[/caption]Yesterday it was sunny and 60. Tonight it is 40 and snowy. Yesterday there was talk of going home today. But it was a no go. First Ellie was way way sleepy not waking up even when Ben was in the room (that is a rarity, I mean how else is she going to get all of her Ben yelling in for the day?) Then when we increased her steroids (rescue steroids) to see if that helped her to feel a bit perkier, she did not sleep from midnight to early evening yesterday. I suggested keeping the rescue steroids high during the day and lowering the dosage at night to allow her to sleep (and Thom for that matter). The doctors decided to decrease all the steroids all the time and suddenly Ellie was sleeping again and not waking up when we tried to arouse her. Now we are back on the rescue steroids and waiting to see what will happen. But again the question becomes if the steroids make her feel better why is her body needing extra steroids. What stressful thing is happening in there to cause her to need the extra assistance?
[caption id="attachment_2515" align="alignleft" width="300" caption="Ellie groovin to some tunes."]
[/caption]Talking with my super sister, Susan, today I realized that I was holding my breath, anticipating, waiting. Will Ellie always be like this? Will she always be drooling, slurring her words? Will Ellie have difficulty with her vision? Will we be able to keep her awake without heavy doses of steroids (or maybe latte shots)? I think there is that desire to prepare myself for whatever possibility awaits us or at least to try. Because after her last partial resection surgery (the one in April 2008, not the most recent rounds of surgery), there was so much she lost when the communication between her pituatary gland and the hypothalmus was severed. The whole summer afterwards I was a mess of disappointment, anger, frustration. Trying to come to terms with what felt like a big fat loss. Now I wonder will there be other losses to deal with now? Will I go through the same swirl of emotions this year? Will there ever be maternity underwear that is actually comfortable is that too much to ask? Ugh.
But then I thought of sweet Ellie and how even when she was getting the questions wrong the neurologist was asking her (like how many fingers am I holding up or what color is this?), she did not give a hoot. She was still her happy clappy self. It reminded me of this song I heard on the radio, "She is Love" because that is what to me Ellie really exemplifies, "love". And as my sister said to me today (have I mentioned how fortunate I am to have HER in my life?) that she knew I could handle whatever came along because I was such a superwoman. And she reminded me of what an amazing teacher Ellie has been to everyone she has come in contact with (not just the medical staff right now.) So I suppose I just have to take this moment as this moment and know that some things may stay the same and some things may not but no matter what we will find a way to not only survive but excel. What other choice is there really?
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