Okay, so today seems like it's shaping up to be a better day. Miss Boots went down extremely hard last night because she was over-tired. I finally cut her off at 1:30, and basically let her throw a fit for another half hour until she wore herself out and fell asleep. She would frustrate me to the point where I almost had to leave the room, then hug me and say, "Momma, I'm sorry for all the silly things I do. We'll get through this together. Family forever!" Sigh. What am I going to do with this child?
This morning she woke up around 10 am, not too bad, and she was in a phenomenal mood, even took her liquid meds by mouth without gel caps, and without even being asked! Maybe it had something to do with the conversation I was having with the nurse about how good she used to be about taking her meds without a problem. Whatever the reason, she took them without a fight, and I am grateful.
She is playing and talking and laughing as if the drama of last night is all but forgotten, and I set about clearing the notifications on my phone: 1 missed call, Subfinder. 1 voicemail, Subfinder. 2 text messages, replied. Then I tackled the forty-plus emails that came in overnight, or at least since 2 am when I checked it last. A few were important, some not so much, and among them was an advertisement for Disney Interactive, for the Tangled iPad/iPhone interactive storybook app. Child Life has this on their iPads, and I wondered if they had it as a nook app. So I went to check, and a search for "Tangled" brought up one book that she already has in hard copy and a lot of other books that were questionable at best. There is a LOT of erotica out there, apparently.
So I typed in "Disney" to see what that would bring up, and I came across the best app EVER. At least, for a Small World fan like Miss Boots. It's an actual It's a Small World app that is basically a digital animated storybook that illustrates the entire song, and even plays the song at the end. This entertained her for at least an hour, which anyone who knows Miss Bossy Boots knows that it is nearly impossible to engage her attention for more than five minutes unless you're actively reading to her, in which case, she will stay there all day. Literally, ALL DAY...we've done this before.
An app that illustrates, animates and plays my baby girl's favorite song/ride in the entire universe, and all for only $2.99? DONE. I bought it, and a few others learning apps, but you should have seen her face. Her entire face lit up when it loaded onto the screen, and she threw herself into my arms, exclaiming "Thank you, Momma! This is the best present ever! Thank you for buying it for me!" She then proceeded to watch, and then thanked me several more times. After about an hour she lost some interest, but still wanted it running in the background so that she could hear the song.
For less than $3, I have given my daughter hope, I have given her something to hold on to.I have also given her even more fuel to get that song stuck in my and all of the nursing staff's heads, but it was worth it. She is happy today. She has something to hold on to, something to look forward to.
Today, she met a new doggie, is being read to by an unsuspecting volunteer who has no idea that she is about to stay WAY longer than she expected, Child Life is choosing an awesome prize as we speak to reward her for taking her meds without a fight, and a dear family friend is coming to visit. Today is a good day. The Campath is running, Busulfan later. There are ridiculous amounts of premeds and fluids running through her and I am going through diapers like crazy, but my baby girl is happy to be alive today.
Today is a good day.