Heros, Part 1

Today I want to talk about one of the most amazing people that I know:  my son Royce.

Since birth, Royce has been plagued with various problems.  “Problems” is probably the wrong word to use – challenges would probably be more like it.  When Royce was born his bilirubin values were abnormal and ultimately went up to dangerous levels.  We were having him tested every day for nearly three weeks (his poor heals were so sore and he hated anyone touching his feet for the longest time after that) and spent almost a week with him under the “bili-lights” to bring his jaundice levels down.

When Royce was eleven months old, he slipped and fell down the stairs.  He was fussy and whiny that night but went to bed.  When he woke up the next morning we went to pick him up and he cried out in pain.  We took him to the doctor and were told that his right leg was cracked.  They put him in a cast and sent him home with us.  That night we put him down to bed and when we checked on him found that the cast had come off and was lying next to him in the crib.  The next morning we returned to the doctor’s office to have another cast placed on his leg.  A week later and another cast lying in his crib we returned and had his third and final cast placed on his leg.  This time, the doctor placed it so that it formed a Z – bent one way at the knee and the opposite way at the ankle.  This time the cast allowed his shin to be straight and heal while staying on his leg.  Royce was learning to walk during this time and for the first two months after his leg was out of the cast he would walk on his tippy-toes on his right leg.

When Royce was one, he had tubes placed in his ears and his adenoids removed due to all the ear infections that he had been plagued with.  The first time he went in he got a hold of a cracker as we left the house and took a bite out of it before we could stop him.  The poor boy got to sit in his pre-op room for an extra five hours, having not eaten for the nine hours prior to that, while waiting for a bite the size of a dime cut in half to be processed out of his stomach.

When Royce was three, we were told that Royce needed glasses.  When Royce was five, we were told that the glasses hadn’t helped and that he was still blind in his right eye.  Still blind?!  Huh?  That was the first we had heard about him being blind.  (Royce once explained to me exactly what he is able to see out of his bad eye – imagine having six spots of vision, the largest being no bigger than the eraser on a pencil, looking through a back curtain – you could almost describe it as being like a constellation in the night sky.)  That year, Royce spent most of his Christmas vacation from kindergarten recovering from major eye surgery to improve his peripheral vision.  (On the lighter side, we received a phone call from his teacher the first day he was back saying that his eye was red, watery and that we really needed to come get him so he wouldn’t give whatever he had to the rest of the class – apparently the communication from the main office to the teacher had been missed concerning his eye and surgery…).  It was right after this surgery when we had to start blinding our child…  Err…  What did you say?  That’s right, we had to start blinding him.  Our doctor told us that we needed to cause his “bad” eye to work much harder.  To do this, we needed to eliminate his ability to see out of his “good” eye.  So, we started to patch his good eye – every other day for eight hours we had to put a patch on his good eye.  His vision improved a little and all was well until he started to cheat and peek out from under his eye patch.  It was then that the doctor instituted the eye drops.  Now we put in an eye drop every third day which blurs his good eyes’ vision completely for 24 hours.  His vision will then slowly revert to normal over the next two days.  So, twice a week, we continue to blind our child under doctors’ orders.

When Royce was six, he started to have severe cramping in his abdomen.  He would scream and cry in excruciating pain.  We would go to our doctor’s office or to the Instacare clinic only to be sent to the emergency room.  By the time we would finally be seen, his pain would be gone.  They would still do ultrasounds to check for an appendicitis, only to find that the ultrasounds could not see the appendix.  So, then it would turn into a CT-scan to make sure that his appendix had not ruptured.  We were ultimately referred to a pediatric gastroenterologist.  Tests were ordered and all but one item was ruled out – intestinal migraines.  Imagine if you will the severe pain of an appendicitis at random intervals in your life.  When they strike, we give him a pill and if his pain doesn’t quit and calm down within two hours we have to take him to the emergency room and have the ultrasound and CT-scan to rule out an appendicitis.  I also worry about his future as intestinal migraines as a child have been linked to severe migraines (you know, the type that you get in your noggin) as an adult.  Intestinal migraines are also a sign of sever anxiety.

Each time that Royce would go through the intestinal migraine experience there would also be multiple blood draws.  They would always do his first few blood draws by stabbing his arm before finally deciding to put an I.V. shunt in.  And, wouldn’t you know it, after putting the shunt in there would no longer be a need to draw blood.  Sometimes Royce would deal with this well, other times not.  I’m pretty sure that everything done during these hospital visits contributed to his severe anxiety.  When Royce is involved in anything that involves a needle or needle like object (picture the teeth cleaning attachment at the dentist) he totally freaks out.  He also tends to freak if something isn’t exactly as he envisions it should be.  Thus, Royce suffers from severe anxiety.

The next major thing that happened in Royce’s life occurred on his seventh birthday.  It’s not really one of those permanent situations, but it does show how his luck goes related to his health.  It was a bright and shiny spring morning and Royce had received a plastic baseball bat and ball for his birthday.  We were on the back lawn and Savannah had pitched the ball to Eric (who was using his wooden bat because he was “old enough”) and Eric missed.  Royce was walking right next to him at the time not realizing that Eric was swinging the bat because it was on his blind side.  And, wouldn’t you know it, Royce was hit in the face with the baseball bat.  That was worth seven stitches on his cheek and lips.  That was quite an experience at the Doctor’s office that morning (please refer back to the fear of needles and needle like objects as mentioned above).

And that brings us to his most recent health challenge.  Last March we noticed that Royce was having a difficult time swallowing his food.  We immediately became concerned because acid reflux and esophageal problems run on both sides of the family.  So, we called up his pediatric gastroenterologist who scheduled an Upper GI for him.  The Upper GI went as planned (except for the nurse digging for a vein for the I.V. twice – please refer to the previously mentioned fear of needles and needle like objects).  When the doctor finished he came out and told us that Royce’s esophagus was highly diseased.  He placed Royce on acid reflux medicine and sent us on our merry way.  In September we had a follow-up Upper GI and found that Royce’s esophagus was worse.  The doctor told us that it was the worse esophagus that he had seen in anyone under 40 years old.  Really?!  Forty?!  The doctor upped the medicine dosage and ordered another Upper GI in November.  Still, things were just as bad.  So, Royce was sent up to Primary Children’s Medical Center a few weeks ago and underwent a few specialty tests with an impedance probe to determine what is really going on to create such a mess in his esophagus.  We’re told the results will be given to us at his next appointment with his doctor in January.  We’re hoping for answers, but our luck will have to change for that to occur.

So, why have I rambled on for so long about my little boy?  There is a saying that goes something like this, “If at first you don’t succeed, redefine success.”  That saying fits Royce.  Despite all of his challenges that others might tell him to just give up, Royce keeps going – taking on life on his terms.  So, like I said at the beginning, Royce is amazing.  During all of these complex and bizarre experiences Royce has managed to maintain an awesome outlook on life.  If I had all the complex conditions in my life that he has had I’m pretty sure that I would have thrown-up my hands in surrender and given up.  But not Royce.  Royce would never do that.  He just keeps pressing forward and does the best that he can.  Most days you don’t know anything is going on with the wonderful young man, and that’s part of what blows me away about him.  He has one of the kindest and most tender hearts you will ever meet and is always willing to look out for and take care of those around him.  He’s definitely quite the amazing young man!