Now that we are back to Sacramento we are back to our "normal" routine of doctor's visits. This morning, though, Mommy met with a person from Medi-cal from my annual review. There wasn't much to update as not much has changed from a year ago - I still have a trach and a g tube so the hours I qualify for nursing will remain the same. Once I do get my trach out though, I will still qualify for some nursing hours just with the g tube so that was good news for my parents.
In the afternoon, Lucille, Mommy and I went to the UC Davis MIND Institute to meet with a geneticist, Dr Herman. She just wanted to follow up since genetics hadn't seen me for a year. There isn't much new that she could tell Mommy - there still aren't any tests to determine how I got Nager and there aren't any new clinical trials being conducted that Mommy didn't already know about. I did get a weight check and with clothes I was up to 18 lbs 9 ozs. Tomorrow I have an appointment with the GI so they will get an updated weight without clothes to see how much I have grown since the last visit. Mommy is just relieved to see that I have gained a little something through all the formula trials and tribulations of the last few months. While we were meeting with genetics, I found a little kid's chair and figured out how to climb up into it - just like climbing stairs! Now that I am walking, I am all over the office during appointments, Mommy is having a harder time than ever keeping me entertained. The geneticist who saw me while I was in the NICU and met with my parents initially, was in the office so she came in to see me with Dr Herman. She was happy to see I was doing so well and doesn't often get the chance to see her "babies" all grown up. I showed her some of my signs and my new thumb. Mommy is going to follow up with endocrinology about my growth and with prenatal genetics if she and Daddy plan on having other babies to get a high resolution ultrasound early on to look for Nager.
I have been slowly getting over my cold. My parents have continued with my twice daily breathing treatments and they think that has been the key to the cold not being as bad as the last one. During the breathing treatments, though, Mommy has to find some way to keep me occupied. So now she gives me a canister, a spoon and a bunch of Splenda packets and I am happy for the time it takes to finish the treatment. Since I have had a trach mist from the beginning, the nebulizer treatments don't bother me too much - I am used to stuff blowing in my trach!
Peyton Nicole Smith