The overall theme of this past week was COLD! Ethan and I did our best to stay home and out of the nasty weather. Is it bad that I’m already looking forward to spring? On Monday our dietitian, Jen, came to our house. I am so thankful that our Early Intervention (EI) support team comes to us. This is so wonderful, especially now that it is winter. Ethan weighed in at 15 pounds and 1 and ½ ounces! He was 26 ¼ inches long! Jen was so pleased with Ethan’s progress – his weight is in the “average” range now. We are hoping that if we can keep him healthy and eating that he’ll be able to make it to 20 pounds by his first birthday. We’ve got seven months – I think we can do it. Since Ethan’s weight was so great, Jen even suggested that we could stop fortifying Ethan’s milk with the soy formula. I decided that instead of completely eliminating the formula that I would simply decrease it and see if Ethan continues to gain weight appropriately. Well, I guess Ethan must have known we were talking ...
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.