What's new and unexplainable?

Well the good news first Gracie is growing and changing just like any other toddler!  She walks and runs!  It's so fun to watch her run we went on a walk the other day...she walked or ran most the way and as we headed down the street Todd decided he wanted to change into some shorts b/c it was too hot outside so he ran home and as soon as he started she turned out and started yelling  "daaaaa, daaaa" as she ran back towards the house.  She stopped for a minute to watch the kids play basketball in the street then looked back at the house kept running and yelling "daaaaa" it was so cute!  The poor guy can't get a break.  He goes to work (at a place he doesn't love) then comes home later in the evening to find a little girl that can't be separated from him...yes and he even has to sleep with her most of the night except of course for the long hours in which they are awake together during the night (to be explained later on). 

This week she has learned to feed herself with a spoon and fork.  She's had peach cups, cottage cheese, yogurt, pudding (the pictures above are all of her enjoying feeding herself pudding for the first time), and finally ate some oatmeal this morning which used to be her breakfast of choice until a month or two ago when she decided not to touch it.  She's starting to eat more normally and trying and liking the foods she wouldn't touch since she got sick...we're grateful even though we're sure it's only temporary since she'll be back on steroids and lots of new chemos coming her way. 
If I thought toddlers had a lot of energy before I have learned a new perspective on things!  I mean this girl can go...and go...and go!  Seriously I mean she makes me wonder why I need so much sleep!  She was sleeping about 7 hours a night for 4 nights straight with typically only 1 1/2 -2 hours of nap often broken up throught the day.  And when I say 7 hours a night I don't mean from 11-6...I mean broken scattered naps at night.  Here's an email I wrote to our Dr about the quandary we were in..which reminds me have I mentioned that I LOVE our Dr?  Yes she lets me email her anytime and she has always responded the same day and sometimes multiple times in one day!  She's amazing...thank goodness we have such a good Dr to help us through all this. 

"I have another unexplainable that I'm hoping you can explain...we went from tired Wednesday to wired from Thursday to now.  She doesn't seem to need or want to sleep ever and when we put her down or take her into her room to sleep she screams and I mean screams.  She is currently sweating from every surface on her body because we tried to put her to bed for the night.  We try letting her "cry" it out and she just gets more and more worked up it's almost like steroids, but will still never go to sleep and even if we go in after she's cried or try to rock her to sleep before she starts crying she starts SCREAMING as soon as the lights go down in her room and flails her body around until we take her out.  She won't lay down on the bed with Todd like she used to and she is typically going to bed for the night around midnight or 1 am instead of 9.  Thursday night she went to sleep probably around 11 pm or later and woke up at 1:30 and wouldn't go back to sleep until 5:30 am then woke up around 8:30 for the day.  She slept for a couple hours during the day then stayed up until 12:30 slept til 4:00 am woke up SCREAMING and we finally calmed her down and fell asleep with Todd an hour later for a couple hours.  Then she only slept for about 1 1/2 hours total naps that day and it was in Todd's arms broken up.  Last night she went to bed around 1:00 am after we gave her a dose of ativan around 10:00 pm because of how little she had slept the nights before and she woke up 20 minutes later totally inconsolable.  We took her out of her room even and she just kept screaming and throwing her back all over the place for about 15-20 min we finally got her to take a drink and got her blanket again and she fell asleep and slept with us for a few hours before waking up and doing the same thing.  She finally took a good nap from 1-4 in her crib today and thought maybe that would help but now it's bedtime and we tried putting her to bed and of course the same story screaming til she's practically soaked from sweat and kicking nonstop.  most the time she will calm down if we let her get up and play or watch a movie, but still doesn't fall asleep for hours no matter how long we let her cry or how long we stay in herroom and try to get her to sleep.  Is there any thing that would be causing this?  We called in last night and they didn't have an answer.  So maybe we just lucked out and she's really trying to get us ready for a new baby :)  Just wondered if you had an explanation or a med that might cause it but the only new thing she's had is the methotrexate and she was tired tuesday/wednesday so doesn't seem likely."

The night I sent this email turned out similar and thankfully last night was quite a bit better.  She went to bed I think around 10:30 for an hour or so woke up so we gave her a good dose of benadryl which hasn't helped in the past and she fell asleep in the other room with Todd for about 7-8 hours only waking once for a pacifier.  I woke up at 6 and couldn't believe that i had just slep for 6 hours straight!  By the time I crawled out of bed about 8 I couldn't believe a person could feel so good!  I was so refreshed from finally getting a good stretch of sleep!  I sent Todd to our bed for a few hours before he had to go in to work (since he had spent the entire night on the floor poor guy...due to our air mattress giving out for good this time and the one I ordered didn't get here til today even with the 2 day shipping b/c of the long weekend).  He woke up after about 2 hours and said something like "wow, you're like the mother of the year today, look at all you've done this morning".  Yes...amazing what you can accomplish when you actually get a bit of sleep at night. Here's hoping for another night of decent sleep!  Oh and thankfully no clinic again this Tuesday...we go Friday this week since it's every 10 days now!!