possible and monitor his head size as one indicator of brain development.

OK, time for some good news. After just one week, Henry is taking about half of his daily milk volume via a bottle. We begin each feeding with the bottle, and when he finally loses interest, we feed him the remainder through his NG tube. We are all thrilled that he is doing so well.

Last weekend, Henry attended his first organ and brass concert. Here we are getting ready for the show:

And here are some visitors:

Bottle!

2009-01-22T19:33:00.002-06:00

Today was Henry's video swallow with Dr. Arvedson in Milwaukee. We spent the last week practicing for this test, so Henry felt fully prepared. We were well rested after spending the night with our friends Vince and Jen (and Olivia and Cece).

Henry was a star during the test. He drank the barium and milk mixture from a spoon as well as from a bottle. When he initially took the bottle, he performed a series of eight vigorous one-to-one suck-swallow actions that clearly demonstrated that he is both swallowing safely and ready to begin oral feeds. Dr. Arvedson described the test as "very, very encouraging." Basically, he is swallowing normally with no evidence of aspiration, and he has the necessary coordination and willingness to feed orally.

We now start the process of transitioning to oral feeds. We begin each feeding session with five minutes of bottle (or breast) time. Whatever he doesn't finish during this session, we feed to him through his NG tube. When he is able to feed himself for the entire five minutes, we will lengthen that period. Eventually, he will feed 100% orally, and we will remove the NG tube permanently.

Dr. Arvedson estimated that this process will take anywhere from four weeks to several months. Based on his performance today, she estimated that he would initially be comfortable taking 5 - 15 mL of milk. At his first feeding this afternoon, Henry sucked down 30 mL of milk! At his second feeding, he took 25 more. He seems to crave his milk once he gets started, and we have to be careful that he doesn't overwhelm his ability to swallow. He needs to work on his pacing.

We also met our in-home speech therapist today. She was able to watch Henry's first bottle feeding and recommend that we switch to a slow-flow bottle nipple. We are happy to be working with her.

We began Henry's occupational therapy earlier this week, and his physical therapy starts next week. All together, we will have three therapists working with Henry in our home each week.

Our next big test is an EEG and neurology visit next Thursday. If the EEG shows no seizure activity, we will be able to wean Henry from the phenobarbital. We remain optimistic that this will be the case.

Enjoy a video of Henry taking his first bottle:

Here are some other photos from Henry's week:

Change to swallow study

2009-01-16T23:37:00.002-06:00

Thanks to a referral from our friend Vince, we were able to schedule a video swallow test with the woman who wrote the book on pediatric swallowing. She also published an article in Nature that is easier to read than the Google book. We have canceled our appointment at Evanston hospital and will be headed to Milwaukee Children's Hospital on Thursday.

In preparation for the test, we have been giving Henry drops of milk on a spoon. He loves the taste of milk and seems to be swallowing very well. Starting tomorrow, we'll try a couple of drops of milk from a bottle nipple. Although these experiments are fun for Henry and us, the real purpose is to ensure that the video swallow test will be as accurate and as brief as possible.

Yesterday, Henry visited the ophthalmologist. His right eye is now clear of hemorrhaging, and his left eye is nearly clear. The spot on his fovea is still dark, but it is lighter than it used to be and so far shows to sign of scarring. We're hopeful that this trend will continue with our next visit in six weeks.

At the pediatrician's office today, Henry weighed one ounce less than twelve pounds and was two feet tall. This puts him in the seventy-second percentile for weight and ninety-second percentile for height. He received a round of vaccines that made him scream a little. We are rare parents in that we love to hear our child scream.

Here are some photos of Henry and guests

And here is a video of Henry taking milk from a spoon:

Another big day

2009-01-12T20:35:00.002-06:00

After sleeping until 4 AM, Henry was ready for a big day. He got one.

Henry met with his original speech pathologist, and she was quite impressed with his progress. Not only is his sucking much improved, but he is now clearly gagging! She put some drops of water in his mouth, and he was able to swallow them without choking or coughing. The next step towards eating is for him to have a video swallow. We have one scheduled for Wednesday, January 21, at the Evanston Hospital. Hopefully, we'll soon be on our way to oral feeds!

The CFC program has located three therapists for Henry, and it appears that his sessions will begin next week. His occupational therapist has 30 years of experience, is a specialist in children with brain injuries, and is certified in sensory integration. He also has a physical therapist and a speech pathologist who is a feeding specialist. We have not yet spoken to those two, but they come highly recommended from the evaluation team.

Later in the afternoon, from a practitioner of Child'Space, we learned some new ways to play with Henry while teaching him about his body.

Later this week, Henry is headed to the pediatrician and to a follow-up appointment with the opthamologist. At the latter appointment, we'll be checking up on the healing of the hemorrhage on his left fovea.

In other good news, our friend Kate is visiting from Montana:

Moving along

2009-01-10T22:18:00.002-06:00

Henry has had an eventful week. On Friday, he gave us three short, loud baby shouts of "AAAA!" We have heard these from him on only two other occasions. This was the first time that we heard multiples. Now, if we can only figure out what they mean...

We started letting Henry taste milk by dipping our fingers in it and letting him suck while he is feeding. He loves the taste of milk. Not only are we glad to be able to give him something that he enjoys, but it also seems to be an indicator that he is ready for oral feeds. We have a feeding appointment on Monday with the speech pathologist that worked with Henry in the hospital. We're still waiting for the CFC visits to start.

Today, Henry was following his squeaky moose toy with his head (not just his eyes) in both directions. We have to move slowly and restart the process a few times, but we're excited about this new development.

Also coming up on Monday, we're meeting with a Feldenkrais practitioner to learn some new exercises for building Henry's skeletal support and development of his coordination.

Here are some pics:

Therapists

2009-01-05T21:39:00.003-06:00

We were concerned that after he pulled another all-nighter, Henry would be too tired to perform for the therapists. Henry found his second wind, though, and put on quite a show for his visitors.

This morning's visitors were organized by Child and Family Connections and were simply evaluating Henry to make a recommendation for ongoing therapy. They recommended weekly visits from a speech pathologist and physical therapist and biweekly visits from an occupational therapist. The developmental therapist will see him again in six months.

After watching and manipulating Henry, the therapists concluded that his development is within the normal range for a one-month old baby. On the downside, his muscle tone is a bit weak, and he has difficulty tracking moving objects with his eyes. His tone is possibly attributable to his stay in the ICU, and his eye tracking difficulties are most likely due to his nystagmus. While his tone is something that we can work to improve, we have no choice but to wait for his cerebellum to calm his quivering eyes.

The most interesting part of the visit was the commentary from the speech pathologist. She was surprised that Evanston Hospital would let such a trivial thing as a gag reflex prevent Henry from eating. She informed us that many children learn to eat normally without a gag reflex and encouraged us to have a video swallow performed. Basically, if they can determine that the gag reflex is indeed the only factor preventing Henry from eating, we should be able to put him on a program to get past this difficulty.

As you can imagine, we are now working to get Henry on oral feeds as soon as possible. While CFC verifies our insurance and locates our therapists, we will likely wait at least two weeks to see a speech pathologist through this program. We have contacted a couple of other options to have the swallow study performed sooner.

And just when we thought our day could not get more interesting...bathtime! Gramma Judy played a key role in bathtime festivities. This marked Henry's first bath since his umbilical cord dropped, thus the first time that we could truly douse him with water. Meade and Judy maintain that he responded with a smile, but I did not witness that myself. I did witness the aftermath of a tremendous poop which quite soiled his bath water. From full bath to sponge bath Hank did go. However, he wasn't quite finished. No sooner did Meade diaper and clothe him than did he fill his new diaper with more poop. We had a slight scare as we were changing this diaper, because it appeared that he had quite suddenly broken out in a sweat. He didn't feel warm, what was happening? His head and face were soaked! Then we realized that there was a trail of "sweat" that led from his head down to his newly-removed diaper. Oh no! Hank topped off bathtime with a golden shower! Sponge bath number two was followed by a lightning quick diapering.

Here are some photos from bathtime:

and playtime:

Some visitors:

Happy New Year!

2009-01-03T21:35:00.002-06:00

2009 is off to a good start. Henry is still working on his New Year's resolutions, but they will definitely include sleeping through the night and growing.

At the pediatrician on Friday, Henry weighed 10 lbs 15 oz, putting him in the 70th percentile for weight. Our next big day is Monday, when we will be visited by a speech pathologist, physical therapist, occupational therapist, developmental therapist, and case coordinator all at the same time. We are hopeful that this visit will begin our work towards teaching Henry to eat.

Henry has many adorable outfits. Here is Henry as a colorful cowboy:

a candy cane:

ready to go out:

and covered in elephants:

Henry makes a face that we call "the choirboy." We hope you enjoy it as much as we do:

Finally, here are some of the lucky people that got to hold Henry this past week:

Post Christmas

2008-12-27T21:50:00.002-06:00

We had a wonderful Christmas.

We started at home opening the presents under our own tree.

Then we took Henry to watch his cousins open their presents. They are a bit more aggressive with the unwrapping than Henry is. When DC opened the Hot Wheels set pictured below, he exclaimed, "Cool, I saw this on TV, and I wanted it!"

Henry is getting over a cold right now, so we have become expert at removing mucus from infant nostrils. Send me a note if you want some pointers. The two necessary components are moisture and suction.

Hank is continuing to enjoy a stream of visitors and frequent, long naps. Except for his weekly pediatric visit, we have no medical appointments in the upcoming week. Although we want him to meet with a speech pathologist as soon as possible, this seems unlikely to occur before our currently-scheduled appointment on January 5.

Enjoy some pictures of a few of Henry's adorable holiday outfits:

First weekend

2008-12-23T23:56:00.002-06:00

We had a great weekend. Henry continues to enjoy being at home, and Meade and I continue to get better at being parents. At this rate, we should have parenting perfected in a matter of decades.

Henry had two appointments today: one with the opthamologist and one with the pediatrician. The opthamologist appointment was disheartening in that the spot on his left fovea remains dark. This means that it is healing slowly, indicating that scarring is likely. Depending upon the degree of scarring, the center of his vision in the left eye may be affected in a way that could not be helped with corrective lenses. Once again, this is not something that can be fixed with medical intervention. We simply have to let Henry's body do its work. We have a followup appointment in three weeks to monitor this situation.

I am cautiously offering forth this next bit of good news. The pediatrician used a tongue depressor to cause what appeared to all of us to be a strong gag reflex followed by a healthy cough. Keep in mind that our pediatrician is not trained to delve into Henry's throat with her finger to verify that the full reflex is operational. However, she identified his reaction as a gag, and Meade and I agreed that it was strongest response to such stimuli that we have observed. Suddenly, the January 5 visit from a speech pathologist seems too far away. We will scour Chicago for a therapist working on Christmas Eve.

OK, time for photos.

How could the Steelers lose with such a cute fan?

Cookie party

Looking cute

Family pictures

Visitors

First days at home

2008-12-20T21:51:00.002-06:00

We are settling into a routine at home with Henry. We barely notice the leads for his sleep monitor as we change and swaddle him.

We are learning plenty about Henry. His favorite time to poop is immediately after a diaper change, and his favorite time of day (for both being awake and sporadic pooping) is from 2 -3 AM. Perhaps we're being optimistic, but we think that we occasionally see the first traces of a smile. Today, his aunt Jenny was able to get him to follow a toy with his eyes as she moved it back and forth in front of him. We believe that this is the first time that he has focused on something other than a face. Noisy faces are still his favorite.

Tomorrow, Henry will take his first trip to Gramma's house for a cookie party.

Sleeping soundly

When Henry isn't asleep, he enjoys Sweatin' to the Oldies

Closeups

More than anything, Hank loves to be held

2008-12-20T08:56:00.002-06:00

December 20, '08

Hi all, Meade here. This will be quick, Sean will post pictures later. Sorry we have been neglecting the blog the last couple days. Turns out we're on call 24/7 now that we're home.

We are all so glad to be home! We are figuring out our routines - and Sean & I are trying to sneak in sleep when we can. It feels great to be in our own house.

Hank had his first pediatrician appointment yesterday, so he got to experience his first true Chicago snowstorm, also. He is already 9lb 15oz! Guess milk really does do the body good. His doctor gave him a good report; we will go back to see her next Tuesday & then every week for a few weeks so she can get to know him well.

My aunt Jenny is here to help out and hang out for a few days, which is really nice. She is doing laundry & learning about feeding tubes & cloth diapers - and keeping us company.

I'm sure there is more to report - look for Sean's post later on today. Just didn't want to ignore our readers too much longer!

Day 22

2008-12-17T21:52:00.002-06:00

Henry is home!

We spent the morning at the hospital meeting with the neurologist, finalizing the details of Henry's discharge, and saying goodbye to many friends at Evanston Hospital. During our three weeks in the Infant Special Care Unit, we came to put our trust in more than two dozen nurses in addition to the doctors, therapists, counselors, and concierges. As happy as we were to bring Hank home, we had a few teary goodbyes. Meade and I would like to send good luck to the wonderful residents from Children's Memorial Hospital as they finish their rotation with the ISCU, and we would like to thank the nursing staff for their care and compassion. We were sent away with a few lovely gifts that will remind us of the wonderful people at Evanston Hospital.

Some of our friends from Evanston Hospital:

We arrived at home around 2 PM and immediately began our routine. We switched Henry to cloth diapers (with a few hijinks), and, thanks to help from Gramma Judy, we have sorted and stored all of Henry's medical supplies. We have a feeding area, a changing area, and a sleeping area. Normalcy, here we come.

Tomorrow, we are meeting with a coordinator from Child and Family Connections. A home nurse will also be stopping by to make sure that things are going OK for us. Both of these appointments will be at our home, so we intend to revel in the luxury of not driving.

Since Hank is now safe and sound at home with us, we may not be updating the blog on a daily basis. If you click "follow this blog" at the bottom of this page, you can follow the instructions to be notified anytime that we post a new update. I most likely will post again tomorrow.

From our last day at the hospital

Ready to go

Finally home

Day 21

2008-12-16T22:42:00.002-06:00

Today was crazy. We received instruction in speech therapy, occupational therapy, and how to use the home monitoring equipment. We also met with Henry's neurologist and opthamologist, the discharge coordinator, and our social worker. Meade, Henry, and I were zonked by the end of the day.

The opthamologist informed us that Henry has some hemorrhaging in the back of his eyes, including on the fovea of his left eye. The hemorrhaging will likely resolve itself, but it may leave behind some scarring that would interfere with normal vision. This condition hasn't made it to the top of our list of worries, but we have a followup appointment scheduled for next week.

Henry is coming home tomorrow! We are thrilled that this is finally happening. We hope to quickly achieve some element of normalcy and routine. The Evanston Hospital, while nice, will not be missed. The staff at the hospital has been working closely with us to ensure that we are ready for this moment. I speak for both of us when I say that we are prepared to manage his feeding tube and the scheduling of healthcare professionals.

More than anything, we want to feel like parents and act like a family. We will finally have this opportunity on Henry's three-week birthday.

Day 20

2008-12-15T22:38:00.002-06:00

Henry passed his hearing screening last night. The neonatologist was happy about this – auditory processing could have been affected by his injury.

We were all business today. Henry had appointments with the speech and occupational therapists and the developmental psychologist while we worked to rectify insurance issues and set up pediatric appointments.

Tomorrow will be even busier. Henry will have an eye exam, a visit with the neurologist, and final sessions with the speech and occupational therapists. Meade and I (and probably Meade's parents) will undergo training to use the apnea monitor. We also need to learn how to accurately measure Henry's seizure medicine. After tomorrow, we should just about be to the bottom of the TODO list for bringing the little guy home.

At the end of the day, Gramma Judy practiced inserting his feeding tube, and Uncle Ross got to hold him for the first time (after many visits to look through the bars of baby jail).

We also bid farewell to one of our favorite nurses, Vicki. She has been Henry's primary daytime nurse, and she is getting a couple of days off.

Day 19

2008-12-14T22:43:00.002-06:00

We had a quiet day at the hospital in preparation for a busy week. Friends Eric and Christina Mai brought us lunch.

Henry passed his car seat test:

He had a lot of fun at bath time:

Big Don learned how to insert his feeding tube, giving us another chance to see his face without tape:

We still appear to be on target for bringing Henry home on Wednesday. This requires that within the next two days we meet with his various therapists, receive apnea monitor and CPR training, obtain all of the supplies that we'll need in order to feed him at home, meet with the neurologist, setup an appointment with his pediatrician, and go through the discharge process at the Infant Special Care Unit. We'll be busy.

In the meantime, Henry continues to be more alert and gain better control of his head movements. Tummy time is yielding huge gains. We'll probably get him the perfect pushup for his first Christmas. He is also learning all of the words to "Hole in the Bucket."

Here are some other photos from today:

Day 18

2008-12-13T23:10:00.003-06:00

Weekends at the hospital tend to be quiet. The parking garage is empty (and free) and all of the specialists are at home. Henry endured poking and prodding only from his parents. We're working on building his head control through tummy time and upright positions. Each day gets a little better.

Henry is beginning to crave sucking. He seems to understand some connection between feeding and sucking, because shortly after feeding, he really wants something in his mouth. Last evening, he latched on to my finger for over half an hour. I was beginning to worry about losing a nail.

In addition to Meade's family, we enjoyed visits from friends Warren, Cate, and Andrew as well as Bill and Leoni. Meade and I took a little break from the hospital to celebrate Wes's 30th birthday observed. We cannot wait to bring Henry to a family party so that he can meet his cousins and join in the fray. We will not have to wait long – there is a cookie decorating party next weekend.

Feeding tube practice

With Mom

With Big Don

With Dad

Day 17

2008-12-12T23:09:00.002-06:00

Today Henry enjoyed the last day of his Nanna and Pap's visit. He'll miss them terribly, but we're already beginning to plan the next trip.

The physical therapist began teaching us how to work with Henry to develop and maintain good muscle tone. He has already begun his tummy time regimen, and we expect that he'll be doing pushups (regular and diamond) soon.

Much of today was spent continuing our preparations for bringing him home. We spoke to pediatricians, therapists, our neurologist, a social worker, and an insurance administrator in addition to our continued work with Henry's nurses to learn how to care for him properly.

Henry is continuing to improve his sucking and the use of his neck and hands.

A few photos from today:

Day 16

2008-12-11T22:47:00.002-06:00

Today we began preparing to bring Henry home. Henry will most likely be discharged this Wednesday. Our preparation primarily involves learning how to manage his feeding tube and apnea monitor. The monitor is not a big deal, just a strap around his chest to monitor breathing and heart rate. He'll only need to wear it when he is eating or out of our sight.

Inserting, removing, and checking the placement of the feeding tube, while not fun, is also not terribly difficult. We have been participating in feeding him for a couple of weeks, and Meade inserted a new feeding tube today. She did a great job. The insertion doesn't seem to hurt him, but it does elicit a series of coughs and sneezes. We find some comfort in any reaction that he has, even if it signals displeasure. The best part of removing the feeding tube is that we get to see Henry's unobstructed beautiful face.

We are also now quite busy trying to arrange for the care that he needs after we leave the hospital. Many people are willing to help us with certain aspects of this, but we need to assemble the master plan ourselves.

Henry had a great day. He enjoyed getting to spend a few quiet hours in the arms of his grandparents.

Photos from today

Day 15

2008-12-10T22:07:00.002-06:00

While today was a good day for Henry, it was a devastating one for us. Henry's MRI from Monday night revealed that he has diffuse leukomalacia. The damage appears to be scattered throughout the white and gray matter of his brain. The neurologist described the severity of this damage as "moderate."

The swelling in his brain masked this damage during the first MRI. Since then, the blood that was trapped in his ventricles has been clearing, and a more realistic picture of the condition of his brain has presented itself. Unfortunately, the blood in his ventricles has become the least of our worries.

The doctors believe that his injury was sustained one or two days prior to birth and was likely caused by either a temporary constriction of the umbilical cord or some interruption to blood flow through the placenta. They make this estimate based upon three factors:

1. The seizures and apnea began almost immediately after birth. Such symptoms usually require hours or days to manifest.

2. His blood acidity was normal at birth. This would have required time to normalize after an incident of low blood flow.

3. The damage is spread throughout his brain. This is consistent with a full constriction of blood rather than a localized incident.

Only time will tell us how Henry's development will be impacted by this condition.

Henry continues to work with therapists to improve his eating, coordination, and focus. We are beginning to make arrangements for the therapy that he will need after we bring him home. The nursing staff has begun training us to manage his feeding tube and monitoring equipment so that we can bring him home soon.

Photos from today

Day 14

2008-12-09T22:15:00.002-06:00

We arrived this morning to find Henry wrapped in a Bears blanket.

He had the MRI overnight, and we were told that they were able to get good images. Unfortunately, we have to wait until our neurologist returns tomorrow to find out what those images show. A "good image" means a clear picture and does not imply anything good or bad about the findings held therein.

Henry did have appointments with both the occupational therapist and the speech pathologist. They agree that he is making improvements but not yet gagging. We're still waiting for that elusive reflex. He does now have a nice cough reflex. Those of us untrained in such matters may even mistake the cough for a gag, but functionally they are distinct.

Henry did not receive a spinal tap today. The doctors postponed it until our neurologist is able to read the MRI. We'll know more tomorrow.

For the first time, we were able to remove Henry from the nursery! Because his vital signs have been stable for many days, we disconnected him from all monitoring equipment and wheeled him into a private room where he was promptly taken into the arms of his grandparents. Meade and I were thrilled to be able share him with family and relieved to know that his nurses and doctors trust his little body to keep his systems going.

We also got to give him a bath this evening. As the doctors would say, "He tolerated it well." We had a blast.

We had a good day with Henry and are cautiously looking forward to learning the result of his MRI tomorrow.

Thanks to Marcia and Judy for lunch and dessert

Grandparents

Henry