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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Aaron's first major ouchie (sort of)

We arrived in Cincinnati a day early to do a DEXA bone scan. Results came back with a Z-score of -4.5. That is pretty darn awful. On the bright side, he can recover quite a bit as long as we can get him off these steroids.

Wednesday morning we went for his treatment. I got him out of the car, he tripped over my foot and boom. He fell on his knees and hands and got his first nasty scrape of his life. He has had many ouchies caused by poking, chemo, and gvhd. However, this was his first normal ouchie. He did a pretty good job scraping a good amount of skin right off his knee. He was pretty tough about it and enjoyed watching the nurses clean it up.




The rest of Aaron's body is falling apart. Eyes are getting worse; liver and kidneys are pretty much lousy; and his blood pressures would send a normal person straight to the ER to avoid a stroke. I am praying that he can get off these steroids. Thanks to some awesome moms that I have never met, I am hopeful that Aaron can still recover. A network of people on Facebook has given me immense support. Their children have been down the same road and are doing relatively well now.

As I have been preparing Aaron's homeschooling lessons for next year, I have felt overwhelming joy. God has been good to us! Sometimes it is hard to see, but lately I am seeing it. Aside from the fact that Aaron's illness just plain sucks, we have been given so many other positives. I have gotten to spend so much time with Aaron that I never would have otherwise. For the upcoming school year, I have come up with some super fun Bible studies, science projects, and other activities. I have done extensive research and found the best reading and math curriculums for Aaron that far exceed what the Common Core could ever teach him. I am looking forward to joining a homeschooling group as soon as his immune system improves that will give Aaron some fantastic peers to build friendships.

Please send some prayer or light or whatever you believe in our way. Aaron has got to get better soon!!!



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Location:Crescent Ave,Covington,United States

Apple pie diet

Aaron was admitted for a week to the hospital in Cincinnati. His tummy had gotten HUGE! His intestines were very inflamed and putting pressure on his organs. He could not drink a full glass of water without throwing up afterwards.

The only treatment for this was to have nothing by mouth to eat or drink for at least two days. The first day was a nightmare. First he was asking nicely and then begging. By the end of the day he was screaming and hitting me (something he never does).

The next morning, when Dr Davies came in, he was begging for pie. She said "let him have pie!" The only thing he ate for the next two days was apple pie filling. He was a new kid. He began laughing and played all day. He told jokes and made pretend pies with the nurse. He showed the doctor his tummy. He did not scream at anyone. This was unusual behavior and absolutely amazing!

By the time we got home, his tummy had gone down two inches. He still has a long way to go but he seems more comfortable. As we go down on steroids, he should get even better.






Aaron is still holding strong with improved gvhd. We will finally try to decrease the steroids again next week. This will be a major accomplishment.

Aaron's behavior is still not great. He has not been a very happy kid much of the time. I pray that this improves. I look forward to this summer. Serena will be here and the kids can play together.

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