This is my first journal entry on our new site! I am excited about our site as I think it will be a great way to update our family and friends on Carmen’s condition. For the past couple of months, I have poured over the dozen or so personal sites about children with Tay Sachs. These are precious children and their stories have helped me immensely and I hope that this site might be a help to someone.
Today Carmen had her weekly physical therapy appointment and was more alert and active than usual. She perks right up when her physical therapist arrives! Her physical therapist let us borrow a massager to use on Carmen’s chest when her breathing sounds junky.
Carmen is having trouble eating this week. Today she ate breakfast but no lunch and only a few bites for dinner. She would not open her mouth for purees. I suspect she is losing the coordination to eat and it is exhausting for her to try. She did drink three bottles of formula today although much of it ended up on the burp cloth. I may try purees in the Sassy Infa feeder bottle tomorrow. Most of this week went like today so I suspect Carmen may be seeing her Gastroenterologist before her end of November appointment.
Today Lauren said, “I love Carmen more than the whole world!” I treasure these moments! A friend at MOPS commented that Carmen gave Lauren the opportunity to be a big sister. I hadn’t thought of it this way. I’ve cried buckets of tears thinking about how sad and lonely Lauren will be when Carmen is no longer with us. But, right now Lauren has a sister to love and hug and kiss and share her life. Lauren wants Carmen to be a part of everything she does, even if that means Carmen just lies next to Lauren while Lauren plays dolls. I often think that Lauren is learning a very valuable lesson early in life- to accept people just as they are.
Well, it’s late and time for bed! Goodnight.