Monday, October 9, 2000
Today was a very busy day. I met several new doctors, had an ultrasound of my head and pelvis, and got poked quite a lot. The ultrasound from my pelvis showed that I have a horseshoe kidney. It seems to be working OK because I have been peeing enough. The doctors had a really hard time getting a special I.V. line called a PICC line. I got poked quite a lot before they finally got one in. Mommy and Daddy felt really sad about how many times I was stuck with a needle.
My pediatric ENT doctors diagnosed me with Pierre Robin Sequence, which basically means that I have a very small jaw and a cleft palate. They are going to evaluate me in more detail on Wednesday to see if I will need to have a trach put in. They will also be doing a hearing test at some point.
A pediatric neurosurgeon also took a look at me today. He wants me to get a CAT scan and an MRI to see my neck and spine in more detail. No one really can tell for sure what is wrong with my neck and spine. Mommy and Daddy are really worried about it and are anxious to hear the test results. They have me on a special board with my neck propped up to prevent any movement.
I had my eyes covered all day today and was put under a special lamp for jaundice. It was kind of like being in a sun tanning bed