Thursday, August 8, 2013

Being Blind

being blind

Sometimes I think I am blind to the situation with Jordan.  I look at her and think there is nothing wrong with her.  She is the same child she has always been and we live our life like we always have.  While this is great and it keeps that normalcy in our lives and our household sometimes I worry it is not the best thing to do.  It is also hard to be blind when she is covered in bruises and petechiae.  They are a glaring reminder that she really is sick

Last week her platelets were 31K and we decided to not treat her with anything.  The Nplate has stopped working and it was making her very sick, she was either throwing up or having diarrhea everyday.  That is not a way to live and it totally sucked.  We were all okay with not treating and seeing what information the doctors could find out about Nplate.  As the week has gone on her platelets have dropped even more.  She is getting frustrated and a little worried about all the bruising and yesterday said “I would not mind taking steroids because I don’t want to have to explain to everyone why I have all these red dots and bruises.  I don’t want to go to school and explain why I can’t play all the games other kids can”  My heart breaks for her.

Platelet Update:

Jordan’s platelets are 6K.  We started steroids today and we went through about 5 different options that we can do.  Some the doctor really likes, some he is neutral about and others he doesn’t like at all.  We have a lot to talk about over the next few days.  One option is an oral medication similar to Nplate.  Jordan is nervous about this one because of what happened with the Nplate.  The other is CellCept.  Since she was on that when her platelets started to drop I am not thrilled with that one.  Although she is nervous at this point we are going with the oral option that is similar to Nplate.  Praying that it will work and she can get back to doing the things she loves.

Today we received her nueropsych eval and I was a little taken back by some of the results.  I had to read it 3 times before it sunk in.  She tested much better this time than the first time although there are definitely weakness that we need to work on.  One of the diagnosis is a catch all which basically means, we don’t know.  What else is new.  The other is a Nonverbal Learning Disability, which is why she has problems with spelling.  Funny because I am a horrible speller so I might have the same problem.  In the end it was a mostly positive report and the things we need to work on we will.

Hopefully over the next three weeks we will get her platelets straightened out, we will work with the school to get her ready for that and we will enjoy the rest of the summer.  I am looking forward to spending time with family, relaxing and just having fun.

We hope you are all enjoying your summer! Thanks for the continued prayers and support!