Monday, October 24, 2016

Why Boston?

Some people ask us if travelling to Boston regularly for Owen's eye pressure checks is hard. It must be a pain to load everything up, get in the van, drive 174 miles to Boston for a doctor's appointment. Right?


Driving to Boston for an appointment with Dr. Walton has never been, or never will be, difficult or a burden. It's our thing.

Autumn 2007. Owen is a couple months old. He has had two surgeries on his right eye, both when he was 3 weeks old. He was born with pediatric glaucoma, and regular doctor visits and eye pressure checks are necessary to preserve his vision. Pressure goes up, surgery is done.

But why Boston? Why Dr. Walton? Can't anyone in Albany do the pressure checks?

One time in October or early November of 2007, we started to notice a little more cloudiness in Owen's eye, a sign that eye pressure may be rising. We called Dr. Walton. What do we do? For our conviencence we decide to make an appointment with the eye doctor here in town who initially diagnosed Owen with pediatric glaucoma.

He's a nice doctor, and I'm sure he does what needs to be done to help children with eye problems. We arrive at his office, and check in. We wait a bit in the same waiting room where we were told that Owen would be blind, and then we are brought to an exam room. A nurse comes in with some papers and asks us some questions.

Yes. Pediatric glaucoma. We see Dr. Walton in Boston. Owen had an Ahmed valve implant on September 11th, and a reformation of the anterior chamber on September 14th.

She takes notes.

We just noticed that his eye looks a bit cloudy and we were concerned. Right. We typically see Dr. Walton, but we figured we would be seen here in Albany for convinence.

Nurse leaves, and we wait.

Enter medical student. He takes notes.

Yes. Pediatric glaucoma. We see Dr. Walton in Boston. Owen had an Ahmed valve implant on September 11th, and a reformation of the anterior chamber on September 14th. We just noticed that his eye looks a bit cloudy and we were concerned. Right. We typically see Dr. Walton, but we figured we would be seen here in Albany for convinence.

He's a nice guy, and will probably make a good doctor some day. Just not today. He performs a cursory examination.

The doctor enters. We tell him our story. He exams Owen's eye again. The glaucoma doctor from an office upstairs enters and checks our son too. Pressure check finally occurs. Things are ok. Keep an eye on things, and follow up with Dr. Walton.

It took several different levels of medical professionals to get the information we needed. Several different people, all recording our same story.

We vow never to have another doctor examine our son again, unless under the guidence of Dr. Walton.

An office visit with Dr. Walton is something special. You enter the office to the tiny waiting room, greeted by the crayons on the small table, the pile of New England-themed books, and the countless photos on the walls. Sometimes Dr. Walton is at the desk waiting. Sometimes he is in the exam area, and you simply know to sit and wait. We often wait with other families who are going through the same thing that we are. Glaucoma, cataracts, blindness. Children who are wearing patches and glasses and doing kid things.

There's something different about this office. No multi-level practitioners running around. No receptionist. Just you, some other families, and Dr. Walton. And during the examiniation, you know that you are watching a master at work. He moves swiftly and with confidence. He sometimes stammers when he talks, but you know right away that he knows what the deal is. He speaks as if you are family, and he cares for his patients as if he was caring for his own children.

During one office visit, when Dr. Walton first met our 2 year-old Josie, he took some time to check her eyes, just to be sure. When Leah, our baby, came along when Owen was 3, he checked her eyes too. He just cares for kids and their families.

So, we have our doctor in Boston, we have our routine, and we have our little family with the son who was born with cloudy eyes. Preserving his vision takes some effort, but it never is a burden. The marathon continues.

Saturday, October 22, 2016

Farmers market and the stinky van seat

October, 2007. We travel to Boston weekly, visiting with Dr. Walton for pressure checks for Owen. Owen was born with glaucoma, and his eye pressure must be monitored regularly; if pressure rises, this may damage his optic nerve and cause blindness. So far, Owen has had 2 surgeries on his right eye. He is 6 weeks old.

Driving to Boston becomes routine. We pack up the minivan, put Owen and Josie in their car seats, drive the Mass Pike for 174 miles, and have an appointment with Dr. Walton. If Owen's eye pressure is up, he is scheduled for surgery the next week. We keep a hotel reservation for several weeks in advance, just in case.

After each appointment we would typically go to the aquarium or walk along Charles Street to the park to goof off around the duck statues from Make Way for Ducklings. All the while, we wait until Owen needs another surgery. We hope he doesn't, but we know he will.

We have a new minivan, purchased just prior to Owen's birth. What luck - we got the one with an in-dash GPS system and a DVD player. We're not big TV and video people, but having the ability to play a Laurie Berkner DVD while driving 6 hours in a day is helpful.

I'll preface the next few paragraphs with this: I'm not the smartest guy. I've got a decent head on my shoulders, and I can get by. But sometimes, I'm completely lost.

So, we are driving to Boston one morning. It's beautiful - Autumn, with leaves changing, crisp air and  the same deep blue that covered the skies the day I first saw Owen's eyes. Blue.

We pull into a rest area on the Mass Pike to nurse and check diapers. At this particular area, there is a farmers market. Great! I take Josie out to walk along the few tents, looking at apples and pumpkins and making small talk. Alecia stays in the car to nurse Owen.

Josie and I walk and talk, and we slowly make our way back to the car. I put her in the car seat and strap her in safely with her head rest and her little legs poking out in front of her. I tighten her straps and belts.

I smell something.

I look around. I'm standing outside of the van with my head poked in where Josie is sitting.

Something smells like shit. Literally.

Now, when you're a father of 2 little ones, it's not uncommon to smell bad things. There's poop, pee, farts, and general smelliness. But this smelled like shit, and I can't identify the source.

I lean my head in the van and smell the back of the driver's chair where the handle and pocket are.

Ew. This smells bad.

"Sweets," I say to my wife. "The back of this seat smells like crap."


I repeat, "The back of the van seat smells like crap."

She looks at me like I'm an idiot, because she knows me. She comes back to investigate. We're both standing outside the van door with our heads poked in. Josie is strapped into her car seat with her little legs kicked out in front towards the back of the driver's seat where, I believe, the crappy smell is eminating from.

"See. It smells like crap. This van seat smells like crap. Smell it."

My wife leans in and smells the back of the van seat. She then turns her head slightly and smells - and visually checks - Josie's little shoes that are on her feet at the end of her pokey little legs.

"Ok, Sears," she says. She shakes her head at me, or possibly at herself for marrying such a dolt. "It's not the van seat. It's your daughter's shoes. She stepped in dog crap."

While walking through the outdoor farmers market, we must have ventured into ground zero of dog crap, and Josie stepped in some poop, carrying with her the stinky remains of a dog's breakfast, smell and all. I just didn't realize it. I could smell something, so it naturally makes sense that the back of the van seat should smell like crap. It never occured to me that the odor could be coming from Josie's shoes.

Like I said. I am not the smartest guy. And that's how things go for us. Sure, we're running like mad to help save our son's vision. But there are moments of fun, and there are things that happen - tiny events that all families have hidden in their history - that make it all feel normal.

Friday, October 7, 2016

Falling into routines

Alecia is my wife. She keeps it all together and makes it all work. Nothing is ever a big problem for her. She knows that things have to be done, and she does them. She's always been like this.

Autumn, 2007. This is how our weeks go managing Owen's glaucoma:

Owen is a month old. He has pediatric glaucoma, an unfortunate diagnosis for a child who doesn't deserve the lot he has drawn. Owen has just had two surgeries on his right eye. First, a tube shunt was placed in his eye on September 11th, 2007 to help keep the pressure under control. The surgery was a success, but too much fluid initially drained out, so he had to have a second surgery on September 14th called a reformation of the anterior chamber. Essentially the eye had to be reshaped and the fluid inside the globe had to be brought back into balance. Pediatric glaucoma creates high pressure in the eyes, and this robs children of their vision by damaging the optic nerve. Controlling the pressure is the key to preserving vision.

After Owen's second procedure we fall into a groove. We have weekly visits with Dr. Walton in Boston. We pack into the car and drive about 3 hours to see him every Saturday. The trip takes a bit longer than normal because we have to stop and nurse, change diapers, and generally keep the children happy. Owen has his pressures checked. If the pressure goes up, we get scheduled for surgery, which would occur on the following Tuesday.

Alecia has a hotel room booked every week for 4 weeks in advance. Every week. The reservations need to be made and managed separately. If we need surgery, the hotel would be reserved for the week and we'd be ready to go. When Owen gets checked on a Saturday and we are told his pressure is fine, we drive home (after a trip to the New England Aquarium) and Alecia cancels the next week's hotel reservation. She then tacks on another room reservation on the end of our long chain of reserved hotel rooms.

Every trip to Boston is filled with some anxiety. Is this the week that the pressure will be up and we'll need to spend the week in Boston for surgery? Is Owen seeing things? Are his eyes ok?

We frequently look into Owen's eyes to see if they are cloudy or enlarged, signs that his pressures are rising. Remember looking into your baby's eye, just to connect? We do it to connect and to monitor his eyes.

We live like this for months. This is our normal.

Alecia manages it all. She has a notebook and jots down things about hotel reservations and such. She makes sure everything is on track. She makes sure we are prepared and ready to take care of our son.

And it is never a problem. Ever.

It is never a hassle to pack up the car, drive 3 hours for a half-hour appointment and troll around Boston, only to drive home that evening, arriving after dinner and putting the kids to bed. It has never been, and never will be, a hassle or inconvenience.

The children fall into the routine. Owen is awesome. He is held by Alecia for his eye pressure checks, crying occasionally, but never too bad. Alecia has a small container of sugar that she fills with water and dips a pacifier in during the exam. She then places the sweet treat in Owen's mouth to keep him calm during the pressure readings. It becomes normal for him. To this day, Owen sits in Alecia's lap for his pressure checks, and does exactly what he is supposed to do to allow Dr. Walton to get a good reading of his pressure.

One problem Owen has when we travel home from Boston: his little body knows when we are 16 miles away from home. Every trip to Boston, the little baby in the back would start fussing as we are traveling on I-90, and about 16 miles from home, he'll start crying. We could almost gauge our progress in the trip by it. Almost home, and here comes the fuss.

Shh. C'mon buddy. We're almost there. Shh.

Should we stop to nurse? Change a diaper? Relax? We're almost home. Sometimes we push through with the crying baby, other times we stop until Owen settles down. Josie, Owen's big sister, is 2 years-old, and she too, never complains about the car rides, the time away from home, or the responsibility of caring for her little brother's eyes.

That's the routine, and it works.