Yesterday we had another LONG day down at Primary Children's Hospital. William had an appointment in the afternoon (made clear back in April!) with the Pediatric GI group for his pretty severe reflux he has had since infancy. In the morning, Matt had an appointment with the Neuropsychologist to have some testing done so we can better figure out what his brain is doing.
The results of the all day testing were fascinating. I really wish we would have had a BT (before tumors) baseline of these cognitive tests. This will have to do, though, and we hope to be able to track improvements in his memory. I felt really reassured about his cognitive functioning. He still scored "high-average" to "superior" in all of the cognitive tests. His processing speed is "average" to "high-average" and he did very well in each of those tests. His verbal IQ was 144! This score is after having brain-surgery, heavy-metal chemotherapy, and a brain tumor affecting his memory! 'Normal' IQ is 100, so it is pretty amazing that he scored so high.
The fascinating results were the memory tests. On one test Matt was given a plastic grid with 15 squares and these little round blue chips. He was given 10 seconds to look at a picture of a dot pattern, and then he had to re-create the pattern on his grid. Apparently, he did just awful on this test (which I would have predicted). He couldn't remember any of the patterns accurately. Then they did another test where Matt was shown 48 different faces. He then, immediately afterwards was shown a whole bunch of faces and had to say 'yes' if they were in the first group of 48 or 'no' if they were different faces. In this test, he got 42 faces out of 48! Then they went on to do another task and 35 minutes later came back to the face book. The test was repeated to see how many of the 48 faces he could recall. On this delayed test he got 44 faces out of 48! I don't know what's going on in that little brain of his, but I thought this was so fascinating! Then they did one other test where they told him a list of 15 items they were buying at the store. Matt was then asked what items were on the list. He was extremely inconsistent in this task. He could only remember a few items. Then, the list is repeated several times and he was asked again and again how many he could remember. Normally, people remember more items each time the list is repeated, but this wasn't the case for Matt. His correct answers were totally random (getting 5 correct one time, then 3, then 5, then 2, etc...) I can't wait for the official report with all of the test details (I am just repeating here the discussion I had with the Neuropsychologist). I am very hopeful that his full memory will return, but if it doesn't, I just hope we can find a way to successfully teach this kid who has so much potential!
Will's appointment also went well. I really liked these doctors - they took his situation seriously and are going to be very proactive. We are keeping track of his 'spit-ups' for a month and trying a few things to improve them. If we see no improvement they would like to scope his throat and try to figure out why this has been a problem for so long.
So, that was our long, tiring day! Now I get to go back to SLC tomorrow to meet with Endocrine... (sigh).
P.S. I also made a little bit of a stink to the psychologist about never having met our primary Oncologist. The Neuropsychologist thought this was also odd and took me to meet the office coordinator guy. With his help it was very easy to switch Matt's chemo appointment to the 19th rather than the 20th and make the appointment with Dr. Bruggers. My friend from the pediatric brain tumor foundation told me that the neuropsychologist could work wonders in that department and she was right (thanks, Jamie)! So, in less than 2 weeks we meet our oncologist and can discuss our 2nd opinion with her! Yea!