Well, we are in the midst of letting the drug "wash out" of Sara's system. While the rash is better each day, we can tell she is coming off the drug. Last night she wouldn't eat dinner and dinner ended when a bowl of applesauce went flying off the table and dumping onto my carpet (yet another reason we will be getting hardwoods installed before the end of the year). Bedtime was fine, except that she didn't fall right to sleep when she went to bed and called for daddy once (something that hasn't happened in the two weeks on the drug). Last night she woke up in the middle of the night for the first time in two weeks. She came to bed with us, but was awake for about two hours (or so it seemed in my half awake brain) and was very emotional and defiant. She slept "late" this morning and seemed to be in a good mood, but we will see how today goes at daycare.
I spoke to the nurse that oversees our case at the phsycartrists office yesterday. They can't get me in until the 18th to discuss a new drug therapy, so we are just going to have to wing it until then. I think daddy and I are going to have earlier bed times so we don't get behind on sleep again. She did give me a list of drugs that could be possibilities for our next try. I researched all of them, and while each carry their own risks and side effects, none of them have the sun sensitivity like this last one. That is good news for a family that will be spending a lot of time at the beach this summer!
Tonight Nigel has a work thing, so sissy and I are on our own. I need to grocery shop, so we may do that. The other part of me wants to blow off the grocery shopping and snuggle on the couch with my sissy... we will see what wins out!
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