Day -7

Yesterday was a great day for us.  Alan has taken the past two nights' duty at the hospital which made the day time yesterday much more fresh and easier to handle.  Right now, Clara is doing GREAT.  She is not having any nausea or fatigue.  She even breast fed a little bit more than usual during the day.  I was so proud of her. 

She is showing signs of recognizing certain words and hand signs that I have been consistently using: eat, sit up, stand up, dance, night night.  It is great to feel like we are actually communicating a bit.  Hopefully, she will start using signs back at me - whether they are ones she makes up and I recognize or her copying the signs I've been using doesn't matter to me. 

She has to do "oral care" 4 times a day.  It is basically tooth brushing when you don't have teeth.  We soak a pink sponge on a lollypop stick into salt water and wipe her gums with it.  The sponge is mint flavored, which I assumed she wasn't going to like as that is kind of a strong flavor for a baby.  Turns out, she LOVES the thing!  In fact, it is the only thing I have seen her open her mouth in anticipation of putting it in her mouth.  She hasn't done that yet with solids so I am soooo impressed with her.  It sure does make it easy to do the 4x daily mouth swabbing.  I hope that once she has the mouth sores, she will still like having it in her mouth.  Occupational Therapy says that, at her age, she is missing the oral stimulation that is associated with different textures of solid foods.  So, she loves this sponge thingy.  We are going to use it to continue moving forward with solids as long as she is up for it. (We anticipate the nausea to start this weekend.)

The only other big news is that the Busulfan levels (the chemo she is getting right now) we a little low so we have bumped up the dose she is getting.  We will not be drawing new levels to send of to Seattle however.  They are just assuming this dose will be effective.

Looking forward to another day with my daughter.  I need to switch the laundry over and head into the hospital.  I can't wait to see her face when I arrive.  She got very excited and actually gave me hugs and snuggles for a few minutes after my arrival yesterday!