Wednesday, December 16, 2009
Playing at the Smithsonian Museum
(In the spirit of Christmas, let's pretend this post is not several weeks late!)
So the final day of the study had a fairly light schedule, which was a relief for the whole family. We originally had ambitions of taking the metro into DC every night to see the sights, but we quickly realized we needed to rest up at night as much as possible. Despite our efforts, I was feeling exhausted, sensed sickness coming on, and was in a generally fragile state of mind come Wednesday morning.
The first appointment was with the Occupational Therapist in a playroom similar to the rooms at preschool. The boys were thrilled at the chance to sit and play instead of being poked, so they immediately went bonkers. I was surprised that while the OT and her assistant asked the typical developmental questions and observed the boys doing a few key activities, their focus was actually on vision. Apparently she has a lot of experience with adults with albinism and helping them adapt, so she had a wealth of suggestions. She gave tips on everything from slanted boards to help with writing and coloring, to techniques for getting colored tints in his prescription glasses to help with glare and fluorescent lights. In short, it was a great experience.
We were riding on this high when Dr. Adams came in to inform us that some of the results from Fionn's blood test came back abnormal. Since our second and final appointment for the day was a wrap-up session with him in the afternoon, he asked us to get Fionn's blood drawn again right away so that he could have the results in time for our meeting. Apparently, the elevated level could indicate a problem with the liver, so he wanted to confirm the results before taking any further action.
As we walked down to the phlebotomy office once again, I felt myself coming apart at the seams. If it had been any other organ I might have kept cool, but Fionn had an unexplained spot on his liver during my pregnancy ultrasounds, so my thoughts immediately went to dark places. When the man at phlebotomy looked up from his desk and saw us standing there, his face looked equally dark. "Weren't you guys in here yesterday? They're making these poor kids do more blood tests?"
His empathy and care as Fionn had to get his blood drawn again - now on the same arm as his biopsy - was touching. It also made me want to fall apart even more. We spent another lunch in the basement cafeteria and I silently cried through the whole meal. I knew I was overreacting, but sometimes all I can do in moments like that is sit back and watch myself dissolve.
Luckily, both boys fell asleep just in time for the meeting, so at least our appointment was nice and quiet for once. Dr. Adams showed us that the test results had come back elevated once again, but since other results came back normal, he was at least able to rule out liver problems. Whew!
He explained that when you do this much detailed testing, you're bound to find something abnormal, so most likely it was nothing. He gave us some information sheets on a condition where these particular levels are consistently elevated in young children, but they were vague at best about what the condition meant. There doesn't seem to be any symptoms, but it is correlated with other conditions. Basically he sent the results to our pediatrician with the suggestion that we test every six months to determine exactly what's going on.
The rest of the appointment was spent answering whatever questions we had for him about the study and albinism in general. Out of curiosity, I asked what was the largest number of siblings with albinism he had seen in a single family and he answered "Three." We're not planning on having anymore, but every once in a while I ache for a daughter and wonder what the odds of having three kids with albinism are (I mean I know statistically, but statistics aren't always realistic). After the appointment, Robbie shot me a look, "Did you ask him that because you plan on breaking the record?"
I assured him that I could never handle four children, much less the bill for sunscreen, but it is an interesting academic exercise to ponder. There are some geneticists who claim that despite the typical 1 in 4 odds for exhibiting a recessive genetic condition if both parents are carriers, there are some instances when all the children are born with it. This has led them to wonder if something in the reproductive process is selecting for that condition. That's my shoddy attempt to explain the scientific reasoning, but hopefully it makes some sense.
With the study now officially done, we headed back to the Inn for a dinner sponsored by a local hotel. I should explain that earlier in the week, we had met an adorable 13-year-old girl who was staying at the Inn with us. She was bubbly and funny and talked so much I wanted to collapse with exhaustion. But I adored her. We talked about boys and school and life as a teenage girl - all the things I couldn't wait to talk about with my own daughter someday. After a couple of nights, she also revealed that she had a huge crush on my husband - or "Mr. Robbie" as she called him.
One night on her way to bed, she asked me if she could give me a hug goodnight so she had an excuse to give Robbie a hug too. Of course I agreed and had to stifle a giggle as she gave him a quick hug. On her way out, she ran over to whisper in my ear, "It was SO good...my knees are shaking!"
Playing at the Children's Inn
That is why I was not surprised when we returned from dinner at the hotel Wednesday night to find her - and several of her friends - waiting at the top of the stairs for us. Apparently word had spread about her crush and they were waiting none-too-patiently for Robbie's return.
Unfortunately, I wasn't feeling well enough to be in the playroom all night, so I left her without a talking companion. When we packed up and left the next morning, I wrote her a note to say my goodbye and coached Robbie as he wrote his own note. I knew it had to strike the right chord so she would have something to swoon over without making him sound creepy. We settled on a post script that read something like: By the way, you're a cute girl who will get a lot of boys, so make sure you choose carefully! I got an email from her a few days later and apparently the note was a huge success.
Can't say I blame her - my Mr. Robbie is quite the heartthrob.
Robbie in front of the Smithsonian