Beanie's Blog: Starting to feel lousy

I was all set to write a post about how Selene finally seems to be feeling the effects of treatment. Her eating is slowly tapering off, she slept until 9am but was rubbing her eyes within an hour. She is tired, quiet, not as cheerful or congenial. Then she goes and proves that she is a fighter.

Before I begin writing about how she's doing. I decided to make a sign saying that Selene is sleeping and only essential interruptions should occur (I'll be more eloquent). It baffles me how many people don't understand the reasoning behind "Never wake a sleeping baby." I'm looking at you, Nurse in training. Night nurses are stealth ninjas and rarely wake Selene, so they're ok :-)

The rounding doctors came in at 9 this morning and Selene was still sleeping. They tried to be quiet but a troop of doctors can only be so quiet and Selene woke up. They are still pleased with her health, her numbers are still dropping (as they should be), and we continue to discuss nutrition supplementation. I'm still holding out hope that she'll continue eating enough, but it is starting to seem like she might need some help.

It was also deep clean day. Every two weeks you pack up all of your stuff into bins and they come in and completely clean down the room, much more intense than the daily clean. Packing, Upacking, and Organizing might be my favorite thing. So I got all packed up and we went to the play room while Tamia cleaned our room. Selene had fun with the new toys but by the end was in my lap, exhausted. When our room was sparkling we got her settled down with some lunch and I was sure a nap would be easy breezy. Lolz! Not with my kids.

After playing around and trying to avoid eye contact with me, Patrick from Music Therapy came in. Of course she jumped at the chance to procrastinate. She actually really enjoyed the music today and participated like a good girl. So I was glad I didn't make him leave :-)

After that I stepped out so Nana could work her magic. After she was asleep for about 40 minutes, Donald, who I think is a nurse in training, came in for vitals....and woke her up. She was crying hysterically. Peace out, Donald. I asked him to come back later (he came in while she was STILL sleeping and attempted to get near her again. I made him leave.) Temperature and Blood pressure can wait when she is sleeping (if she had any signs of fever I would of course let them take her temp as often as they liked no matter what).

Daddy arrived right as she naturally (key word) woke from her nap and after a few hugs he and I went to Starbucks for some iced tea. While we were chatting I mentioned that Selene must be getting more exhausted because I noticed her eyes looking sunken. He responded, "She looks like she did before she was diagnosed and on Neupogen." I couldn't believe that didn't occur to me. Neutrophils are important little buggers. I had totally forgotten the sunken, tired, baggy eyed look she had before we knew and the color and happiness that came to her face with normal counts. I am hoping we're only low for a few more days and that we are on the other side of the bell curve by the end of the week.

But after giving Nurse Krista a run for her money last night she was in full on charm mode for bedtime tonight. She took her meds, danced, twirled and helped to clean up before bedtime.

I can see how terrible she feels and yet she continues to play and smile. Granted we get a few more snuggles, which I will gladly take, but overall she is so strong and such a resilient little girl. I am one proud Mama.