April 26

Madelyn went without food from 3:30am on Monday morning until 10am.  Her spinal tap was scheduled for 11:00am, but when her numbers came in at 10am it was canceled.  Madelyn's ANC had to be above 750 to start the second phase of Delayed Intensification and she wasn't there.  I immediately brought out the snacks and MJ started eating as she sat on the bed in the doctor's office.  


Hem 36.4    Plat 254    WBC 2.6    ANC 564


So she has a week break and we begin again on Monday May 2nd.  I am actually glad for it.  I was relieved when we left the hospital.  It is disappointing to be adding an additional week to our time in Seattle and away from home.  But I don't care.  Madelyn needs it.  She has been feeling 100 percent better since last Friday.  She needs a week of feeling good before she starts this next hard part.  She is feeling good and is happy.  I need this too.


Her mucusitis is gone.  Her backed up stool is cleared thanks to the Miralax (obvious after, poor thing, had three accidents in her pants today).  The only drugs to go into her system today were her weekly Bactrim antibiotics.  (From the day of diagnosis and for the next 2 1/2 years, she will take a antibiotic on Mondays and Tuesdays to prevent a life threatening type of lung infection that immune-suppressed patients are susceptible to).  No pain meds, no anti-nausea meds, no anti-histamines - nothing!!! 


We spent Monday afternoon at my sister Jen's house.  We all needed that day/night of laughter and fun.  We had pizza and the kids were busy playing, building, laughing and not sharing.  Then they came over to our place today and Wyatt stayed with us while my sister went home to do a few things.  It was so great for Sophia.  Wyatt is about 9 months older than her and they just had a blast.  She climbed into bed herself tonight and was totally PASSED out at 7:30pm.


So some pictures from the last few very happy and busy days around here:

Don't even think of taking my watermellon.

Watermellon.  Great way to get fluids in and make two little girls verrrrry happy.

Preparing for the EB.  Madelyn drew some pictures for Mr. Easter Bunny and placed it by her basket with a note: "You can take it (the picture) Easter Bunny."

Her pictures for the EB.   I love the bunnies and carrots.

MAJOR crafting going on around here...

I am super fast shopping cart girl.  With no pants.

Little example of MJs difficulty getting up off the floor; needs the bed for support.

Captian Crazy Pants.  She is non-stop these days.

Example of MJs complex drawings.  Each box is a different mini-picture with significant places or people.  Pictures include our house, plane to Switzerland, Mommy and Madelyn together, Alaina and Avi, Daddy and Sister, a big M for Madelyn, swimming pool in Mexico, etc, etc.  I love this picture.

On the beautiful day Saturday, the girls and I went to Magnuson Park and picked dandelions.  We watched the ducks and listened to a band practicing.

 

Magnuson Park, huge park right next to our apartment.

Play, play, play... so nice to see them playing together again...

 There's my girl again...

Easter morning.  Nothing better than eating chocolate in your night gown. 

This is the life.  Chocolate on a stick at 7:30am.

We had an Easter lunch with my parents, my Grandpa (MJ and Phia's Great Grandpa) and Peter's Dad.  Here the girls are heading out for "Mommy and Daddy's Easter Egg Hunt."  Grandpa Jim, Grandpa Urs and Daddy hid all the eggs for the girls to find... they loooooved it.

My dynamos.