Wednesday, December 2, 2009

Travel Log Part Three - Tough Tuesday

Playing at the Children's Inn

Monday ended with a biopsy and Tuesday began with a blood draw for the whole family. I was starting to think they should have scheduled these things for the very end so the kids wouldn't be too traumatized to even walk into a doctor's office, but I'm sure they have a method to the madness. This added yet another screaming session from restraining them and yet another bandage for Emerson to point to and say in the world's most pathetic voice, "Boo boo!" Dr. Adams had mentioned they would apply a topical numbing cream and he put the orders in, but somehow it got lost and was never done. I do have to say, however, that the staff of Phlembotomy took extra care to get the kids in first and make sure it would be as fast and painless as possible.

When we talked to Dr. Adams on Monday, he mentioned that the opthalmology appointment scheduled for Tuesday was always the roughest part for families. I knew it would be long and frustrating, but we've done many 4-5 hour long opthalmology appointments in the past three years, so I didn't think anything of it. I should have listened.

The appointment started with the usual goofy voices, barking puppets and bouncing teddy bears to get the boys to hold still while the doctors looked at their eyes through thick lenses or tested distance vision. Despite the fact that Emerson was reliably matching the black and white pictures opthalmologists use during our time with his vision teacher, of course he refused to cooperate at the appointment.

They did use the Teller Acuity cards to get an estimate on both boys, which was around 20/400 for both. It's actually better than I predicted for Emerson, so that's a start. They said Fionn's vision is at the very, very bottom of what's considered normal for his age range while Emerson is well below the normal range for his age. So in that sense our predictions were right: they both have impaired vision, but Emerson's is worse.

On the down side, both have developed an astigmatism, so we need to better about making Emerson wear his eye glasses and Fionn needs to get a pair as well. Keeping glasses on that wild child is going to be a pain in the a** to say the least. But I guess I should have seen it coming (no pun intended).

During the day, we also learned that two of the doctors, including the main opthalmologist, Dr. Brooks, trained with our local doctor, Monty DelMonty (I'm purposely spelling it wrong in the hopes that he won't decide to google his name one day and discover this post). We are certainly lucky to have such a great doctor in our area and this conversation confirmed that. But I do wish he would work on his bedside manner a bit more. The initial diagnosis appointment for Emerson was a little rough on us and even at our last appointment, Dr. DelMonty was shaking his head over the fact that we hyphenated our kids' last names.

"What are these poor kids going to do when they get older and get married? Hyphenate it again?" I couldn't believe a man named Monty DelMonty was seriously criticizing my naming choices, but I digress. :)

Dr. Brooks was hands down a great doctor and wonderful to talk to. At the wrap up appointment near the end of the day, he was working with a nearly comatose Emerson, so I was doubtful that we could accomplish anything. However, he managed to get him to hold still and even smile by singing the entire "Elmo's World" theme song over and over again in his best Elmo voice (and with no shame despite a door open to the waiting room.)

The rough part came in the middle of the day when they dilated the boys' eyes and then sent us down for photos. You can imagine that if you are already light sensitive, having your eyes dilated and then having your head put in some machine that shines a light at you would be pretty bad. Then add to that being an antsy, hungry, tired three-year-old who must hold still while they meticulously focus the cameras and shoot flashes at your face, and you can see where this all went south very quickly. By the end of his session, all of us were sweating and Emerson was nearly hoarse from the protesting.

We learned from other parents doing ophthalmology appointments that day that the photographs weren't nearly as bad for them, but I don't know if that's because their children aren't photosensitive or because my child is just a lot less compliant. Fionn did ok, but he had taken a nap and had to be woken up well before he was ready in order to take the pictures. I expected screaming to ensue, but our biggest issue with him was getting his tired, wobbly head to stay up and his drooping eyelids open.

By the end of the day, we were all beyond exhausted. We dragged our sorry butts back over to the Inn and - by some miracle - managed to get ALL four of us down for a three-hour nap. We woke up and went straight to the community dinner, which gave us a chance to relax and talk to other families.

The information we've gathered during this trip has been extremely interesting and helpful, but the best part has definitely been all the people we've met. (I know, I sound as gushy as someone who just got back from highschool band camp or a corporate retreat to build camaraderie, but bear with me.)

While we were at the ophthalmologist, we heard from the nurses that there was another family whose four-month-old son was recently diagnosed with albinism in the room next to ours. We managed to track them down just before they left, so we talked over lunch. Their little boy was scrumptious and it felt great to talk to someone else who can relate to our concerns and questions!

We've also met so many great families at the Inn, especially during our many hours in the main playroom. At first I wasn't sure what the etiquette would be - I mean, I certainly didn't want to walk around saying, "So, what are you in for?" I figured many families wouldn't want to talk about it, but I soon discovered I was wrong. Most conversations went very quickly to that subject, but I have to say I found talking about the boy's issues with these families therapeutic rather than annoying. Even though the issues vary widely and run the whole gamut from minor to life-threatening, I think we all shared a common thread. We had our world turned upside down, even if only for a short time. We've felt vulnerable, helpless, and frustrated. And we've all fallen head over heels in love with these tiny people we never expected to be in our lives.

We've met children with Joubert's syndrome, digestive issues, a brain tumor, fluctuating hearing loss, vision problems, etc. In only a few short days we were wishing each other good luck as we headed out for the morning, waving at each other in the halls of the hospital, comparing notes on appointments, and sitting down to dinner together at night. I looked on this trip as a chance to help science while getting some sight-seeing in, but I don't even care that we've only been downtown once. It's a strange little microcosm of the world, but I'm certainly going to miss it when we leave Thursday night.


  1. When Josh died I found the most difficult thing was that people felt so uncomfortable around us and were afraid to bring up the subject of his death or illness. I desparately needed to talk about it and when I would find someone who had shared a similar experience or who was willing to sit patiently with me while I talked and sobbed I was so grateful. Sharing is cathartic and I'm so glad you've been able to have this experience and offer your love and support to others that are suffering.

  2. Cass, thanks for selflessly sharing your experiences. "Perspective" doesn't even begin to cover it. In the 3+ years I've known you, you have never failed to impress and inspire me. Your beautiful and personality-blessed (shall we say "spirited" ;) little boys are so lucky they picked you.

  3. Cass thank you SO MUCH for such detailed posts and for the open sharing. It sounds like a really positive experience and I'm just so happy for you. Fionn and Emerson are so lucky to have you and Robbie and we are so lucky to have all four of you in our lives. We're so excited to see you tomorrow. Welcome home!