Through the Eyes of Babes

I know, that's not the exact saying, but its appropriate in this case. My son's first creative writing project is due tomorrow for his new school. He had to write a few paragraphs on what he did this summer. You remember that assignment, don't you? Here's the text from his story, aptly titled "My Summer":

"I spent most of my summer with my best friend Brody because my sister Rory was in the hospital. Brody and I did many fun things together. Some of the things we did were, went to the beach, we also visited the aquarium and zoo. My favorite thing we did together was go to Seaworld.

Sea world was so much fun! We saw a dolphin show, a clown show and the Shamu show. There were tide pools and I got to touch a starfish and feel the gross sticky skin of a sea cucumber. My favorite thing we did was to ride on Atlantis. The ride was awesome because it was scary and thats what made it fun. When it was time to leave, we got to see fireworks that the park does before they close. I had a great summer and the best part was when my sister came home from the hospital."

The second half of the project was to create diorama, collage, mobile, or some other means of illustrating the story. When Reese suggested that he wanted to do a mobile like those that Rory is so fond of, Dad joked we could even motorize it. Apparently at 9 years old, kids still think their parents can do anything. I guess I'm not ready to let go of that perception just yet, so check out the video to see how it turned out.

Video quality isn't so great, but those are pictures of all the fun things he did hanging off the mobile. And at the top are fireworks. It was a family collaboration to be sure.

Latest and not so Greatest

Not much new to report these days. The information comes in slower and slower. We have extreme ups and downs, sometimes weekly, sometimes daily. As we continue to fumble through this mess, we're not sure where the end of the road lies. But we prod along, and self correct volumes, ratios, and feeds as we see fit in order to prevent Rory from distending to such a point that we end up back in the hospital. So far, so good. But our patience runs thin, and our hopeful expectations run low.

At Rory's last pediatrician visit, they told us she is showing signs of Left Sternocleidomastoid. "Oh no, what now!?!?!" you surely cried in outrage and frustration. Left SCM simply means that she has a tight neck muscle on her left side which causes her to tilt her head to the left. In severe cases (which she is not), a helmet-like contraption is required, along with daily sessions of stretching activities. Two separate stretches, five times a day, three reps each.

Instead of all that, we need to do the stretches twice daily, and see a physical therapist. Frequency unknown at this point. Because of this preferential tilt, she can also start to develop a mis-shapen skull from keeping her head in one position while on her back.

What next?

Around the World in Rory Days

Thank you, Anonymous Irish, for your comment in the post below. I'm sorry to hear about your daughter and wish our situation offered more conclusive results for others to draw upon. Admittedly, our docs are at a bit of a loss, but one thing the surgeon has said all along is that they don't want Rory's issue to be carried into her toddler years, where she would eventually start asking us why we have to rectally dilate her to make her go poop. We are very much still in the process of trying to figure it all out, but it is clear that if this process stalls, it will turn surgical. My memory wanes the longer we're out of the hospital, but I seem to recall what seemed like two diffent surgeries that were being considered. The first was simply the pull-through procedure similar to the Hirschsprung's 'easier' corrective surgery. The second was what seemed more like cutting an o-ring and sewing it back together, but instead of a piece or rubber, the o-ring is the sphincter muscle.

At this point, all I can offer with certainty is that Anonymous Irish is right to be investigating this on their own. I just wish this blog was not near the top of the google list, because it demonstrates how little information is available out there. But this advice is for anyone with a loved one in the hospital for any reason: do not assume that your doctors are completely familiar with, or knowledgable about your particular ailment. Question them at every turn, with questions based in fact and research. Make them think about their decisions and the long term ramifications of those decisions. And if you don't like what you're hearing, speak up about it. We have been very pleased with the doctor's we've had on our case, their communication, and their forthrightness about their limited knowledge. But I suspect our continued involvement and repeated badgering didn't hurt our situation either. If you are not pleased with your doctor, then it may be time to get a new doctor.