January 28, 2010 to June 10, 2010 – New Developments are Underway

Has it really been almost six months?  While I wholeheartedly admit raising Adam, Katelynn and Daria keeps my free time at a minimum, I also feel a peculiar tug of guilt or regret that I have not put out a better effort to capture in words all of the experiences the Owyang family has undergone.  There just always seems to be that “something else” that needs my attention, and unfortunately, posting in my journal falls on the wayside just like the well-intentioned resolution to take more pictures or record more video footage of my wife and children for the sake of posterity.  As cliché as it may be, I suppose it is still better late than never.

Today’s post will focus on my beautiful Katelynn, who continues to amaze us with how much she has developed.  Jenn-Jen and I do not have a week that goes by without one or both of us expressing how thankful we are that Katelynn has thrived despite the grim prognosis that clouded her birth.  We have spent most of the past two years and four months wondering about the severity and potential impact of Katelynn’s developmental challenges, praying that God would continue to bless us with more miracles, and preparing ourselves to be able to handle any situation that may come our way.  Dear friends and family, there is much in the way of good news to share, yet there is still much more in which we ask for your commitment in prayer.  Let me begin with the positive.

Both Katelynn and Daria have been in a long-term struggle with acid reflux that has been mostly remedied with the use of Prevacid.  Without this medication, I honestly do not know how we would have made it this far.  Katelynn still seems to have a chronic problem with a build-up of phlegm that causes her to vomit just about every day, but through the suggestions of the Dietician at our Pediatric Gastroenterologist’s office, we have been successful in boosting enough calories in Katelynn’s diet over the past few months to finally have her show up on the growth chart for weight.  Of course, we are looking at roughly the seventh percentile for her age, which seems quite pathetic in itself.  Nonetheless, just seeing that mark on any percentile curve was an accomplishment Jenn-Jen and I have yearned to see for well over two years.  Katelynn is weighing in at a relatively hefty twenty four and a half pounds, and we feel encouraged to keep working on this upward trend.

As for Katelynn’s motor skills, the battalion of therapists working with our daughter on a weekly basis has made a very significant impact in reversing the debilitating effects of cerebral palsy.  Of particular note is Katelynn’s participation in a treadmill study offered by the Physical Therapy Department at the University of the Pacific.  Over the course of six weeks in April and May of this year, we had the blessing and use of a toddler-sized treadmill, as well as the oversight and coaching of a very compassionate Professor, researcher and physical therapist.  We watched and recorded Katelynn’s progress from spending ten minutes a day at 0.05 meters per second at the beginning of the study to an impressive minimum of forty minutes daily at 2.50 meters per second at the conclusion.  We were also allowed to borrow a small walker which we continue to use in helping Katelynn reach the goal of walking independently one day.  I simply cannot express the true joy in my heart through the words expressed here whenever I reflect on how much Katelynn has changed from the frail infant, literally fitting into my palm, to my determined little girl with the most precious and victorious smile on her face as she grasps her walker, traveling from one end of our local Target store to the other.

Katelynn has also been surprising Jenn-Jen and me with her ever-increasing use of language.  While we have our doubts as to how much of it is meaningful conversation versus simple mimicry, I can tell you that Katelynn is saying things like “Mmm… that’s so good,” and “Wow!  Cool!”  That second phrase must have come from Adam, or Katelynn is really growing up way too fast.  Now I just need to see if I can record these on video, in addition to her giggling like Elmo from Sesame Street and calling a banana an “apple.”

As much as I wish I only had positive news to share, new developments are underway, and they concern us heavily.  At the end of April, Katelynn underwent a Magnetic Resonance Imaging (MRI) scan of her brain at the request of Dr Ciricillo, her Pediatric Neurosurgeon.  Two weeks ago, I brought Katelynn in to have the scan reviewed in what I would have expected to be a routine follow-up visit.  As the doctor brought up the images of past Computerized Axial Tomography (CT) scans, he studied them with a calm focus and compared them to the more detailed image from the MRI.  The silence did not sit well with me, and the matter only worsened when he informed me that Katelynn would need to go through another operation on her brain.  In my mind, it was practically a foregone conclusion that all of Katelynn’s major surgeries were a thing of the past.  At most, I feared that there may be another revision or her ventriculoperitoneal (VP) shunt (http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm) many years down the line, but this was much too soon to hear of such unwanted news.

As Dr. Ciricillo placed the MRI and CT images of Katelynn’s brain on the LCD screen, he showed me where the Grade IV intra-ventricular hemorrhage (IVH) had created scar tissue that caused one of Katelynn’s lateral brain ventricles to swell with cerebrospinal fluid (CSF).  The ensuing hydrocephalus was remedied by the VP shunt that was put in place shortly after birth and all had been fine, so we thought.  Apparently, over the course of the last two years, CSF had been building up and not properly draining in Katelynn’s fourth ventricle (see the red zone highlighted in the picture below).  The MRI provided such a highly detailed image that was not fully captured by the previous CT scans, so this very unfortunate development came as a surprise to us all.

Fourth ventricle - highlighted in red

As I sat there, quite stunned by what I was seeing, Dr. Ciricillo went onto explain how the fourth ventricle has expanded significantly and is, and will continue, to put pressure on Katelynn’s brain stem and cerebellum.  The brain stem includes vital areas that play a significant role in basic functions such as sleep/arousal, movement, attention, breathing and other vital reflexes.  The cerebellum is another extremely important part of the brain that controls and coordinates muscle movements.  Holding my increasingly-fidgety Katelynn, I still could not fully absorb the fact that we would need to subject my young daughter to another surgical operation.  This just cannot be happening.

There is actually much more I could write on this, but I would like to continue on tomorrow with more details, including Dr. Circillo’s recommendation as to how we should proceed.  Right now, Jenn-Jen and I would appreciate all of your prayers for Katelynn and our family, as we prepare for the inevitable operation.