May 31

Your eye is continuing to heal, but we are going to continue another week of antibiotics to be on the safe side. Today we tried the contacts again--and once again one popped out. This time we found it in your crib, hopefully in time to save it. You are so much more alert when your contacts are in--I love seeing my baby so curious!

This week we received sad news. One of our SLOS friends died mid-April. His name is Mathias and would have been 2 years old in June. His mom says he was doing great, outgrowing the vomiting, always laughing and happy, with his personality coming out more and more. I remember back in January when she wrote to tell us he was not recovering well from his cleft palate/ear tube surgery. She had asked the surgeon to give him FFP, a blood product that is recommended for kids with weaker immune systems, but he refused to even discuss it with the specialists. I was so frustrated for her at the time. Of course, we don't know if that would have made a difference, but it is a shame his mommy has to wonder. He just couldn't get over the infections, and one morning he wasn't looking like himself. As she was packing his food and meds to take him to the ER, he died peacefully in their home. Turns out he had pneumonia which led to congestive heart failure--number one cause of death for SLO kids.

My heart hurts for his family. Even though he had been having a tough time since the surgery, I am sure they didn't see this coming. He only had a temp of 99 the night before! A couple weeks ago you had a much higher temp and after calling the on-call doc, we decided to keep you home rather than risk whatever was hanging out in the ER waiting room. You are always such a healthy baby, I think I must take it for granted. You are such a trooper all the time, I think of you as being so strong. But you are still a tiny baby, and so now when you run a high fever and aren't yourself, I won't risk it and will just take you to Texas Children's. It's inconvenient, but better than waiting it out and regretting it later. Poor Mathias' mommy is blaming herself for doing what any of the rest of us would have done. I can't even imagine her pain, and I pray for her family continually.