Sketches, Part Two

The last time I wrote specifically about Annaka, I used a cave analogy to try and explain how we felt about her diagnosis of Biliary Atresia.  Caves are dark and unfamiliar and you bump into things, which was basically what we were doing.   We were learning terminology and reading about other children who had gone through a similar situation, scratching our way through weeks of dank days.

This past weekend was spent once again at Children’s Hospital, and minus the needle pokes for her and the absurd sleeping conditions for us, the experience was not terrible.  This is a very good place with very good people.  The food is actually tasty and there is a garden on the eighth floor that, now that the weather has turned, looks like a sketch out of one of God’s rough drafts.

The real takeaway from this weekend, though, was that our time in the cave has ended.  The doctors with their tests and experience have reached down into this pit and have basically said, “Here’s the deal.  We think we can get you guys out of this mess, and this is how we’re going to do it.”

Annaka needs a new liver.  Her current liver is kind of like a boat with a small leak in it.  The boat is being a boat; it’s floating, but it won’t float forever.  A day will come, probably within the year, when she will need a transplant.  This transplant can come in different ways.  Ideally she gets a young liver—and yes, that’s morbid—that will age with her.  This is not like ordering a prosthetic limb, though, and she may get in a situation where she will have to have a live donor.

In this predicament, a living person, one who matches her blood type and has passed a battery of tests him or herself, will have a surgery to remove about twenty-percent of their own organ.  This piece will then be put into Annaka, and, over time, will become her liver.  Weirdly enough, the donor’s liver will also heal itself and become full again.

This future hospital stay for Annaka will be heavily influenced by an assortment of specifics:  how well she heals, whether or not the new liver is rejected by her body, how she adjusts to the new medicine.  The best case scenario is the new liver works and over time her hospital visits can be scheduled twelve-months out.  The second-to-worst case scenario is the liver fails and she needs another transplant immediately. 

Between those situations lies the more plausible: two steps forward, three steps back; medicine tweaking; clinics, infections, sleepless nights.

The cave, then, has been replaced by a mountain looming in the distance.  This is our walk, though, and to get there, in the meantime, we have started a regimen of night feedings designed to increase her weight. She takes four four-ounce bottles a day and then is slowly fed the same amount through an NG tube at night.  Thus far she has gained a few ounces and seems to tolerate the whole thing the same way she has tolerated just about everything, cautiously smiling at the world opening up around her.

As I’ve said before, this is not and has never been a struggle on our own.  Along with the gifted doctors, we have been inundated with prayers and the people behind them who have also helped out in very tangible ways:  gift cards and food, folded laundry and mowed lawns.

As you might guess, a live liver donation must be done voluntarily with full understanding of the risks.  So far a few people have actually said they’d do it, and not in a, “Hey, don’t know if our blood types match but I’ll say I can donate so I can sound heroic,” way, but in a “I am O positive; I love this girl; sign me up.”

We will return to Children's soon for more tests and meetings, and at that point she will most likely be put on the official transplant list.  The distance between us and the mountain, at that point, will be left up to God.

Crazy Plates!

My son will turn five this month.  Like many fathers, I am tempted to wax nostalgic about the past half-decade, but I will spare you these details and instead use this forum to get a head start on some progeny-inspired patenting.  Thus, without further ado, I present to you these five haphazardly considered products, one for each year of my son’s life.

Item One:  “You Might be My Mommy” perfume.  Like most people who know us both, my son prefers his mother to me.  I get it.  When he was a baby, though, he would do OK around other people, as long as his mom was out of the room.  He would giggle and cuddle and seem to be having a terrific time, but the moment his mom showed up, he began to sob.  She would either have to swoop in and rescue him or just avoid the room altogether. 

However, with this product, women in a similar situation will be able to walk around their entire home without fear that their children will want to have anything to do with them. Designed from the birth mother’s specific body chemistry, non-mommies simply douse themselves with the artisan perfume anytime they wish to hold the baby.  Over time the child will learn to accept affection from either parent, grandparent, sibling or pet.  Like many of my ideas, this one seems less impressive in print.

Moving on, then, to item two, the Toddlerchute.  Almost as soon as my son began to walk he began to climb, and once he got climbing figured out, he began to jump.  He loved to leap off furniture and still does, but the problem has always been gravity.  Gravity necessitates falling, and falling sometimes hurts.

The Toddlerchute, as its name implies, is basically a micro-altitude parachute.  It looks like a normal toddler harness until the youngster leaps, after which a brightly-colored nylon chute pops open.  This contraption will not only slow your child down as he or she, but most likely he, descends to your floor, it will also allow you to quickly locate the toddler in a crowded playground.  Colors range from fire-truck red to blaze-orange.

Item Three:  Crazy Plates.  Does your kid want the ranch dressing to be exactly three millimeters to the south of the broccoli but not touching the applesauce?  Does your child love hot dogs but only if the hot dog is not in the bun, but he also wants the bun handy so he can dip it in the ketchup that also cannot be touching anything on the plate?  Is your kid crazy?

Try Crazy Plates.  Shape shifting tableware that you can mold to your individual child’s idiosyncratic whims.  Our motto:  “Never again throw away a jellied biscuit that had the audacity to touch a buttered bun.”

Item Four: The Teenage Mutant Ninja Turtle “Are we Getting Closer?” App.  Disguised as a normal digital tablet game, this is a glorified GPS with cartoon characters.  You plug in your coordinates, hand your kid the tablet, and drive.  Moments later, when your kid asks the inevitable question, “Are we getting closer?” one of the Teenage Mutant Ninja Turtles will respond with, “I don’t know, dude, does it LOOK like we’re getting closer?”

Following that, a map of your two coordinates will then pop up on the screen, along with a slowly-moving icon representative of your vehicle.  This will teach your child both map reading skills and spatial reasoning as well as delay the anticipated meltdown by at least seven minutes.

Item Five:  Sock Molder.  My son has this weird thing about socks.  He has not accepted the terrible reality that socks, for the most part, are just gloves for your feet.  As adults, we soon learn that our socks will betray us.  They will either be too tight or too loose, too small or too big.  Even if they start out great, over time they fray.  They’re just socks, though, and so we accept that and get on with more important parts of our day, like putting on our shoes.

Not this kid.  He’s nothing if not an idealist, imagining a utopia filled with perfectly formed socks and “slick” shirts with no tags.  To help herald in that day, then, let’s consider the Sock Molder.  You simply make a plaster mold of your kid’s foot and then place a slightly too-small sock onto the mold.  Wait three days.  Viola! Your new socks fit perfectly!  At least for awhile.

My son has inspired many other ideas over the years, of course.  However, these seem to be the most marketable, except for maybe that perfume one, which might be unhealthy.  Regardless, I am looking forward to the next half-decade.  Early evidence suggests I come up with a display case for Legos.

                  

                  

Mother's Day, 2016

On this Mother’s Day weekend, I feel compelled to recognize not just one or two moms, but three.  First off, to my own mom, Elvera Robison.  Not only has this lady raised three occasionally likable and moderately productive people, she’s also stepped up in a huge way these past few months, helping out with her newest granddaughter, especially now that JaLana is back to work.  Also, I need to recognize my mother-in-law, Judy Lewis, who has also helped us out with Annaka, even going so far as to actually live with our sorry selves during the week.  These two might be retired but they’re certainly not resting.

Finally, a big shout out to my wife, a mom of seven years, whose love and devotion to her children are beyond amazing.  Like many babies, Annaka has to eat often, (every three hours), but due to her health needs, skipping meals overnight is not an option.  What this means is that every three to four hours, regardless of where she is, JaLana stops what she is doing to provide food for her daughter.  What this means is that this lady has not slept more than three hours straight in four months, and yet somehow has refrained from throwing a single kitchen appliance at anyone in her home. 

Forget whose running for President; it’s moms like these who keep this place running. 

Sketches, Part One

The news was disappointing.  About two months after her Kasai surgery, Annaka’s bilirubin levels are almost back to where they were before the procedure.  Although she is gaining weight—slowly—and is fully capable of smiling and gabbing and seems very interested in the antics of both her siblings, the reality is that she is sick.  Her liver is not working.  The surgery designed to maybe fix what was never really broken but was just never really there in the first place—her bile ducts—is failing.  According to her surgeon and her G.I. doctor, she will most likely need a liver transplant before she is two.

It goes without saying that we were hoping and praying for much better news.  Many, many people were hoping and praying.  Now our goal is about nutrition.  Getting her to gain weight, however, which will make her a better candidate for a transplant, is much easier said than done.  For one, her liver issue means she metabolizes calories much quicker than normal, which is cool if you’re an adult but not so much in an infant.  Also, she does not have a good appetite anyway, which is then complicated by the excessive fluid in her tummy.  (This is an added symptom of liver failure and portal hypertension)  The goal is to get four ounces of milk into her every three hours, which is a particular challenge, since she takes about sixty minutes to drink those four ounces.

Despite all this, though, we are remaining hopeful, which is scary in itself.

Because we’ve been hopeful before.  We were hopeful on New Year’s Day, when we left the NICU two weeks after she was born.

We were very hopeful on January 28^th, the day we visited Childrens’ Hospital for her one month checkup, after getting great news from the cardiologist and the surgeon who fixed her who told us we could stay away for an entire year.

We left the hospital that day, believing, sincerely believing, that a difficult chapter in our lives was over; that we had made it out of a rough patch of wilderness and now we were walking in the sunlight.

But then that meadow caved in, and the bright blue sky became a speck leaking into a hole.

Despite the diagnosis of Biliary Atresia, we remained hopeful when they wheeled her into surgery for the second time, this time to connect her liver to her small intestines, and also when she came back out with a crescent shaped scar across most of her stomach.

So the question needs to be asked, and maybe even answered:  why keep hoping?  Aren’t you disappointed when things turn out bad?

Well, yeah.  We are extremely disappointed.  Our baby girl was born with a liver that hardly works.  If it isn’t healed, she’ll die.

But here’s the deal. Wouldn’t the news be just as disappointing if we hadn’t hoped?  Is the level of disappointment worse than it would have been had we just assumed the Kasai procedure would not have worked in the first place? 

On March 1^st, she had a surgery to fix her liver.  Four weeks later we found out the surgery might be working.  On April 26^th, we found out the surgery is not working.  That’s over fifty days that we chose to be hopeful, that we chose to be optimistic, that we chose to believe in the best possible outcome. 

Because the reality is, Annaka needs people smiling at her and singing to her, not crying in the corner of darkened rooms.

It just seems that trying to remain hopeful is an entirely rational reaction to what is happening.  As we continue to stumble around in the dark of this unmapped cave, hope becomes an essential response, almost like a flashlight getting us from point A to B, from Monday to Friday and back again.

Fortunately, we are not and have never been stumbling by ourselves.  We continue to be blessed with a providential peace; we continue to walk by faith, not always by sight.  At the risk of forgetting someone, we won’t mention names, but the outpouring of support from our family, friends, church, and colleagues (many of whom are actually friends we’re just fortunate enough to work with) continues to be overwhelming and humbling.  Just in the last week we have had relatives mow our lawn, clean our house, and pitch in for a much needed deep freeze to store the absurd amount of Annaka’s milk.  We’ve had a crazy amount of food given to us, often brought to our door steps, and we’ve had an embarrassing amount of medicine-money just placed in our lap.

Not to mention all the prayers, not to mention all the hours put in by both of our mothers, who have reminded us in a way we can’t quite fathom that parenting is not a part time job, nor is it something you someday outgrow.