I've been wishing for the time and energy to do more updating. Lily has not been doing well on her new medication lately. Lily's body make-up has always been different than the typical (big surprise). With her, it generally takes very little to effect her, but on the flip side she gets use to things quickly as well. We started her off on 25mg of trazadone and though it did not help her sleep for long, she woke up saying "Happy, Happy!!" and was in a great mood just a few hours after taking it. Since it is an antidepressant, antianxiety medication, it really did it's job. The problem was, every 5-6 days I would have to increase her dose for her to stay level, otherwise her body seemed to go into a depression, as if she is going through withdrawls. Increasing her dose has been fine. She's been doing well and sleeping most nights (she has been averaging 6-8 hours). Unfortunately, she is at the most medication that she is allowed and since I can't increase it she has been completely miserable. She's been crying ALL the time and telling me that she is sad and she's not eating or sleeping well at this point. I have no choice but to wean her off of the medication, so we started to do that a couple of days ago and it has been even more of a nightmare. Now with the lower dose she's not sleeping and is feeling so awful. She comes to me for comfort that I can't provide. I can't change how she's feeling on the inside and it makes me feel horrible. She's been especially clingy lately and gets upset if I go or am gone for too long.

On a more positive side, Lily has been able to say more words (though just recently with the depression it has decreased). Last week we went swimming and she told my sister "Sonia pool too" because she wanted my sister in with her, but my sister didn't have her suit on so she couldn't comply...so Lily said a very forceful "IN". She has been using more words together. Instead of just saying 'again" for things, she'll usually say what it is as well, like "Word World Again", so I can play her show over when it is done. I also heard her say 'I kick it" as she was kicking the door. She has been "showing" me things on her own lately, which is new skill for her. Typically children start to do that by 12 months. We're trying to improve her joint attention, which has been difficult. I was hoping once we got her sleeping that we could start some new therapies to help with that, but it seems I'll just have to wait yet again, at least till she's back to her regular self. I spoke with the neurologist office about giving her some medication that is strictly for sleeping, so if I can get that and it works, that would be great...so that's my new prayer.

7-12-09

Lily loves to hang out by the pool!

Here is Lily trying to sing the song "Poker Face", one of her new favorites:


Lily has been FINALLY getting some rest. As a result she is flourishing even more. We're still not on the best schedule, she goes to bed usually between 12-2am in order to ensure she will sleep through the night, but we're finally making some progress! Her new medication for sleeping has been allowing her to actually get some DEEP sleep, which is very new to her. It scares me a little because she really is out for the count and her breathing seems really shallow but she wakes up feeling refreshed and happy...what a concept! She is really talking a lot more and we are really excited about all her progress.