So, Wednesday we headed in to his pediatrician's office for the needle-stick/general checkup/18 month well-visit. We biked the mile and a half there, and he sat patiently while I unloaded him.
He got weighed, measured, and stripped, and spent the first part of his visit running naked in the exam room. It was cute. Then his doctor came in and looked at him, back at me, down at his chart, and back at me.
"He's little." Now, when you see my son, he seems like a happy little chunker. Broad shoulders, fat cheeks, plump little arms and legs. He was always our big boy, weighing in at 20.5 lbs right before his second surgery in September. The problem? At 18 months, he only weighs 21 lbs.
How could this be? He hadn't gained any weight, any height, and it seemed his head was shrinking as well (although only by a quarter of an inch). Our pediatrician was befuddled, and we re-measured him. Nope. He simply hadn't grown since his surgery in September.
"Most 'failure-to-thrive' cases aren't a huge deal, and they fix themselves or there are endocrine or hormone issues," she explained. "The worry with him is that with all of his other issues going on, there may be more to it than that." What issues could those be? Well, our first option was aortic stenosis, which would have been due to Little Monkey's original heart condition. The doc told me to take him to his regularly schedules cardiologist's appointment, and then we'd go from there.
The next day, I headed in to Children's Hospital for his speech pathology appointment. He's a little speech delayed (although not as much as Rorysaurus was at this age), and doesn't point, clap or follow directions as well as they would like. Normal for a baby with the kind of trauma he'd had, they told us we should look into therapy and try to actively teach him signs. Fine. No real worries there, then. Everyone kept commenting on how cute and sweet my little boy was, and he is, but when I would mention the lack-of-growth issue, the doctors and nurses would all have the same response, "well, he is a pale little thing isn't he? Does he have a cough?"
Turns out that one of the leading causes for lack-of-growth in children is Cystic Fibrosis a genetic disorder of the lungs, that proves fatal, usually before the end of early adult-hood. It is most common in people of Caucasian and Mediterranean descent, and while newborns in California are now screened for the most common mutation, because of Little Monkey's unique genetic background, they thought it could be the other kind. I decided I don't want to think about the whole mess, and began praying for a heart problem, since that could be repaired and fixed with a very minor (balloon-o-plasty) surgery.
No such "luck" it seemed. His heart was fine, which normally would be a cause for celebration. I called the pediatrician with the news, and I could here her trying to figure out how to suggest, gently, that my son might have a condition that would take him from me very, very early.
"So, when do we test him for CF?" I asked.
"Do you just read my notes when 'm not looking?" she asked, and then got off the phone with me to schedule Little Monkey a lab test.
It got scheduled for the next morning at 8 in the morning, and then after that, we had the appointment with his neurosurgeon and plastic surgeon. This was turning out to be a very tough week.
We dropped Rorysaurus off at school at 7:30 am and hurried into the hospital to get settled in for the CF test. It just about broke my heart the way that the nurses would be so friendly and playful with him until they realized what he was there for, and then how sad it would make them. I found myself repeating "Please not CF. Anything but CF" over and over and over. The swabbed him with chemicals, aplied bandages and told us to take him out to play (they test for CF by collecting and analyzing sweat).
The whole time I kept thinking, "There is no way this kid has a fatal illness. I mean, look at him."
They removed the bandages and sent us across the street to the surgeons'. After a short wait, they decided that no, his head wasn't growing, but that no, there wasn't any impact on his brain. Yes, they were going to have to do more surgery, but no, it probably wouldn't be in 2009. "We want this next surgery to be his definitive one," Dr. Sun said. "We'll want to do it before he starts school, but not much earlier than that unless a pressure problem develops." Dr. Toth agreed, although he was less pleased with Little Monkey's bumps than Dr. Sun. "You want to have his head-shape repaired before he starts school because kids are vicious, and will tease him." Fine. We took a picture with their Spiderman statue on the way out, and agreed to come back in 3 months.
Anxiously awaiting test results, we headed home to get Needlenoggin to go do day-long important legal stuff. As we were trying to leave the apartment, the fire alarm went off. Building 6, two buildings away, had a small fire in it, and so the elevators were all shut down and we were to evacuate. Except, we couldn't evacuate Needlenoggin without the elevator. So, we waited, and waited, and waited while the Fire Department dealt with the fire, and finally got out on the road to the office.
In the middle of "important" legal proceedings, our pediatrician called. No CF. I thought I would cry, I was so happy. The last couple of days just sort of fell away as I hugged Tuffy. Yes, my Little Monkey was going to need more surgery and no, no one knew what was actually wrong with him yet, but now we could just start tracking his food, and doing blood tests, and I didn't have to think about the slow and terrible progress of CF.
