We’ve had a day!

Let’s paint the pretty picture…first day back to school (not too much drama this morning–she was pretty good about it). First day back to therapy–Jack decided that he wasn’t feeling quite up to therapy today. He pitched a royal fit and refused to even look at Wendy the Wonderful. His legs are somehow worse than they’ve been in awhile. He fell on the treadmill and just trying to walk a straight line…several times. He fell with me 3 times just trying to get in the door!

Then….we had our neurologist appointment. It didn’t start out well. The receptionist stole my insurance card, and when I went to ask for it back she said, “I don’t have it!” I said, “yes you do, I see it right there!” She says, “that’s not yours!” So I grab it and say, “well, I’ll be doggone…my husband must have another wife!” I got my card back. So I went and sat down…a little bit later, a quite exasperated nurse calls us. She asks why we’re in the wrong office. I said, “nobody told me to go elsewhere!” The receptionist took that moment to speak up and announce that she told me where to go and I didn’t listen. I bit my tongue hard because I was about to tell her where she could go too!!! I know that isn’t nice, but I’ve totally had it!

So we get back there and Jack is weighed and measured and all the bells and whistles blow—-oh he’s so small and skinny and his head hasn’t grown…all the stuff we already know! Dr P has hired a nurse practitioner, who is GREAT! She came in (he must have sent StoneFace the Resident back off to Emory) and talked to Jack and me and said she’d be back with Dr P. They both return and Jack is happily spinning the chair in circles. He’s been doing that since we walk in the door.

Dr P asks how the new meds are working. I tell him clearly not well…as evidenced by the incessant circles we’re making, and GOD forbid we stop him! Then, Dr P made the fatal mistake of asking about Jack and his hats. I told him that the hats have been like his skin forever! He said he didn’t see a hat the last time (and truth be told, he had the hat off when he examined Jack last time, Alissa had pictures). I didn’t know this at the time. I said, “I’m sure he had it on…he sleeps with it on, we go everywhere with a hat!” So we’re laughing and he says to make sure I buy lots in case we lose one—blah, blah, blah…then, he reaches over and takes the hat off of Jack. WHY????!!!! I don’t know…I am not responsible for the reaction. Yet I am. Jack turned, lunged, and began pummelling Dr P. When Dr P didn’t give the hat back, he bit him.

(At this point, I think I had an out of body experience. I was secretly praying that the Rapture happen. RIGHT THEN! Lord, Please, come get me! Then I kept thinking, OH Heather, please grab the baby! Reality struck me….) I grab Jack, and had no clue what to do—I grab the hat and put it back on him, and he’s sobbing, and sobbing….

We got a new prescription. And, we were told if it doesn’t work pretty darn quick, to call him, and he’ll change it over the phone—no need to have another appointment next month. He’ll see us in March. Hopefully, by then, his wounds will have healed.

So, now we’re home. And I am watching him sleep. He seems so good when he’s sleeping. He seems very normal. I feel like the bigger he gets, the less control I have. Dr P said that kids with cocaine have a real hard time with consequences—they lack the ability to understand. And it’s true. I know…and it’s becoming more and more obvious that Jack isn’t “normal”. He’s not developmentally on target at all. He still can’t sort shapes very well. It’s just too much…I don’t want to talk about that…
AND–as if that wasn’t enough! First, Jack’s Durable Medical Equipment place (where his tubing supplies, and food comes from), called and said that we don’t have insurance. Which is crazy, right? Well they eventually found out we do have insurance, and, in fact, it’s the same insurance we had a week ago when they looked it up–it hasn’t changed in 11 years! However, because it’s the blessed beginning to a new year, we owe them $1003 before they will deliver his supplies. Never mind that he will die without them. Pony up the money and do it today. So, I am in a bad mood and I just want to cry.