Aaron's Hyper IgM Journey

Wednesday, September 4, 2013

Starting school and glasses

We are working with the local school system to get a home schooling plan for Aaron.  Because of his isolation, he has been delayed in certain areas.  His delays are due to exposure rather than lack of ability.  For example, he was delayed in cutting with scissors.  This is completely my fault because I thought I was supposed to keep scissors away from three year olds.

Last week, three teachers came to the house to evaluate Aaron.  There was a speech therapist, vision therapist, and a general teacher.  They spent two hours going through a series of questions and tests and puzzles.  They were amazed at Aaron's ability.  All three of them said that in all years they have taught, Aaron is by far the smartest three year old they have ever seen.

We will have a meeting with the school board at the end of the month to evaluate Aaron's needs and come up with an individual education plan (IEP).  Most likely a teacher will come to the house 1-2 days per week for about an hour to keep Aaron on track.  

I am thrilled Aaron is smart for several reasons.  Chemotherapy affects the brain and drops most people's IQ several points as well as causes some attention problems.  The most critical period in brain development is early childhood and the worst time to expose the brain to chemo is between two and three years of age.  Aaron began his 10 day chemo regimen two months after his second birthday.  Spending a lot of time in the hospital during the first years in life can also greatly reduce stimulation and lead to delays.  Aaron has spent nearly a year and a half of his life either in a hospital room or in a one room suite at the Ronald McDonald House.  Finally, we will soon be put on a 50 year plan to pay back all of Aaron's medical expenses from the hospital.   Our responsibility of the medical expenses  (after insurance has paid) is more than the price of four years of college tuition, room and board.  Aaron will definitely need to use his brain to get a college scholarship. :))) 

Our latest ophthalmology appointment resulted in glasses.  I cried!  The glasses actually turned out to look better than I thought and Aaron doesn't complain a bit about them.  I was temporarily sad because it is just one more thing on our long list of "things" to deal with.  Aaron's cataracts have gotten so severe that his eyesight is compromised.  The doctor said he may or may not need cataract surgery, but he is definitely heading in that direction.  Hopefully the cataracts will slow down because the doctor won't even think of surgery until Aaron has a functioning immune system (which he is not close to having).

On a brighter note, we have enjoyed several months free of overnights in the hospital.  We only head to Cincy every four weeks now.  We are continuing to go down on the steroids with some success.  I feel like we are making two steps forward and one step back with each decrease.  Eventually we will cross the finish line.

No comments:

Post a Comment