Aaron's Hyper IgM Journey

Friday, October 11, 2013

Teacher Troubles

Aaron met his teacher Monday. To say that it did not go well is an understatement. He screamed the whole time and did not want to do what she said. The end result was the teacher stating "not all kids go to preschool."
We did not request a teacher for Aaron because we were worried about his education. We wanted a teacher so that Aaron learns that when he is in school, he has to sit and do what the teacher tells him to. He has never been in any kind of structured environment like preschool or daycare.
I know this is going to be hard for him and his teacher. I hope the teacher can figure out how to help him learn this skill. Otherwise, we will have to request a new teacher. This teacher is used to older kids who sit and listen as she teaches. She does not do much with preschool age.
As you can see in the video, Aaron is very good at doing his school work with the nanny. I also wanted to show this video so everyone can see that despite his serious illness, he is a VERY happy child.

YouTube Video

- Posted using BlogPress from my iPhone

Monday, October 7, 2013

And Adeno makes three

Playing in the PT room

Getting some OT time while doing photophoresis


We just got back from an unplanned, somewhat emergent trip to Cincinnati.  Aaron's gvhd has gotten out of hand over the past month and a half.  The doctor took one look at the pictures I sent her over text message and told us to come back as soon as possible.  And yes, we are on a text message basis with Dr. Davies, the head of the one of the largest BMT programs in the country. 

Aaron was admitted to the hospital since he was being watched closely and had many IV medications and procedures.  This was actually the best inpatient stay we have ever had.  I am becoming a pro at this inpatient stuff and called ahead to have everything set up.  He had his favorite photophoresis nurse, Ms. Carol, as well as PT and OT appointments daily.  We were put on the 7th floor which is a quiet floor with large rooms. Overall, we had plenty to do during the day and were able to sleep during the night.  That is not common in the hospital.

On the second day, Aaron's stool results came back positive for Adenovirus.  Yuck!!!!!  Now Aaron has three virus (norovirus, rhinovirus, adenovirus) that his immune system (or lack of) cannot get rid of.  Dr. Davies believes that this new virus probably aggravated his body and led to the gvhd flare.  Like most viruses, there is no treatment and we will just have to watch and wait. 

Aaron's skin is looking better and his attitude has stayed great during this whole ordeal.  He actually loves going to the hospital because he gets to watch his iPad most of the day and gets to order food from the menu.  He is such a happy little boy!  I thank the Lord for that.  He has no idea that what he is going through is not normal. 

Racing cars with Dad in the hospital

Bundled up in his UV clothing to take a picture with the cow at the rest stop