Wednesday, September 26, 2012

Doctors and butterflies

We had an appointment at CCMC this morning with Dr. Radar who did Oliver's gtube surgery. She took out the button that was too big and causing friction, resulting in granulation tissue around the site. Very gross and sensitive tissue that he never had issues with until this wrong size button debacle. Well now he has the correct size in! Yippee! She used silver nitrate on the granulation tissue and sent us home with some to treat it a few more times on our own. "Treating" it means chemically burning it off, yikes. Our boy is such a tough cookie. At first she was going to have us go to his pediatrician a few times to apply it, then she reconsidered and realized that we were perfectly capable of doing it ourselves. As far as MLD is concerned we probably know more than 99 % of the population, and as far as our son, we know 100% more.

We were in and out of the appointment incredibly fast, and I don't mean that the Dr rushed us, not at all. Just all that annoying waiting you tend to do at appointments, we had none of that. From the minute I walked up to the secretary they brought us pretty much right into a room, and Dr Radar walked in the door 3 seconds after us. We hadn't even sat down. Oliver gets VIP treatment at CCMC and I sometimes wonder if it's because of the serious nature of his condition, or because they have a post-it note in his chart that reads "Don't piss off this Mom!". Maybe a little bit of both. Did I mention he got not one, but two stickers at the end? Yup, that's right, Oliver is VIP all the way!

The entire visit was so quick that we only paid $1 at the parking garage, that's a first. We also had time to go to the Rainforest Cafe only a few minutes from the hospital. Ollie's Grammy Ciparelli met us there. Oliver loved all the sights and especially the sounds, that place is loud! I think that was his favorite part! He loved the gorillas and we moved tables to sit right next to a giant yellow butterfly that Oliver was fascinated with. Now he is sleeping in the backseat, the rainforest wore him out.

Look at those cheeks, he's put on weight. He's finally into size 24 months.

Loving the huge butterfly!

Do you hear those gorillas Dad?

Dr. Radar changing out his button. Hooray for size 2.3!
Oh and I've heard from several people that the donation button isn't working right now. I'll see if I can fix that as soon as we get home, maybe after a nap...

1 comment:

  1. You might already be doing this but just in case: It might be good to start paying attention to the textures and smells in Ollie's life so if his sight keeps going he can find comfort in the feel of a certain blanket with which he is familiar or in the smell of your shampoo/perfume. If you keep consistent with texture and smell he might be able to find comfort in those things later on. Just an idea. Sending many prayers your way and thinking of you all often.