Kohlton's ENT appointment....

We had Kohlton’s ENT appointment today.  We got there about 40 minutes early, just to be safe and have plenty of time to fill out paperwork.  We ended up being taken back to the room and waiting almost an hour after his appointment time for the doctor.  Tommy and I were pretty frustrated.  We kept trading Kohlton and Kason back and forth.  Once the doctor came in, he looked in Kohlton’s ears and said he would need to have him sedated to be able to tell us for sure what was in his ears.  Tommy and I felt as though this appointment was a waste of time.  They knew Kohlton was 2 ½ and would not sit there to let them put instruments in his ears.  So, our questions were not answered today.  I think that’s what we are more frustrated about.  We thought we would be finding out if the lesions in his ear were part of the histiocytosis or if it was a Cholesteatoma.  So as of right now we have no idea if he will need a 4 hour surgery to remove the Cholesteatoma or if he will need the second chemo during phase three.  The doctor’s office will be calling us to let us know what day Kohlton will be sedated for them to look around in there.  We don’t want him to be sedated again but we do want answers.  As soon as we know something I will let you all know.  Kohlton is feeling great today.  His friend came over to visit him.  Kohlton had a good time with BrayBray and is passed out right now from playing so hard.  I like times like that, when Kohlton can feel and play somewhat normal.  Tomorrow we get the helmet measured for it to be decorated.  I am so excited to see it all done up for him.  I can’t wait to see his smile when it’s finished.  I’ll have to take a picture of his smile and put it on here for all of you to see.  Thank you everyone for all the prayers.  Please keep them coming!