Welcome to the KingZoo and Funny Farm, where we learn to live, laugh, and love together. Here you'll find snippets of life in our zoo, parenting tips we've learned along the way, reflections on shining God's light in this world, passions in the realm of orphan care, and our journey as parents of a visually impaired child with sensory processing disorder. Have fun!
Thursday, March 24, 2016
We sat in church but I couldn't concentrate on most of the service. I kept getting stuck at God having to watch His Son suffer. I don't remember letting the tears fall, but while my eyes weren't crying, my heart was.
That morning The Good Doctor had taken Andrew for his four year old well-check. That's all we expected it to be. A well-check. Nothing more. The Good Doctor never took the kids to their appointments but for some reason, he offered to take Andrew that day. I think that was God-planned.
During the appointment, the doctor mentioned that he was concerned about the top of Andrew's skull. He noticed that the two plates had grown to form a ridge, almost like to mountain ridges, one forcing the other up and over the other. The Good Doctor repeated the reassurance that it's probably nothing. But when you've just been told that you're to make an appointment with a pediatric neurosurgeon, your mind has a hard time thinking it's only nothing. The Good Doctor believed the professional's opinion. But I just knew. A mom just knows.
So all I could think about that Good Friday at church was that a visit with a pediatric neurosurgeon could only mean one thing and that one thing would lead to watching my son suffer. And while it would not come anywhere near the torture and anguish Jesus had to suffer on the night we now call Good Friday, for me the near future looked unbearable.
And it wasn't long before that which I knew in my heart became reality. It took the neurosurgeon less than five minutes to determine that Andrew had craniosynostosis. In layman's terms, his soft spot had closed too soon and his skull was not allowing his brain to grow in the direction and way in which it was designed to grow. The doctor was angry that this had been left go for so long; he accused us of not taking Andrew for regular well-checks. We countered that we had; Andrew had been to every single well-check as prescribed by the medical community. We told him that we had asked Andrew's doctor about his oddly shaped head but were told that everyone's head is shaped differently. We told him that at one point, a visit to a doctor out-of-town for a suspected ear infection when Andrew was 1 had resulted in that doctor rudely telling us that our son had craniosynostosis and that he was going to be blind or brain damaged. We assured the neurosurgeon that immediately upon arriving home we mentioned this to Andrew's doctor but he again answered that everything was fine.
The pediatric neurosurgeon explained that had this been caught before Andrew was a year old, the surgery would have been less risky, the recovery easier, and the covering of the brain would have naturally filled in the open places left after surgery. I remember asking the doctor if the surgery was really necessary; it seemed quite invasive if it was only for cosmetic purposes. He patiently explained that it was possible to let it go, that maybe it would not cause any problems and Andrew could still lead a normal life. However, he cautioned, the brain wants to grow a certain way and if it can't, the pressure can be unbearable, even causing blindness or brain damage. He told us it was our decision but that if we chose not to have the surgery and we did start to see signs of brain damage, it would not be like a broken arm that could be set and fixed. Once the brain experiences damage, the damage is done; it cannot be fixed.
We were sent to speak to the pediatric plastic surgeon who would perform the surgery along with the neurosurgeon. They would work together to remove the skull, reshape it, and place it back on Andrew's head in a way that would allow his brain to grow as it should. We were told that a brain knows which way it is supposed to go and that as soon as the current restrictive skull was removed, the brain would miraculously reshape itself.
And so, July 7, 1999 was set as surgery day. The neurosurgeon assured us that he did an average of one of these surgeries a week. That fact may have confirmed our faith in his abilities, but nothing was going to completely reassure parents who were about to allow their son's brain to be exposed for hours while we could only wait in a waiting room ...