Enjoying the high

Charlotte has been doing fantastic, we have had almost a month at home with no trips to emergency.  We have had some absolutely gorgeous days we have been able to enjoy by getting out for lots of walks/runs and getting the back yard ready for summer!

There have been two fantastic things that have happened over the past 2 weeks:

1. Watching Charlotte's development pick back up - particularly her speech has grown exponentially!  She is catching up for the past few months, so lately we have had the joy of hearing her 5 word sentences, telling stories, and singing songs! 
2. Charlotte has taken interest in her baby brother!  She was somewhat indifferent to Nathan for the longest time - it wasn't that she didn't like him - she just couldn't really be bothered by him.  But the past couple weeks she is into 'playing' with him.  (playing consists of handing him a toy and saying "here Nathan")  And tonight she even helped bathe him!  Big milestone!

We are now down to a very manageable amount of tv time.  During our peak of steroids, we would put a timer on for dinner time - she had to stay at the table with us for 10 minutes, then she could go back to the couch with her meal.  She'll still ask for the timer, but usually after she's already been sitting with us for 10 or so minutes, and once it's gone off, we will continue to chat, and sometimes she'll ask for it on again.  So - meal times are now the usual 30-40 minutes of family chit-chat!

I think having such lows, make the highs all the more lightening - I really feel buzzed right now on all the good.  It brings back memories of those periods of respite during Stefan's treatment.  I think back to the crazy emotions during the first week of his diagnoses and surgery.  After one week in the hospital - we got to go home... it was Christmas Eve.  That was the best Christmas ever!  This year we had the best Easter ever!  We do our best to shut off the worry and 'what if's' and just focus on the present goodness.  This is what we did that Christmas, and it's what we have done now.  It will recharge us for the next dip.

Charlotte had bloodwork today and was supposed to be starting her next phase of chemo on Monday.  But, her neutrophil count is not high enough (those are the cells that fight infection).  They are supposed to be at 0.75 to start the next phase, but hers are at 0.3.  So, we are now on hold, she will go for bloodwork again on Thursday, and should be starting Friday. 

In the meantime, we will enjoy the extra week of her feeling well and get in lots of playtime, stories and cuddles! 

A quick Stefan update
As you can guess, Stefan rehabilitation program is on hold for now.  Since stress and anxiety are his two biggest issues, you can imagine that Charlotte's diagnoses hasn't been good for him.  He was a bit on edge after the week in hospital as he hadn't had enough sleep, but he's managing pretty well right now since we are home and rested.  He will touch base with his occupational therapist again in June.