No News is Good News… I think!

 I know it’s been a while since I posted an update, but I don’t have much that’s changed.  We have had 2 outpatient clinic visits.  They were (as far as I can tell) fairly routine.  They tested his blood levels when we arrived.  On June 18, he needed red blood and platelet transfusions, which took almost 4 hours on top of the doctors and things.  It can sometimes be tricky to keep a kid entertained for that long when your in a small exam room.  We were there almost 8 hours that day! 

The following week, June 25, it was another routine, long, appointment.  His blood levels were slightly higher than the week before, and it was the first week since his diagnosis that he didn’t need any blood transfusions.  The cutoff numbers for platelets are 10k and his were 14.  For the red blood,  if (I can’t remember which is which)-hematocrit or hemoglobin is below 7% they do a transfusion, and his was 7.2%.  So they are still considered critically low for a healthy person, but they have different criteria for kids with bone marrow failure.  

At the appointment last Friday, we met with the Bone Marrow Transplant specialist.  He spent over and hour with us explaining all the ins and outs and procedures relating the actual transplant. It was very informative, and another “information overload” type day.  But I came away feeling much better overall.  Knowledge is power, in my opinion, so I felt much better armed with a lot more facts.  

Playing play doh at the doctor’s appointment 

We are still agonizingly awaiting the results to find out if any of the other kids is a bone marrow donor match for Andrew.  We have another outpatient clinic appointment tomorrow, and perhaps they will tell us then.  Being in this holding pattern has been a test of my patience. 

I realize that the doctors need results and data and facts to make sure that when we move forward with a treatment plan that it’s the best plan.  But I am feeling a bit helpless and just want to be doing something.  I am tired of playing the waiting game.  

One profile picture and one 3-D ultrasound picture!

On another note, I had some ultrasounds, and baby girl is looking great, and growing well.  She’s measuring a week or two ahead of her due date.  I hope that doesn’t mean she’ll be a giant baby to deliver!  Troy is planning on taking the 5 big kids on our annual camping/family reunion dirt bike trip, and they are really looking forward to it.  Andrew and I will be sad to miss it.  We make some great memories there.  Andrew’s doctors just weren’t comfortable having him 4+hours from the hospital, should something unfortunate happen.