Have you all been as busy as we have? A friend said "A holiday is a holiday, not a vacation." Which is definitely true. Although we had a blast this Christmas and New Year.
Most notably (or maybe notoriously), we hosted the Bell-bonic plague (norovirus) and wiped out our entire Miller extended family, and both my and Dan's immediate family in the span of a week. We are fairly certain that Selene was bell zero. However, armed with her anti-viral she puked once (in a bowl, yay!), took a two hour nap and that was it. Compared to the adults who were basically on death's doorstep for a day and then spent days trying to regain the desire to eat. Despite all of that our family still loves us and the girls remember nothing other than a joyful Christmas.
We spent a long day at CHOP today. Selene was adorable and cooperative as always. She giggled and danced for Ellen. She is doing great so we are going to decrease her steroids by 1ml, then hopefully another 1ml next month. They also said that after we're off steroids we could possibly take her off of the Imatnib too. I guess that could still be 6 months away, but that will be a huge relief!
Still no answers on her hair. I shared my concerns and fear that it's an indicator of something else we're missing. But they are fairly confident that it's just a crazy curve ball that Selene's body is throwing us. My vanity is crying a few tears over this. She wants to be beautiful and have beautiful hair and it hurts my heart that it is all breaking off. We did get her a hair cut to clean up the "wings" and she's freaking adorable!
We missed two weeks of PT over Christmas and she lost no progress or flexibility. So we've decided to go down to once a week! So we will keep our back to back PT and OT on Monday. It isn't ideal for her, she's always exhausted at the end. But there's a good chance it'll just be one more month so we're going to stick with it.
We also decided it was time to add ballet into their lives. I took Ainsley last night, we're going to try a few classes to find the right one for her. They are both super excited.
It seems every day we're getting closer to normal :-)
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| Our little elf |
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| Christmas Eve service |
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| Christmas Eve |
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| Excited for her Truly Me! |
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| Cocoa on the porch at Nana's |
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| A little dip at the Marriott, we're doomed with this one! |
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| I can't choose just one of these, I love CHOP for doing all they can to make visits fun. |
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| All giggles |
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| Enertaining |
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| "Let's do math, Mom" |
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| Coloring during our hour wait for respiratory :( |
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| Champ while taking her antiviral |
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| For some reason she loves these steps |
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| Despite a good day with Daddy, she missed her Momma |
