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On Monday Allistaire was supposed to have her TPN reduced to 16 hours.  When the team rounded, Kathy, the dietician, joyously suggested we just be done.  Because her ANC was 222, this meant she was also able to go off of her antibiotics.  Suddenly there was no longer the need to have her hooked up to her IV.  The only thing standing in our way from leaving was the need for Allistaire to show that she could consume the needed volume of her daily fluids.  Forty ounces was the goal and we were graciously allowed to count 50% of the baby foods volume toward fluids since it is so runny.  We only had to get 80% of the 40 ounce goal in to make it out the next day.  So the closer goal was actually 32 ounces.  By the time I laid Allistaire down for her nap she had already consumed 34 ounces.  Elation!  She was also eating incredibly well, downing jars of baby food and even feeding herself again.  When I stretched out my hand to give Allistaire a chunk of cheese, she responded with, “Okay mommy.  Running fast, eat a cheese.”  She used her little teeth and chewed like it was the most natural use for teeth.

On Tuesday afternoon, as we were attempting to make our exit from the Unit, we were thwarted over and over from our departure by so many beloved faces.  It was joy and sorrow mixed together.  The pervading statement was, “I hope to never see you again.”  Where else in life could such a statement be one that declares love?  But here, every hello is cautious and every farewell tempered.  When a face you love shows up after being gone a while, you rejoice and you simultaneously fear what it could mean.  A sigh of relief meets the statement that it is a scheduled return.  We say good bye hoping it is forever but never knowing, even as we look into the faces of those for whom it was not the end.  I just wanted to get out and be on our way and at the same time, there is sense of betrayal that you should be allowed to simply walk out of those double doors, and they must stay, facing long hard roads with unknown ends.

But leave we did and what pleasure it was to see sweet Allistaire walking in her dress, all lit up by the bright afternoon sun, as she marveled over and over at flowers and birds and just the fact that she was walking.  Joy to put Allistaire in her car seat and simply drive away.  Two weeks from that day and we could be done.  Thursday we had labs and a clinic visit.  While Allistaire is doing great, unfortunately her ANC was only 178 and so we had to cancel the Bone Marrow test scheduled for that day.  It is now rescheduled for next Thursday, May 10th at 10am.  Results should be available in plenty of time to review before her scheduled “line pull” on Tuesday, May 15th.  Our only other appointment is this Monday the 7th just to check labs and have one more exam.  Once her line is out, she will need monthly blood tests from the date of the line pull.  Every three months they want to see her here at Children’s.  I so just wanted that test done and good results back, but now we wait another week.  I am just thankful that this delay should not impact the timing for the line pull.

We are home now and trying to figure out how to live this new life; this life still in limbo.  We received an offer on our house on Wednesday which we accepted.  Tons of paperwork has been filled out and signed.  Now we wait for inspection and the much hoped for approval of our short sale which could take months.  Today I rushed around the house like a mad woman trying to pick things up and vacuum due to a phone call informing me an agent was coming by in 45 minutes to show the house.  Please pray that the short sale would be approved in record time and that God would help me to be a good steward of our home without being a stress case.  It is hard to know how to spend our time since we are still trapped at home with Allistaire having such low white blood cells.  What has been the best is to simply watch Allistaire do the things she does.  She has little plans she carries out – taking all of the blocks out of the box and sitting them on the table, then returning them one by one.  She walks up the stairs now, one hand on the wall as she ascends, instead of crawling up.  She tells me all sorts of things with her sweet voice and expressive eyes.  She has taken to the word, “later.”  Anything she is not excited about, she suggests we do later.  There is a great deal to rejoice in despite the ever present feeling that life just feels strange.  I still feel unsettled with having so very much outside of my control, but I seek to soak in what the moment and day hold.  It is a constant effort to fix my thoughts on what I do have instead of what is different from the way I want it, because I know at the gut level that I have it good.

5 responses »

  1. Joy! What a sweet little girl! I love it that she checks to make sure her headband is still on:). I need tips! My girl’s won’t keep anything in their hair!! I’ll be praying for the test…that you can have it done this week and for the house. We received an offer the beginning of November and closed last week and I kept being told how “quick” that was for a short-sale. That’s why we ended up moving and just leaving the house empty for awhile until it all went through. I know each one is so different though, so I’ll pray yours goes well. The program we got the $3,000 through was the Hafa program and it was literally one sheet of paper. I’ve been told this is rare to get,m but we had a medical reason and I think that’s why we were approved which might work for you too. Just some thoughts, but I’m praying it all goes well for you! So glad you’re enjoying having your sweet one home.

  2. So happy you are back home and hopefully this is all behind you now. Good luck with the sale of your house. Hope it goes well for you and you and Allistaire can be back with your family again. Will keep praying that all goes well.

  3. God is Good! We continue to pray daily for good news, understanding and having an ability to enjoy the good news! Every day is a good one and God has a lot of “better” ones in store for all of you! Good luck with the sale … this should be a piece of cake for you after the last 6 months!!!

    Love you all Roger & Tera

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