It was a busy day for Mommy, Lucille and I. It started with a morning appointment with Dr Long - an endocrinologist at UC Davis. Because I am so small, my pediatrician thought it would be a good idea to have an endocrinologist check me out. I weighed in at 19 lbs. 8 ozs. Just can't seem to break that 20 lb mark! After doing some internet research, Dr Long couldn't find any publications or documentation of children with Nager syndrome getting growth hormone injections. He told Mommy I have many reasons to be small that don't include my syndrome - my heart condition, my g tube, my many surgeries, my reflux..... At this point there isn't any way to know if the reason children with Nager tend to be short is due to the syndrome itself or all the things that go along with the syndrome. Just based on my parents height, I should probably be around 5'7''. To determine how tall I might be, they generally do measurements of the hands and fingers. Since I have abnormalities in my fingers and wrists - Dr Long isn't sure how accurate any of those measurements would be. He is encouraged that despite me being so small - I am proportionate with height and weight combined. That is probably a good sign that I don't need growth hormone - just that I have other factors contributing to my small stature. He wants me to get some blood drawn to check out some things and come back in six months. Since I am having surgery in two days and need all the good veins I can get, Mommy is going to find out if they can draw my blood while I am having surgery and send the results to Dr Long so I don't have to get poked twice (plus I can have it done while I am under anesthesia and I won't remember it!)
Mommy, Lucille and I then walked over to Shriner's (it's across the street from UC Davis) to take photos and xrays of my hands. I was not in any mood to have photographs taken and had to be held down. One benefit of all the tears, though, I got a beanie baby dog named Crinkles to take home with me. I was much more calm for the xrays! Mommy and I had gone up alone to get the photos and I kept signing something - eventually Mommy realized I was signing Lucille's name sign (an L with the sign for nurse). I wanted to know where she was!
Outside of Shriner's we ran into Jeannette who was the nurse in the NICU that helped my parents with a lot of the training on my trach and g tube. She was sick during my last craniofacial panel appointment so we hadn't seen her in quite awhile. I have gotten so big since the NICU days!
Right before bedtime tonight, I got a big surprise when my Papa Smith showed up! He has come out to visit me for my surgery. He was a big help when I had my jaw distraction and I was all excited to show him how much more I can do since he saw me at Christmas. My brothers remembered him too, Chili took to him right away. Henry was a little more standoffish -but then Henry is that way with everyone. With all the excitement of Papa showing up I was in no mood to go to sleep and it took me until almost 10 pm. I need my rest, though, with surgery coming up Thursday morning.
Since Daddy accidentally deleted a picture Mommy took of me today after I ate my green Playdoh there is a video posted instead of me dancing at the NICU on Sunday. I really can groove!
Peyton Nicole Smith