Aaron's Hyper IgM Journey

Friday, September 26, 2014


When the doctor looks at the x-ray and says "impressive," you know it's not good news. Aaron has been in extreme pain lately. He doesn't want to get out of bed. He barely eats or drinks. I took him to the orthopedic yesterday and sure enough, another lumbar fracture. The gas trapped in his intestines is also leaking out into the abdominal cavity causing problems. My heart breaks for my little guy. He needs a miracle!

School is going a little better. He enjoys it and has been talking a little more. His teacher and classmates are so sweet to him. I am glad pre-k is optional or Aaron would be really behind for next year. He has been either too tired to get out of bed, at a doctors appointment, or in the hospital the past three weeks. We have not been able to do much school at home. I am noticing more and more that he is getting behind. I really don't care. All I want is for my son to be healed!

I can't wait for the day the doctors look at his labs and x-rays and say "unremarkable"!!!!

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Location:International Dr,Orlando,United States

Friday, September 12, 2014


Let's just skim over the last week and a half... 2 ER visits, ICU stay, unplanned trip to Cincy, low sodium scare, unnecessary peripheral line placement and subsequent infection, lump on right shoulder, and blood transfusion.

I am going to just move past all of the bad stuff because I have some awesome news to share. First, all of the previous issues are resolved and Aaron is doing just fine. Second, Aaron's liver numbers are less than 100 and are the lowest we've seen since transplant! This is huge news. A sign that Aaron can and will recover.

Aaron also got plenty of time to spend with his absolute favorite friend, Ms. Carole.

YouTube Video

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Thursday, September 4, 2014

Adventures in Homeschooling

So far homeschooling is going fairly well.  I absolutely love our Classical Conversations community.  They have welcomed us very generously.  Aaron has been to class twice with the other kids.  All the other kids sit in their chairs and listen and participate.  They are adorable.  They go in front of the class and do presentations all by themselves, they sing songs, do art, and jump through hoops for skip counting.  Then there is Aaron.  Aaron sits on my lap with his dog and his blanket covering him.  He will not participate and screams at Ms. Lopez if she talks to him.  Sigh.... 

But, I am super proud of him! He has gone with me to the front of the class for presentations.  The first time he was angry with me the whole time because I did not know how to set his trains up properly, but refused to help me figure it out.  The second time, he was quiet the whole time and faced the class as I showed them his favorite recipes.  When Ms. Lopez asked him a question, he very politely said "I don't know" instead of screaming at her. 

He also loves the art/drawing time.  This is a bit of a surprise to me.  I had no idea.  Although, he will not participate with the activities the class does, he is very good at sitting and watching.  When we go home, he knows most of the information the tutor has taught and he is excited about it. 

I bribed him to sit in his own seat during the last class.  I told him I would get him the Play Doh Meal Making Kitchen (he is just dying to have this) if he sat in his own chair the whole time.  He actually sat in a seat by himself for about 30 minutes.  I did not get the toy yet, but I am hoping he will earn it next week.

Our school sessions at home are going really well also.  We do reading, math, writing, and reviewing of our CC memory work (the info presented in class each week).  His favorite part is still snack time.

I just found out today that the school system is finally sending out a teacher.  She specialized in special needs pre-K and is a behavior specialist.  She is certain she can correct Aaron's behavior issues by the end of this year.  If this is the case, she is really sent from God.  I have been praying for help in this area.  Aaron is a great kid, even a sweet kid.  However, he definitely needs to learn how to interact with people and children.  He has been isolated almost all of his life and does not know how to deal with social situations.  He screams at anyone who says hi to him or asks him a question.  I don't know what to do about it. 

Everyone has been confused: am I homeschooling or going through the school system?  The answer is for now: both.  Although I absolutely love homeschooling and think it is a superior education than public school (just my opinion), I do not want to cut ties with the school system.  The school system, by law has to provide help for Aaron if he has any deficits (which he does).  Since Pre-K is optional in the state of Florida, the school teacher only comes out for 45 minutes a week.  This will be perfect to work on his behavior issues, but no where near enough time to help keep him on track with school.  Homeschooling and CC are his true "education."  Next year when Aaron is ready for Kindergarten, I will have to decide whether he goes to public school or to register him as a homeschooler.  I hope to continue homeschooling, but I will put him in public school if it better suits his medical/behavior needs. 

Monday, September 1, 2014

Surviving August

Late July and all of August has been a whirlwind of events.  I don't think I can remember them all.  Aaron had one of his central lines taken out.  This should have been, and still is, a victory.  This should have been a time to celebrate.  On the contrary, he had the "minor" surgery and we drove home to Orlando (from Cincy).  His feet swelled up so badly that they looked like pieces of raw chicken with toenails.  He could barely walk.  The surgery site was extremely painful, his abdomen became very hard where the line was removed and his tummy and back were rapidly turning black.  After two days of being home, Aaron did not get better and I took him to Nemours ER.  What a huge mistake!!!!  They admitted him to the hospital and two separate doctors told me they did not feel comfortable treating him because he is too complicated.  They didn't have to tell me that twice.  If they aren't comfortable, than I am not either.  Aaron was on a medical flight the next day back to Cincinnati. 

This was Aaron's second flight in his life and both were medical flights to CCHMC.  The crew was amazing.  We had two pilots, a flight nurse, EMT, respiratory therapist, a general emergency nurse.  We required an ambulance on both ends of the flight to transport between hospitals and airplane.  Arriving in Cincinnati was a huge relief.

The next morning Aaron's doctor and the surgeon came in to evaluate him.  Their conclusion: Aaron is just fine!  The called it the world's largest bruise.  They said it will heal, and they were right.  A month and a half later and the surgery site is now fine. 

The trip was not completely a waste of a medical flight.  Aaron's vitals became out of control while we were there.  He required five blood pressure meds within a four hour time period and had to be placed on oxygen overnight.  Aaron's body is really taking a toll.  Two days later, we rented a car and drove home.

After being back home for a week, Aaron's eyes turned yellow.  His liver has been bad for a while and now his bilirubin is very elevated.  The doctor decided to take him off all the meds that we possible can.  These include his antiviral, antifungal, and antibacterial.  This scares me since he still has zero immune system.  I think it is making a difference since his eyes are no longer yellow.  We go to the hospital here in Orlando tomorrow to retest his labs.

August ended very positively.  Aaron began school.  He loves it.  I will post more about it in my next post.