The last picture.

Let me start by saying that I have no idea where I'm going with this blog.  It could last one day or a week.  (Hopefully not that long because my little guy has to get better soon.  He just has too.)  I don't even know if it's just an outlet for me or if it's to update everyone else.  I don't know.  All I know is that my head hasn't stopped spinning and I'm not a talker.  I don't like to talk when sad or upset.  Maybe this will help.
I have been told by a few people to start a caring bridge page and I tried but I couldn't.  I couldn't decide if it was just for people with really sick family members or for every illness.  Either way...I'm not ready for that yet.
I can promise you though that pretty much every post will have spelling errors and punctuation typos because if I stop to really think and reread...I'll freeze and delete and just keep everything inside.

Of course with a photographer mommy this blogs first post would have something to do with pictures...!

This picture was the last taken before everything changed in our house.  

Maverick hates bottles and pacifiers.  So in my desperate attempt to get him to attach to something besides me I found this cape blanket on Etsy.  He loved it!  He grabs it, rubs it all over his face and throws it off smiling when he plays and when he is sleepy, he nurses it.  After watching him do this over and over his sisters and decided he looked like a super hero.  So "Mavy Man!" was born.  We put his cape on and all yell, "Mavvy Mannnn to the RESCUE!" and of course he smiles that big beautiful smile and we all laugh.  In the last 23 days (that have felt like years) he truly has become my super hero.  Every time the doctor gives me more crappy news and I burst into tears I hold him so tight and kiss him over and over and it never fails...he looks up at me and smiles and everything seems more manageable.  His smile is my hope and strength to get through each day.

This picture was taken on March 9th.  On March 10th I noticed a few little red dots on Mav's legs while changing his diaper.  I thought it's prob nothing and went on with our day.  The next morning there were like 40 of these little freckle looking dots.  They were on his legs, arms, chest...even in his ear!  I showed Martin and he said it looks like a reaction to clothes soap or something.  Mav seems happy, don't worry about it.  and he did.  Mav was his perfectly normal happy self but something was telling no. no no nooo.  This is not right.  An hour later I called the urgent care.  They made us an appt for that afternoon.  When we got there the doctor tried to tell me the same thing...it's eczema.  I said no...I really don't think it is.  I have 4 kids.  I know what that looks like.  This isn't it.  So he said well lets do a blood test but I don't think we will find anything.  It's rare.  Ok great.  Lets do that I say.  Down to the lab we go.  They did a foot prick.  Talk about horrible.  I was crying.  Mav is crying.  I had no idea that would be the easiest blood draw we would do...
10 mins.  We should have the results in 10 mins they said.  An hour later I'm still waiting and freaking out.  FINALLY the doctor walks back in and says...remember that rare case I mentioned?  He goes on the tell us that they did a CBC and that Maverick's platelet levels were very dangerously low.  The normal is 150,000-450,000.  His was a mere 3,000. Platelets are what makes your blood clot.  He said that the reason it was taking so long was because they were admitting him to Fairfax hospital and wanted us to drive right there and they were getting his room ready.
We got to the hospital and in the room around 9pm.  I think I met 20 people in the next hour and couldn't tell you one of their names.  It was a big ol blur.  We put the tiny gown on our baby boy and tucked him into his hospital crib and Martin and I laid down together in a chair that folded out to try and sleep.  That was a joke.
A nurse came in at 1:30am and said I'm taking him to the IV room, do you want to come.  Of course I did.  I wasn't leaving my baby.  I honestly don't remember much from there on out.  I remember crying and crying as I sat there listening to him scream in a dark room because they had to use a special light to find his tiny veins. He had his Mavy Man blanket though and it between cries I could hear him trying to pacify. I wanted to jump up, grab him and just run. Run anyway but there.  Next thing I know we are heading back to the room and his entire arm was taped up and covered and he had his sweet little face buried in my hair.  All I could hear was the quick breathing babies do when they can't catch any air from crying.
The next 5 days were a roller coaster of emotion.  Different doctors saying different things...the what it could be and the what it isn't but never what it IS. The hardest thing I've learned during this all is that medicine is very much a process of elimination. The unknown can drive a person crazy... Blood draw after blood draw.
We kept hearing about something called ITP or Idiopathic thrombocytopenic purpura and that if he's sick that is what we want! It's fixable and normally goes away but takes some time. There is no cure but a treatment until the body/immune system resets itself. Something called IVIG.
Fast forward two treatments later and his platelets have never gotten above 37,000 and now his white cell count keeps dropping below normal as well and that doesn't normally happen with ITP.
We had a visit at his specialist this morning and he didn't cry even a little with his foot prick. It's like it's normal to him now. That breaks my heart.

Today's results:
Platelets were 14,000
Neutrophil (part of the white cells that fight infection) count is 7% normal is 45%-70%
These numbers have earned us an early am ticket to a bone marrow test. They have to put him to sleep. I can't even put into words how much that scares me...