>> Tuesday, September 29, 2009
I got lucky on Friday. REALLY REALLY lucky when I got a referral to Dr. Rope at Primary Children's. He, and his staff, where fabulous! Simply fabulous. We took Tay with us too. When we got there Bug colored on the table. Literally, on the paper and then on the table. Oh yippee.
They called us in and we gleefully went into the exam room. Bug was not too keen on sitting anywhere. He wanted to roll around on the floor so we let him. Like Madonna.
Several people came in before Dr. Rope and did 'things'...checked his height, his weight, his BP, which was wonderful. And then we talked to Julie. She took his history and our history and pictures of the whole family.Tay liked this, Bug did not. THen she left, we waited and Bug pooped. I mention this, not just for my own perverse pleasure of people knowing that he poops A LOT and I change more diapers than a nursing home CNA, but it has a purpose.
Dr. Rope came in, Bug immediately ran up to him and Dr. Rope picked him up. Bug leaned in to him and Dr. Rope smiled: Friendly guy isn't he? Bug got down and Dr. Rope sat on the table crossed legged. I beamed...I had been doing that the entire time Julie was quizzing us. So, of course, I liked him. He began with the questions about Bug's birth and we naturally progressed to his current status. He had decided, prior to entering the room, that he wouldn't do any chromosome testing and, I think I can safely say, that Glenn and I were NOT gonna allow that so we worked him over. A little. VERY little.
We described all that was going on with the little man. His larger than normal fontanel, the seizures from when the fontanel closed at almost 3 years, the interest in dirt and feces, the no talking, the regression, the type of seizures, the size of his hands and the tall instep, he dismissed the simian line...which is unfortunate because he has it on both hands and it's impressive. When he started adding all the details to the list of signs and symptoms, he changed his mind about the chromosomal analysis. Yea our team.
We could tell that Dr. Rope was VERY interested in Bug. We discussed how he appears COMPLETELY normal until you try to talk to him and how he can catch a falling object. I have seen him knock a cup off the table and catch it mid-air. THIS made Dr. Rope raise an eyebrow. One does NOT expect that type of response in someone who has slow alpha waves. It's pretty unusual. And then there are the fingers. He has broad palms and short fingers. At first Dr. Rope thought it was just his pinkie fingers that where short and then Bug rolled over onto his stomach and placed his hand directly in front of Dr. Rope, who had moved onto the floor, and splayed his fingers out for several seconds. It was perfect. It was at that point that he decided to do the testing.
But first, we need a urine sample. Here we are a week later and we STILL need a urine sample...but I will get it today if I have to duct tape a baggie to his body! After the urine sample we will do the chromosome tests..this will take a very long time and Dr. Rope was hoping to narrow it down first but...that probably isn't gonna happen unless his research leads him to something curious. Of course, I am looking up all the things we discussed so that the next time we meet, we can say: check this first.
Here's where the poop happens: as we finished and Dr. Rope was leaving, Bug pooped. I stopped the Dr. and asked him to add this dirty business to the list. He said: It could be he is constipated and the 'stuff' is just leaking around the blockage. I laughed...and he smiled. I said: OK, how can we test this theory? He got out his notepad and said: Have an X Ray before you go! I said: And if that is normal can we add metabolic or calcium issues to the list? Because when I give him calcium he solidifies more and I only change 2 or 3 a day instead of 6 to 10. He said: If it comes back normal we will add it to the list. Hooray!
So we stopped on the way out and they X Rayed the little pooper. Holy crap that is cool, ask for it and get it. Glenn was peeking and said it looked normal to him so I have to email and find out the results and you know, break out the duct tape and get that urine.