Ssh….

Kelsey doesn't want anyone (at school) to know, but she will be taking two *sick* days next week.  After years of discussions with her opthalmologists, patching, and updating her prescriptions yearly, Kelsey is finally going to have her bilateral inferior oblique anterior transposition for strabismus.

Translation?  Her left 'lazy' eye, if you will, is going to be fixed.

 

If you remember years and years ago, we had a wee bit of craziness with Kelsey and medical issues when she was born.  My little nugget came out with a bit of craniofacial asymmetry that was fairly obvious at birth, but became more pronounced as she grew.  She was misdiagnosed not once, but twice with serious genetic disorders that had no cure.  We were told at the time of the second diagnosis, while we were on obstetrical medevac to the U.S.,  to get her to Children's Hospital in DC once we moved back to the U.S. from Caracas.  Well, that is all fine and dandy IF you can get an appointment.  We did, but it was not until May of 2003 (she was born in March 2002) that we could actually see a geneticist at Children's.  

When we finally arrived at the appointment, the geneticist took one look at Kelsey and asked why we hadn't visited pediatric neurosurgery months ago.  Well, had she not been misdiagnosed, perhaps we would have, but until we saw the geneticist, no one ever suggested that Kelsey's 'fix' might be as easy as cranio-facial reconstruction.  While no one agreed with the second (pending) diagnosis, no one suggested it might be as simple as craniosynostosis.

Kelsey did not fit any of the standards except for the facial asymmetry.  She was growing as she should, developing normally, walking, talking, eating, doing everything a baby/toddler should do and right on schedule. The only issue that scared us was the increasing facial abnormality.  From the moment I first recognized the asymmetry, I wondered if plastic surgery wasn't the right (and only answer).  Turns out a mother really does know best.

After making appointments for a CT scan, having said CT scan completed, and having numerous tubes of blood drawn (for a genetic work-up that revealed the craniosynostosis was an isolated incident), we met with the now Division Chief of pediatric neurosurgery at Children's, Dr. Robert Keating. He gave us two options:  we could either schedule a 4 hour craniofacial reconstruction or get a second opinion.  Given that Kelsey was nearly 14 months old and the surgery is ideally performed between 6 and 14 months, we went with option #1.  Dr. Keating had an amazing reputation and resume and would be working hand-in-hand with an equally talented plastic surgeon.

Exactly 3 weeks later, on June 27, 2003, we took Kelsey into Children's in DC at a terribly early hour. We checked in, took her to the pre-anesthesia room and stayed with her until she was asleep in the pre-surgical area.  Four hours later, we were called up to the PICU, as she was out of surgery and would be ready for us to see her soon.  By midnight, she was in the step-down unit and when we returned the next morning, they were ready to transfer her to her own room.  

 

Four days later, we headed home with the wee one who now had a scar from ear to ear across her scalp, but no other visible clues to her recent ordeal.  She was eating and playing within one day of the surgery, and a week later outside with friends and going to the playground as though nothing major had happened. However, now instead of looking at her and seeing one eye (painfully, in my mind) pushed back, her eyes were nearly equal.  The only problem is that 14 months of being asymmetrical led to muscle weakness in the left eye.  We had monthly and then yearly follow-ups with her pediatric neurosurgeon, but that was it as far as the surgery went.  The eye, however, was a different story.

 

For years she has worn glasses as her vision is not fabulous in either eye, and the left eye continued to be a bit lazy.  Her ophthalmologist in Iceland tried patch therapy on it and while it helped, it did not cure the problem.  However, her doctor in California did not feel she was quite old enough to have the corrective surgery and suggested we wait until we moved back to this area. By the time we found a doctor here (who, lo and behold, works on her pediatric neurosurgeon's team at Children's!), he felt enough time had passed and we could soon seriously consider the surgery.

We had a follow-up with her neurosurgeon who was extremely pleased with her progress. We then scheduled the CT scan that would show whether or not the prescribed eye surgery would be of any use. A few weeks later, Kelsey met with the ophthalmologist again and he indicated that not only would it help, but now would be the best time to take care of it (especially since you know who is going you know where soon…).  So, Kelsey will have nothing to eat or drink after midnight next Wednesday night and Thursday, the 23rd, in the early morning, we will head to Children's in Fairfax.  

I have to admit, eye surgeries freak me out a bit.  The eyes are just so…delicate.  However, I did a bit of reading on the technique and it is not nearly as, well, scary, as I had assumed. It is a relatively simple outpatient procedure and Kelsey will not even require an eye patch.  Given that she will have general anesthesia, she will not go to school Thursday or Friday, but we don't anticipate any other issues.

If you are curious, no one knows exactly how much this will help regarding her overall vision.  Her right eye is not perfect either, so it is a given that she will likely continue to wear glasses for the rest of her life.  However, her left eye will no longer drift and it will be interesting to see how this helps her.  While no one has ever really bothered her about this issue, I know she does not like it and has come to realize that the surgery may be a good idea.  In fact, she was completely against it 6 months ago, but decided at the last visit that she could "handle it."  I don't know if this has anything to do with seeing me go through major surgery and come through just fine, but if so, well, good!

If you feel like sending Kelsey a comment at her new email addy or a card, please feel free to do so.  I know she appreciates any and all well wishes, so long as no one at school finds out (eye surgery isn't the 'in' thing this year?).  Maybe she'll start randomly coughing and sneezing Wednesday afternoon to justify her illness, who knows, but we will just be happy to have one more surgery out of the way.  After all, I get to go back in for yet another procedure on April 16 (yes, it's been scheduled) and with Peter leaving for you-know-where on May 21st, we only have so much time to get so many tasks completed.