Impressive

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

Healing

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.

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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. 

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.

Excited and nervous! Going to school!

Let me start by saying God is Good! We did some homeschooling last year with Aaron, but we will take it up a notch this year. We got permission from the doctor to join a homeschool group this Fall. We will go once a week for three hours. Aaron will wear his mask and join a class of eight kids. I am over the moon! All the kids are homeschooled and we can leave if any other child is sick.

Classical Conversations is a fantastic program. The children are guided by a tutor and the concepts are reinforced at home by the parents. He will learn science, arts, classical arts and music, Latin, and history. Reading, writing, and more math are taught at home. Children from this program are even more sought out from colleges than those from public schools. It is hard to find the good from a bone marrow transplant. However, I would have NEVER considered homeschooling otherwise. I am finding it is a phenomenal education. The parents say that the social events are so many (parties, science museums,etc). Socialization is not a problem at all with homeschooling.

Check out the video on this link to see what Aaron will be doing.

http://www.classicalconversations.com/academic-programs/foundations-program-k4-6th

Thank you Lexi, Amanda, and Ticiana for guiding me down this path.

Aaron's tantrums are still around, but he is better. He had his first play date with the beautiful little girls next door. Serena hosted a super fab tea party. Aaron took about thirty minutes to come around, but in the end everyone had a good time. A special thanks to Ellen for being patient with us. We have the nicest neighbors. In fact their nickname is The Nice Neighbors. I won't tell you the nickname for the neighbors on the side. :(

We went down on the steroids again and the GVHD has flared up. I am hoping that this resolves with photo therapy next week.

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Things are coming together

We left a day early and drove to Pennsylvania. We stopped by Steamtown, a train museum in Scranton. They had one of the original Big Boy Steam trains. We saw a real roundhouse, a turntable, and Aaron went on his first real train ride. The kids were in heaven.

Then on to Cincinnati. After getting only four hours of sleep each night, I broke down in tears. Finally, someone listened to me. I explained that I cannot function anymore. I cannot take care of Aaron or myself when I am exhausted. The pain team was put in charge of the situation. They first want to focus on Aaron's pain and make him more comfortable. They also are adding melatonin to help with sleep. So far his sleeping hasn't gotten better, but there is a Plan B if needed. I have also gotten permission to cut off his food/drink intake in the middle of the night. This will be a hard, but very much needed change.

Aaron's GVHD continues to be amazing. His skin is softer than ever and we should be able to wean even further in a few weeks. He made it to a level where his body can start healing. His kidney function was better this time. I was sad to find out that the discoloration on his face won't ever go away and he will be reminded of his transplant every time he looks in the mirror. I pray that he does not have a hard time because of it.

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Daddy's coming home!

What an absolutely horrible month! I really hate to be negative, but there is no way to sugar coat the events of these past few weeks.

Aaron's tantrums have gone from bad to worse. During one of his tantrums he was yanking on my chair so hard that he fell backwards and fractured his L2 vertebra. After that he could barely walk and his tantrums have escalated. We believe his behavior could be due to pain. Aaron does not usually behave badly. Something has to be wrong.

He wakes me up about four times each night for up to an hour each time. I am getting 3-4 hours of sleep. I was getting 5-6 hours a night which wasn't enough and now I am severely sleep deprived. I am not functioning well and have daydreams about sleeping in the garage in my car so no one can find me to wake me up. He is hungry, thirsty, and needs to use the bathroom. I wish I could ignore him, but the doctors say I need to accommodate his needs.

Michael has been stuck in Trinidad. His passport expired this month. He has been trying to renew it for over a month. Part of the government went on strike and passport production has been halted. He had to go there before his passport expired or else he would not be able to travel there to get the passport. Being a pilot, he cannot work without a passport.

We got a text from Mike just now that he is on a flight to Orlando. Thank goodness! We are all excited to see him. He was gone for his birthday and Father's Day. We look forward to a few celebrations and I look forward to sleep.

Here is Serena's reaction to her daddy coming home:




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