Saturday, August 2, 2014

PETECHIAE POP UP...

     The boys have had jam packed days since Jake's last doctor appointment.  Jake has had VBS and Jaden was at football camp.  Both had a blast and were excited to be out doing things with other kids.  Yesterday Jake slept in until 10:45.  He's been sleeping a lot longer in the mornings and I'm not sure if he's just catching up on sleep or what.  I'll admit, it's been nice.  I get that extra time with Jaden in the mornings and it's so quiet!  Once Jake got up yesterday we we home bodies and the boys just played outside most of the day.  Later in the day, they had a friend come over and they all swam.  Today my life group from church had a pool party.  It sure has been nice doing regular summer things!  The boys swam for about 4 hours at the party and ran and ran.  Towards the end of the party I went over to Jake and noticed that a small patch of petechiae had popped up. My stomach just felt nauseous immediately!  The ONLY times that he has had petechiae, his numbers came out super low!  Of course my mind just went to the worst thing...why is this still going on?  When will it end?  Why, why, why!?!  Jake had no idea and I didn't point it out to him. We have two full weeks of no doctors, no hospitals, no needles and I don't want him to hear me talk about any of it.  I went back and sat by some of the girls and I just could not help these things from being in my head.  The tears started again.  As I sat there and watched my perfect little boy swim, jump, laugh, run....was this just a false alarm or had his body seriously started attacking his platelets again?  And so soon?
      John and I talked a little about Jake and the petechiae, but we can't just run and get a blood test every time a little thing pops up.  I mean, we could because Dr. Kane put in an order for us to be able to, but it's not fair to Jake.  Even if we did that, we would get the results and then what?  Keep him on meds the rest of his life or stress about every fall?  His body has to learn to no attack his own platelets and we need to give it time.  As of right now, we are in the mind set that as long as Jake is running around with little to no bruises, his number should be high enough.  If he gets full of petechiae or bruises or gets real tired, then those are all signs that his levels are probably below a safe level and we would take him in.  So, just a small patch of petechiae, yes it brought up emotions for me, but nothing to take action over.
     All four of us went swimming again tonight and while there, Jake tripped and fell getting out of the pool.  He cried and cried!  He scraped the tops of his feet (I guess he just missed the step) and fell and hit his mouth.  His lip was bleeding inside but his teeth were good.  He scraped his chin a little but nothing serious.  I sat with him a short while to stop the bleeding in his lip and it finally did.  Poor guy just can't catch a break!  Shortly after that we went back home and called it a night.  The boys are watching a movie with John and excited to stay up late.  I just pray every night that this whole ordeal is over and we are on the up side of things.  It's so hard to tell Jake he can't do things that he should be allowed to do without even thinking twice about them.   I know I will feel much better after the next appointment if his count is still high since there is a possibility he ONLY had a good number because of the steroids.  I'm really impressed with how good he looks though.  He literally has one bruise on him!!  Even before all this, he would have lots of bruises but they were 'normal' and in 'normal places'.  So, to have one is excellent!  For now, we will still be excited about Jake's last report and pray for the best. 

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