After my post about Google Alerts, one of my very sweet blog readers offered to set an alert for Progeria and filter out all the negative stuff, sending me only the helpful information. This has really worked well and I ended my alerts for Progeria. Unfortunately I forgot to end my alerts for Mandibuloacral Dysplasia. I received an email early this month with an alert and saw the name Dr. Garg. I was intrigued because during our last conversation with Dr. Gordon she encouraged us to explore all of our options (as limited as they may be) including contacting Dr. Garg to inquire about their progress. Finding the time to sit down and read these types of articles is tricky because it requires a great deal of concentration on my part. It is still all so confusing to us. Anyway, Mark is content with our current path (although he is anxious to get to Boston again and feel like we are doing something) and has no desire to inquire elsewhere. He has no doubts that we are in the right place. He brings me back to reality by reminding me of our initial thoughts and feelings about the hospital environment during our Univ Southwest Texas trip. He does, however, give his blessings to reach out to Dr. Garg and find out where they are at in their research. Anyway, I am bloviating* about things that do not matter so I will try to cut to the chase.
Last night when I couldn't sleep I was checking my email on my new toy from my uxorious* husband (an Iphone!!!). I checked out the alert and the article it sent me to, sent my heart to the bottom of my feet. It has pictures of our boys from our visit three years ago. It has those awful naked pictures of my babies with black over their eyes. I stumbled on these a couple years ago but nothing prepares a mom for seeing them again. I went back and forth about sharing this article because I do not want anyone else seeing these pictures of our boys. It makes me feel very vulnerable but the content of the article is good. It provides many of the details that make our situation unique. So if you have time, energy and are interested, take a moment to read it and try to ignore the pictures. I tried to find a text only version but was unsuccessful. It is interesting how it talks about the medications and the unknowns as to the potential outcomes for our children. An aside, I can't believe it has been 3.5 years since that trip. Our boys certainly have grown since then. I remember Nathan had just turned four and was starting to go on the potty. The other interesting part of the article is the inclusion of prematurity as a symptom. When we were there discussing this, they were not sure if prematurity was related to MAD but in the article they name it as a symptom. I am not sure how they came to this conclusion.
*On Christmas day I tested the family with some old Readers Digest Word Power words. We promised my brother in law that we would try to incorporate these into our daily vocabulary. I hope I used them correctly! The only other two I can recall are "legerdemain" which means sleight of hand and "bumbershoot" which Nathan now knows because he got one for Christmas.