The next morning, Cereal Killer woke up bright-eyed and bushy-tailed well before his brother so, I took him down to have breakfast. I learned how fascinating a commercial waffle maker can be to a four-year-old. I swear, I don’t need a TV. I just need a waffle iron that beeps.
After getting everyone up and at ’em, (Rain Man was less interested by the waffle iron but more interested in the contents of the iron. ) we headed out to the Ann Arbor Hands-On Museum. I was gifted with free tickets to it so, I was super excited to go. (Thank you, Jill!!) The only thing that didn’t excite me was the fact that Ann Arbor was experiencing monsoon season and parking downtown is…less than optimal. Especially for kids.
Well, we got there. We were rather wet, but there. The kids, surprisingly, remembered coming to this museum the last time we were in Ann Arbor. The last time we were here, they were 2 years old and it was the trip when they had their tongue surgery. So, they remember the surgery. That broke my heart just a little because I didn’t want them to remember it or have lingering fears about the hospital.
We got there around noon and immediately took Rain Man to get his blood work. He was having a blood draw for genetic testing to rule out Beckwith-Wiedemann in Foodie. (Long story but it somehow involves sending blood to Canada. I have no idea.) Well, Rain Man was not down with that plan. I warned the phlebotomists that he was a fighter but, they didn’t believe that sweet little red head could be too big of a problem.
It took four adults to hold Rain Man down and get that one little blood draw. He screamed as loud as I have ever heard him. The phlebotomists looked shell-shocked by the time we left. Hey, I warned them…
“He doesn’t like that,” Cereal Killer said gravely in the waiting room.
After the Big Poke, I lead the herd down to the cafeteria for lunch. I chose the WRONG time to go there. It was lunch hour for 90% of the hospital staff so it was insanely busy and loud. I was anxious as it was because of all the stressful memories this place has for me during the boys’ first surgery. I was trying to stack the tray with everything we needed for lunch and ended up dropping my tray. Twice. By the time I fought my way to our table, I was nearly in tears. Yes, over a cup of tater tots and a bowl of hummus. So, the boys ended up eating while I tried not to meltdown. Amazing because Rain Man is usually the one to melt down in crowded, noisy, stressful places. I guess the apple really doesn’t fall far from the tree.
“What’s with the M’s?” asked Rain Man as he mowed down a PBJ sandwich. I thought he was talking about candy and I was about ready to shoot the person who had candy near the boys because if they see them, they want them. “See? They all have M!”
He was looking at all the maize and blue M’s on the name tags of the staff. I was amused that he noticed that and relieved that I didn’t have to explain for the 800th time why he can’t have M&Ms.
After lunch we found out way through the epic maze that is the U of M hospital and got to our clinic waiting room. It’s a pretty sweet waiting room. It has a felt wall with shapes, coloring books, a TV permanently tuned to Nick Jr., and even a slide. It’s an excellent place to wait for a long period of time. The exam rooms, on the other hand, are very spartan. (Ha. Get it? Spartan? U of M….Wolveri….nevermind.) There are no toys, no reading materials. Just expensive medical tools and a sink.
Just guess where we did most of our waiting.
Our appointment was at 1:30 so the nurse diligently deposited us in our exam room right on time. Unfortunately, the doctors were running 1 and a half hours late.
It was an absolutely torturous 90 minutes in that room. I was about ready to blow a gasket when the doctor finally showed up. I wanted to take him to task and inform him we had a 9 hour drive ahead of us and why the SMACK were we put in this stupid room when the nurses knew you were running late?! But, I chickened out because I wanted to stay on good terms with him. It does no good to piss off the only plastic surgeon with experience in your particular syndrome within driving distance, you know?
So, the doctor decided he didn’t want to do anything with the boys’ tongues as of now. That was a relief. But, he did want Rain Man to see the orthopedic specialist ASAP and have a sleep study. (He may be experiencing sleep apnea because of his tongue. If that is the case, he will have another tongue reconstruction.) He also wants them to come back in February for a full day of tests and studies by the full genetics team. (I can hardly wait…)
We didn’t get a whole lot of answers but, the “no surgery for now” answer was good enough for me. For now. I will worry when we get the appointment with the orthopedic specialist. Until then, I just relax and love my boys.
Tomorrow, the trip home…