Rough Day


IMG_2597Today was a rough one.  Thomas had his second blood draw to check his AFP level.  Our first one he was a rock star at, he didn’t even cry.  Today, that was a different story.  Not only were there mega amounts of tears, he was poked three times.  Once in the heel, one in the arm, and finally they squeezed the amount of blood that they needed out of his finger.

Thomas cried so much and so hard all I could do was hold him and try to comfort him.  I tried it all, singing, rubbing his back, shshing (if that is a word), nothing worked.  When it was finally done and over with and we were heading to the car I started to cry.  Ugly Mom tears.  I felt so terrible for my poor baby.

This is another part of BWS that sucks.  Thomas has to get blood work done every 3 months until he is 4 years old.  That is an awful lot of needle pokes for him.  Not to mention that these appointments co-inside with his well child visits, so that makes 5 needle pokes today.

Thomas is like a human pincushion.  Once we got home and I was able to give him some medicine, he was back to his happy self.  I still was feeling like shit Mom and cried some more.

We won’t know the results for a few days, hopefully his numbers are dropping like they should be.  The reason they do this testing is that it will indicate if there are tumors growing in his liver.  This is another risk for BWS children.  Not one type of cancer risk, but two!  One that affects the liver, and the other the kidneys.

I’m hoping and praying that the number shows a decrease and we can put this one behind us for a little while.  In a little less than a month we have the ultrasound to check his abdomen and make sure that is looking good too.

Trying to remind myself to take it one test a at time and not get worked up about things.  Take them as they come.  For now Thomas is resting and then I am sure will be back to playing with his freezer toys and wanting to sit up.

He was such a brave boy today.  My Mom reminded me that he won’t remember these times, but he will remember how much that we loved, hugged, and kissed him up.  So I am going to focus on that.

Gotta to go and smooch my boy now!


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