Yesterday was a hard day. Who am I kidding, I can't seem to pull myself out of not having a hard day, but yesterday I was looking in Lila's mouth and noticed it was bit bumpy. After washing my hands (we are very germaphobic at our house right now) I felt around and yep, Lila has her first tooth coming in, smack dab in the front, bottom left. Tears started to pour. I don't want her to keep growing physically if she isn't making developmental strides. I called Quinn to tell him. I got out Lila has her first tooth before I started sobbing. Pour Quinn get's these phone calls at work a lot. Good thing he has an understanding boss : ) It's so hard. Already people are making comments on the street like, wow she is really tired huh? or It must be nap time. When it's not. Lila is just Lila. What do you say?
Lila is still acting out of it. She cooed for me on Saturday, I jumped up and started screaming (maybe why she hasn't done it since) but no smiles and not a ton of looking. A dear friend of mine Sandie, who has a 17 year old with ACC and who found me just from this blog and has since become a wonderful resource, told me that she knew of other kids who seemingly checked out during steroid therapy. I really hope that is just what is happening. I really hope that the EEG on the 23rd will show improvement and then we can wean her off and she will start to perk up.
Sandie also sent me to a woman's blog who has triplet boys who one has ACC (Ageneis of the Corpus Callosum) and had infantile seizures who also did the steroid therapy. It was sad and yet made me hopeful to look at this little guy, he is 2 now, walks with a walker and has trouble communicating, he used a computer to communicate, but he looked like a happy little guy who also played with his brothers, had favorite toys and loved his mom. I hope that is in Lila's future, that there are no underlying disorders or syndromes that we have our answer and that she will just take her time.