What a day! I took the day “off” today. Ha I say, ha. I had big plans to do some cleaning, work on some Christmas stuff, etc. But first, it was time for yet another visit to Children’s National Medical Center with Mr. Jack.
Today was his 6 month study follow up visit, which involved developmental testing, blood work, mommy questionnaires, etc. We had to be in D.C. at 8am which I won’t deny was a challenge for us. The day started with Jack standing next to my bed at 5am asking to see a picture of a colossal squid on my phone. It is the new obsession, or as I like to think of it, side obsession. Airplanes will always rule and he will always come back to them, but sea creatures are a secondary hobby for him. Right now, colossal squid rules, and it is with the fervor of any of his new interests- very, very intense. He is driving us crazy right now, but on the plus side, the toy he wants desperately for Christmas is $17. Score!
Anyhoo, Jack had two meltdowns before we walked out the door because I took the ipad from him- little did he know that I was downloading a program for him to watch in the car about colossal squids. Once we got in the car and I told him, he was fine, for a while.
We made it in time, and the visit for the most part was pretty smooth. He showed literally everyone in the hospital the picture of the colossal squid and I can say with confidence that the research nurse was tired of hearing about it at the end of our visit (about 2 hours). I wanted to laugh and say, he’s just getting started! We are girding our loins over here for an intense next few weeks. He is reaching the level of obsession where he doesn’t sleep much at night. The level where he corrects every statement anyone makes about the topic- and he is correct. I was joking with the nurse at the end of our visit and said “and this is why when someone else says, hey my kid is obsessed with such and such too, I want to scream that they have no idea what obsessed even means”. She agreed wholeheartedly.
I always put EMLA cream on the boys’ arms before a blood draw to minimize any discomfort. Jack still has a pretty high level of anxiety though and it is a challenge to keep him calm and ahem, polite during these procedures. Today he started out yelling at the phlebotomist “that’s not pointy, you’re not using it, you’re not coming over here, you’re not touching me”, you get the idea. When she proceeded, he reached his boiling point and all of the sudden he was SINGING “stranger! Danger! Stranger! Danger!” in the poor woman’s face. Meanwhile mommy and the nurse are ROLLING on the ground. ROLLING!!!! She had to admit, that was one she had never heard before. Oh Jack you kill me.
The good news is that Jack’s weight has finally increased enough that the dose of medication can be doubled. He has been on the lowest possible dose while sitting at the highest possible weight for that dose since May- so we will be looking for changes these next few weeks. When we finished, I drove Jack to school, and went home- to relax.
When I arrived home it looked as though there had been a juice/mitochondrial cocktail explosion. Apparently Nate and daddy had some issues in our absence. So instead of resting I vacuumed and steam mopped the house (I mean upstairs, downstairs, bathrooms, kitchen, everywhere- it was everywhere). I last did this on Monday. THEN I was going to relax.
The phone rang. It was the doctor from NIH. Guess who forgot to draw one of the vials of blood they needed at the last visit??? KILL! These hospitals need to quadruple check which tests they need- especially when the blood draw involves a small child with autism. Hello? If you recall, Children’s did this with Jack earlier this fall. In this case, NIH at least did not ask us to drive all the way back down to Bethesda, they let us go to LabCorp, but they needed the test now. So I picked up Nate, put EMLA on his arms, and took him for blood work. We got it done just in time to get Jack from the bus stop. And then it was time for dinner, and then I made a gluten and dairy free cake for Nate’s birthday. John took one look at my face and decided he would take the boys to OT tonight. Wise choice. So that is why I am posting- I needed to vent.
All of these things are my responsibility, and I am happy to do them. But sometime, I would like a day, you know? Or a nap?
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