MOMS Follow Up, Day 2

So I spoke too soon about Nate being such a pleasure to travel with. After he woke up from his nap yesterday evening, he was hungry and cranky and would. not. stop. crying. I thought I was going to pull my hair out. I told him he needed to stop crying so we could go to Chili's (this tactic usually works eventually, plus he likes Chili's), but he just couldn't. We got a few steps down the hall and he collapsed in a tantrum, and people were peeking out of their doors to see who was beating their child. After about a half hour of screaming, I finally got him out to the car (whining and crying the whole time), and then there was no way I was taking this child into a restaurant. So we went through the Wendy's drive through for chicken nuggets. Nate ate one nugget and said, "I happy! Go to Chili's!" Um, no sir.

This morning, by breakfast Nate was already getting tired and cranky, so I knew it would be a rough day. We were supposed to meet with the examiners from 11-3 (which is noon-4 our time, aka nap time), but they got us in an hour early.

First they did the physical exam, and I was proud of how well Nate cooperated. They video'd him walking and crawling, and the examiner tested out all of his muscles. One interesting thing she found, which the PT also found last week, is that Nate's right leg is slightly stronger than his left. The reason that is funny (funny strange, not funny ha ha) is that his right leg has always been the slower one to catch up. When he started crawling, he didn't want to crawl on that leg. When he started weight bearing, he kinda lifted that leg. Even now, when he gets tired, his right foot turns outward while he's walking. Yet it's the stronger leg. Hmm. That Nate is always full of surprises and mysteries. Anyway, she estimated that his functional level is S1, which is what they told us at 12 months. That's very good--that means he functions much, much better than he should based on his actual level (where the opening on his spine was) of L2.

Next they did the developmental exam. This took a long time, and Nate didn't cooperate with some parts, but overall I thought he did great for the circumstances. He stacked some blocks and matched some shapes and was able to tell her all kinds of things about the pictures she held up (the names of things, what the children were doing in the pictures, which thing you use to eat with, etc.). After she was done and she had gone over the test and was getting ready to leave, I asked her how she thought Nate did. She said, "Oh, I don't score the test at all, so I really can't say. All I can tell families is that if you have any concerns you should bring them up with your child's pediatrician." What? At 12 months, a different examiner told me that she doesn't score the test but she gave me her general opinions about what Nate does well and where he needs improvement. And my friend who just took her son down for the 30 month follow up a few months ago said the examiner told her all kinds of stuff about her son, including his IQ score! And yet this woman couldn't tell me anything. It's not like I have any concerns that aren't already being addressed with his massive team of therapists, but it just stinks because we spent 4 hours doing all this testing for the study, and we got nothing out of it, not even a little information.

By then it was 2 pm (central) and Nate was beyond needing a nap and lunch. I took him to the Food Court, where his mood rapidly deteriorated. While standing in line for Subway, his crying turned to screaming. Nothing I did or said could calm him down, so I just stood in line and ignored the screaming--it's really the only thing to do, the kid had to have food. But it seemed like everyone in the Food Court was straining their necks to see whose child was screaming and why their mother wasn't doing anything about it! Finally, a saint who works at Subway handed me a cookie! Ahhh. That held him over until we got the food. I rushed him over to a table and tried to get him set up in a chair with some food while also trying to balance the umbrella stroller with bags and the walker hanging on it, and it crashed to the ground three times. Here I am, pregnant (and I'm obviously not yet hugely pregnant, but I was wearing a maternity shirt and I think most people would at least suspect that I'm pregnant) with my screaming, disabled child, and I'm doing the best I can while the stroller is falling all over the place ... and not one person, not even the man sitting within arms reach of us reading a book, offered to help! What is wrong with people? I honestly don't want people to help us most of the time, but it was very obvious that things were beyond what I could handle at that point, and no one but the Subway saint could bother to help us.

Anyway, Nate got some food in his belly and then passed out in the car for nearly the whole trip. Blake got home about 15 minutes after us, and the first thing Nate said was, "Daddy! Big hug!" He was so happy to see him. He wanted Blake to get in the floor and play cars with him, and while they were both sitting there playing, Nate was being silly and started shaking his head all around. He said, "I crazy! I gonna go crazy!" Ha! I laughed so hard! Where did he learn that?

So we're glad to be home, and I don't plan on taking any trips like that without help anymore!