Waiting for news...

It's been 6 weeks since we went to Seattle.  6 weeks is how long the doctor said it would take for genetics to come back.  Once genetics are back, then we start all the specialist visits but most importantly bone marrow biopsies.  I can't wait for those to be scheduled and get the results back as well as the HLA typing on a bone marrow donor for all three kids.  The waiting kills me.  I feel like my whole life is in a stall wondering what will happen over the next few weeks.  I know what you're thinking,  "Why does it matter, get on with life."  It's hard to explain so I won't.  It just doesn't work that way. 

Oh, Spencer did see the surgeon this week for his follow up and he is doing well.  The biopsies came back normal!!!Yay!!  The pathology on the gallbladder showed that it was diseased so the test was accurate and taking it out was the right thing to do! Yay!! Spencer is doing much better although really tired still and has to take anti nausea meds still but he has gained one pound which I am very pleased about. 

For this post, I thought I might explain the pictures on the header of my blog.  Mostly, they are of the kids and our many hospital visits through the years.  All of them but the top left picture were taken in Boise at St. Lukes Hospital.  My favorite hospital of all time, rated number 1 according to me.  The best food, the best nurses, the best doctors the best atmosphere and most comfortable sleeping arrangements for moms!

The first picture on the bottom left is of the boys waiting for their turn to get IV's started.  Sam, even when he was little was always happy and cheerful and watched intently as they poked him for blood draws or IV's. The nurses were always surprised.  Spencer was usually a tough poke so it was a little more traumatic for him.  The second picture on the bottom is Shelbie getting her bone marrow biopsy from an oncology nurse practitioner.  I never did know why she did all the biopsies instead of our doctor but we loved her and she was really good with the kids.  I liked the fact that the group in Boise knocks the kids out and let us stay to watch and be with them.  I don't like watching them be taken into the OR suite like we have to do now.  The third picture is of our favorite doc, Dr. Nichols.  He was actually head of pediatric cardiology and oversaw the PICU where the kids had their bone marrow biopsies done.  He was the kind of guy with a really dry bedside manner, a little cranky and crotchety.  Our first visit, we were all scared of him until we realized it was all a front.  We discovered he loved Krispy Kreme donuts and Cheetos.    The next time we went, he was there supervising and we brought him a dozen donuts and a huge bag of Cheetos...that's the way to a doctors heart!  He became so tender and loving with the kids each time we were there.  I always take lots of fun things to keep the kids occupied while waiting for surgery and one visit I took dollar store crowns and wands and all sorts of goofy stuff and Dr. Nichols had no problem walking around all day dressed like a fairy.  We found out he was into practical jokes.  One visit, he place a remote controlled farting machine just under the kids blankets and when they started waking up from sedation, he would make all these farting machines go off.  The kids freaked out because they each thought it was them being rude!  It was pretty funny.  He made each bone marrow biopsy emotionally manageable.  We also saw him when Shelbie spent an extended amount of time in the hospital and Spencer too.  He is now retired and we do biopsies here so our paths will not cross again.

The top picture on the left was last year at Madison.  I was glad they could keep the kids together in one room.  It made taking care of them a lot easier for me and the nurses.  It was a good experience and hopefully the upcoming one will go as smoothly.


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