After a much needed nap, we felt good enough to dare go out. I know a couple of other families with kids in the Intestinal Rehab program at Seattle Children’s through my online support group. So, we headed over to University Village to meet one of them. It was raining, but Seattle’s made for rain and there’s a decent little indoor playground there. It was fun to visit with the other mom over a light dinner from a coffee house and swap stories about Short Gut and adoption. (Her son was adopted, too.) And Patrick thought having daddy help him on the playground was great fun, too.
Playing in a display curtain at the EMP
We grabbed some cupcakes at Trophy Cupcakes, then headed up to a park on Queen Anne’s Hill to give Bailee a good view of the city and space needle.
We were going to eat our cupcakes there, but the rain had turned bitter and cold, so we just went back to our room and got Patrick ready for bed and ate them after he slept instead.
And speaking of sleep, after some very harrowing vacations in the past year, we finally learned how to help Patrick sleep in a hotel! So well, in fact, that he was fine with the fact that he was able to ignore the fact that he was sleeping on the floor of the same room as Bailee.
So here’s the discovery. First, I mentioned the air mattress. Having Patrick comfortable with his bed was a big plus. As was the fact that it was just right for me to lay down with him while he fell asleep, and then slowly roll out onto the floor next to him and sneek away. Second, we drugged him. Not with cold medicines. With melatonin. A GI fellow prescribed it for him last time he wasn’t sleeping in the hospital. And when I asked if I could use it for travel, he not only backed the idea but was downright excited about it. The smallest possible dose is enough to help Patrick fall asleep within half an hour and keep him sleeping for 8 hours straight. At which point he is decidedly awake. So, yes, he was up at 5 a.m. But he slept all night!
Wednesday morning we had a developmental study at the University of Washington. One of the surgeons here is researching how intestinal failure affects development. So we met with a developmental pediatrician and a developmental psychiatrist. They did a test to determine his current developmental levels. We’d heard reports of how boring and useless this study was, but for us, well, it was just like all the other developmental studies Patrick has ever had done. Except he was sleepy and extra uncooperative and probably got a lower score than expected. He also surprised us by doing some things we didn’t know he could.
In the end, we actually got some good information from the visit, which I’ll cover in my next post “What the Doctors Said.” Suffice it to say that this once, we felt that it was worth the cost of the extra day of travel and the three and a half hour appointment.
We left our appointment just after noon and went to pick up Bailee at Pike’s Market, where she’s spent the morning. The combination of bad GPS directions and my confusion got us a little bit lost along the way, but we eventually found her, then found lunch, then found our room for a TPN delivery and a good nap.
We went fancy for dinner that night. We took Patrick on the monorail, and then walked to a Tom Douglas restaurant called Cuoco. Brian was very excited to find arancini on the menu and Patrick loved the beets and allergy-safe spaghetti.
On the walk back to the car, though, a light drizzle turned into a bitter cold rainstorm. We were two blocks from the garage when the street we were on crossed a major road and we couldn’t cross. We ended up detouring a few block more out of our way and we were all bitter cold by the end.
The next morning, we got up early and packed our room. Two nights in a suite on Lake Union was about all we could afford for that trip. Besides, we had an invitation to visit the Laylands in their new home.
With a morning to kill, we decided to visit the Experience Music Project. They had some really fun exhibits. In the Avatar exhibit, they have a magic touch screen table that, well, I don’t think I can give justice in describing here, but if you have the chance, check it out.
Patrick tried on these really big shoes.
And Brian stepped into a scene from the movie and got to be animated.
Then we went up to the sound lab on the first floor. Patrick played a bit with the keyboards and guitars, but took best to the drums. Is that a surprise? He and daddy had a jam session on a real drum set.
After the museum, we grabbed some lunch, dropped Bailee at University Village, hurried up t the hospital to meet up with another Short Gut Family we know there. Then, after our clinic visit, we headed up to the Mukilteo/Everett border where Lindy & Kelly are finally feeling settled into their new house.
It was so good to see these friends again! And an added treat to meet their new baby boy. This little boy has had his own set of health problems and challenges and Lindy and I have found another dimension to our friendship as we’ve shared our sons’ trials. It was good to get to experience him in person.
Our visit to the Laylands included some homemade stir fry noodles, a trip to the Woodland Park Zoo where Patrick and Lauren fed real dead fish to real live penguins, a burrito the size of a baby, a lot of Wonderpets, a visit from Befana, a toy-binge for Patrick in Lauren’s toys, and a kids-free date night facilitated by Bailee.
And it seemed to all end too quickly.
We flew home Saturday afternoon. Due to some plane shuffling and our tickets being purchased on different days, only Patrick and I were seated together. Can I say, though, that it was nice to have some one on one time with Patrick. The flight attendants made Patrick stay buckled in his seat, but were also very good with him and he enjoyed his big boy flight. We watched his birthday movie at least 4 times. (My new phone has a screen lock function that makes it perfect for Patrick to watch movies on.) And we played with stickers and cuddled.
And at the end of it all, we celebrated Patrick’s gotcha day by snuggling down as a family all safe and snug in our own beds in our own house.
Patrick Hoopes 