Down another mL

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 :-)

Our little elf

Christmas Eve service

Christmas Eve 

Excited for her Truly Me!

Cocoa on the porch at Nana's

A little dip at the Marriott, we're doomed with this one!

I can't choose just one of these, I love CHOP for doing all they can to make visits fun.

All giggles

Enertaining

"Let's do math, Mom"

Coloring during our hour wait for respiratory :(

Champ while taking her antiviral

For some reason she loves these steps

Despite a good day with Daddy, she missed her Momma

Back from Hibernation!

Wow have I been neglecting the blog! We've been settling into the new house. I've stripped wallpaper and painted 7 rooms and I think we can finally pack the paint supplies away for awhile.

Life has been good, busy and crazy, but good. The girls both love school and Kalina is growing into quite the vivacious little toddler.

Selene is a completely different kid. She used to cling to my leg, refuse to talk to new people, wouldn't engage in play. And now I can't stop her. We went to a local play place and she climbed for an hour with a sweet little girl she met. Ironically, that was a goal for physical therapy. Being able to engage in a family activity out of the house for an hour!

We had another goal check where she met or exceeded every expectation. We are so thrilled with all of her improvement.  At this point we are expecting to be down to one physical therapy appointment by early Jan and then done completely by the beginning of February. I'm not sure how long occupational therapy will continue, she still has some work to do on her hands.

We are still struggling with her splints. The best scenario would be her wearing them all night long! But that's not gonna happen any time soon. So we'll just keep bribing her with tv shows and using them on car rides for now!

She goes to clinic and has a dexascan on Dec 13th. I'm really hoping that ends in reducing steroids, and answers for her bones. They continue to be a concern, her vitamin d levels won't get up to snuff. But we'll take that one day and 7 drops a day at a time.

Totally off topic, but we were talking about Selene's time in the hospital. She references it as "the place where I played with the ice cream toy." She doesn't remember! I showed her the little video I made and she watched it like 4 times in a row and now asks to see it. It was exactly the reason I made it. I don't want her to relieve anything negative, but she loves seeing her story and all the love that was given to her. I think my heart exploded watching her watch it!


Until next time (which hopefully isn't in two months ;-))

PICTURES!

For those who don't follow me on Facebook I thought I would share pictures from the last two months.  We celebrated Pumpkin farms, hayrides, Halloween, Selene's 4th birthday, a thanksgiving parade, class parties, school pictures, and sister love. We also laid our Grandfather to rest in Arlington, such a special honor. So we spent the day visiting DC with the girls.

And sadly, we said goodbye to an amazing woman, Dan's Grandmother passed away the day before her 88th birthday and only days after she was able to see Popop honored in Arlington.  She was truly the epitome of honesty, love, strength and devotion. We miss her greatly.