Aaron's Hyper IgM Journey

Thursday, September 26, 2013

Ahead and behind: the IEP

I went to Aaron's IEP (individual education plan) meeting.  Everything went well.  They discussed the results of his assessment.  He is ahead of his age in cognitive and communication skills.  He has fallen behind in the areas of motor functioning and independence.  Neither of these surprise us since the bone marrow transplant basically knocked him off his feet (literally) and he had to start all over again with muscle strength.  His lack of independence means he cannot dress himself, use the potty by himself, or go up and down the stairs by himself.  All of these things are also a result of decreased muscle and bone strength.  The steroids have weakened Aaron's bones to that of a geriatric person and they have weakened his muscle as well.  Fortunately because he is very young, he will be able to recover his bone and muscle strength.  We just need to get him off of these steroids. 

As a result of the IEP, Aaron will qualify for a teacher to come to the home once a week for 45 minutes.  We are looking forward to him starting "school."  Due to his weaknesses, he may qualify for occupational therapy.  However, I didn't think to ask about that during the meeting and I would have to set up an additional meeting to find out.

Friday, September 20, 2013

GVHD lingers on

We left Monday morning for another trip to Cincinnati for Aaron's photophoresis. Such anxiety filled my heart as we got closer and closer. Being home is a bit of an escape from the reality that Aaron suffers from a deadly and difficult to treat complication of his transplant. Driving to Cincinnati is a reminder of this fact. And sadly, Aaron's gvh has flared to cover most of his body since we were here four weeks ago. He is also having watery diarrhea, a very bad sign.

The doctor told us to plan to stay longer than usual. She was planning to admit him after seeing the pictures of his skin. She met with us first thing Wednesday morning. She was not pleased with his progress since the last visit and decided to add influximab. This is a drug we stopped several months ago because the insurance company refuses to pay for it. Each dose is several thousand dollars and they say there is no evidence it works in gvhd. They need to send a representative to the hospital because Aaron made huge improvements overnight after receiving this infusion. We did a second dose today. Aaron is improving enough that the doctor is increasing his steroid and sending us home.

I am overjoyed that we avoided a hospital admission, but I wish Aaron was doing better. This setback means our trips to Cincinnati will be continuing for quite some time longer (probably a year or two) and we have no hopes of an immune system anytime soon.

If anyone can think of some good fundraising ideas or knows of any companies that donate to charities for tax breaks, please let me know. Each trip to Cincinnati costs $800 in gas, hotels, and copays.

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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.

Monday, September 2, 2013

Summer in review (part two)

I was fortunate to make it to Spokane, WA for my sister's surprise birthday party.  We had massages, spent time with her beautiful family, and drove to Portland to visit some of her friends.  The weather was beautiful and she was delighted to bring her Porsche out of the garage and drive with the top down for the road trip.  I miss her tons and wish we lived a lot closer.

My brother and his family took a two week vacation and I am super thankful they decided to go to Disney World.  Living in Orlando often means family comes to me.  I can't even remember how long it has been since I have seen Craig and Katie.  We had lunch at the NBA restaurant and afterwards the kids got soaked running around in the water.   Serena enjoyed having three friends listen to her talk and talk and talk. 

With major reluctance, we took Aaron to the community swing set.  Aaron's doctor said it was time to start getting Aaron out of the house a bit and take him to the park.  We went at eight in the morning.  He was loaded up with sunscreen, UV clothing, a hoodie, and his wide rimmed hat.  I was still scared to death.  We stayed outside for maybe 15 minutes.  Aaron really did not have that much fun.  UV light is deadly to him and we have to limit his exposure.  Next time we will try a park with more activities and maybe earlier in the morning.