6/13/09

Well it has been quite some time since the last post. We've been very busy with lots of different day to day things. Since the last post we've had a visit with Lily's DAN Dr. which was promising. Her urine and stool tests came back better than before, but still a lot of yeast. We changed antifungal medications (for the third time). Since stopping the last antifungal Lily has really improved in several ways. She is much less hyper, has a greater attention span, etc. That antifungal really did a lot to her system. I hate trial and error, but there really is no other way.

Lily has not had any seizures that I have noticed, though shortly after the last post she did wake up gasping for air twice during one of her naps. This could be sleep apnea or seizure related. I happenrd to be looking at her when she did this, both times crying afterwards but able to get right back to sleep. I don't know how often she does this, but she does often wake up crying in the night (and always has).

We've cut down on her therapies, because at this point I believe that her sleep is her best medicine for improvement. For whatever reason her body doesn't seem to let her sleep more than 3-6 hour stretches, which she gets usually in 2-3 stretches in a 24 hour period. I hate waking her everyday to go to therapies. I think we will ultimately be doing just tuesdays and thursdays. Lily now says "mine" and seems to understand the consept. Lily has been talking up a storm and is putting 2 and sometimes 3 words together on her own. She still struggles with the apraxia but is able tell you things she wants and can be understood by mommy and daddy best, but her clarity is getting better everyday. Lily is routinely telling me "no' and protesting lots of things as two year olds often do. She is tantruming more for stupid things likes diaper changes, getting dressed and she HATES to take a bath and cries quite a bit in protest.

Lily is doing great in the pool and that seems to be a good, fun way for her to strengthen her core. We spend time in the pool most everyday. Lily's imaginative play has also increased and it is so fun to watch her. Her therapists continue to be very impressed with her progress.

I'll update more soon and put some pix up within the next few days.