Aaron's Hyper IgM Journey

Sunday, May 27, 2012

A Day of Prayer and Running

 Aaron learning how to kneel in prayer in the Meditation Room at the hospital.

 

Aaron's first experience at a Catholic style chapel.


The day started as usual.  We woke up.  I unhooked Aaron's IV line and he got his 10 morning medications.  We attempted breakfast, but Aaron wouldn't eat.  Then he threw up.  I was worried and called the doctor.  Of course like everything else, we will watch and wait.  Then to my surprise... Aaron was running all over the room laughing and playing.  I decided he needed to get out of the room and get his energy out.  He ran for almost 45 minutes!  I found a couple of places in the shade outside and then some isolated places inside. 

We went to the hospital and explored the chapel area.  First we went to the Meditation Room.  We knelt down and prayed.  There are many children that need our prayers, but several have stuck out lately and we wanted to take some time to pray for them.  We ask that you please take a moment to pray for them as well.  Jill had her transplant around the time of Aaron.  She is in the ICU with an infection that is resistant to antibiotics.  Both of her sisters have also required BMTs.  Rashik is an infant who's BMT did not work and is in the ICU with lung problems.  Our next door neighbor here at RMH has a 20 year old with cancer of the hip that has spread.  A few days ago, his mother was driving him to a clinic to preserve his sperm before chemotherapy.  While driving they were in a head on collision.  He broke his hip and is in a full body cast.  And lastly, there is another little boy that is close to our hearts.  He is also affected with hyper-IgM (like Aaron) and had is transplant about a week ago.  We pray for him and his family as they continue through this journey and all of its ups and downs.

This evening, Aaron still had more energy to get out.  We went to the shaded patio and played hide and seek.  Aaron is not good at keeping his eyes closed while I hide, so I had to be a little sneeky.  We had a blast.  He ran around for another 20 minutes and screamed when I told him it was time to go inside.

Saturday, May 26, 2012

Lake Nona Community Bazaar


What a success!  The fundraiser was held at Spring of Life, the Methodist church down the road.  Serena has attended VBS there two years in a row, and most everyone knows her. 

Lori is superwoman.  She arranged food trucks, including a smoothie truck and bakery truck.  Publix came out to cook hot dogs, which I heard were delicious.  DJ Corinthian got the crowd jamming with his tunes.  A police officer doubled as a face painter at the last minute when the original woman cancelled.  There was a henna artist, a caricature artist, and vendors selling art, bags, make up and more.  Shaun Murray, a four time world champion wakeboarder, displayed his talents by singing with the children.  I heard he was a huge hit!

Lori managed to have gift certificates donated for the raffle and various items for a kids raffle.  She even  reorganizing after two major last minute cancellations.  The only thing Lori could not manage to pull off was getting Aaron, Michael and I home for the event.  We are sad we could not make it, but ecstatic about its success.  The event raised over $1000.00. 

THANK YOU TO EVERYONE THAT HELPED, DONATED, AND WENT TO THIS AMAZING EVENT!!!

Friday, May 25, 2012

Michael's Big News!!!!




Michael got a call yesterday from the National Marrow Donor Program.  HE IS A MATCH!!!!  Someone with Leukemia may need Mikes bone marrow.  We couldn't be more excited.  They seem very concerned that Mike has been to Mexico many times.  He goes several times a year with his job (he is a pilot).  We will see if they end up using him or not.  They want him to do the testing within a week's time.  We cannot think of a better way to give back.  What a calling Michael has been given. 

There are people who die without ever finding a match.  This does not have to happen.  Being placed on the registry is super easy.  Follow this link and you will be one step closer to being someone's life saving match.

http://marrow.org/Join/Join_the_Registry.aspx



Wednesday, May 23, 2012

Diarrhea

I don't think Aaron has ever had diarrhea. Diarrhea is never a good sign, but it is especially a problem during BMT. Almost every kid gets it in the first few weeks, but not Aaron. Today it came out of nowhere. We are praying it is nothing. Possibilities could be a virus or gut GVH. At this point the doctors are going to wait and watch (the philosophy here at CCH).


- Posted using BlogPress from my iPhone

Friday, May 18, 2012

Life is Good Right Now

I came home for the weekend to work at Publix. I will work Saturday and Sunday. Since they did not need me today, I spent the day working in the house.

We are putting in hardwood laminate flooring. Anyone who has been to our home knows that the carpets look trashed. The previous owners somehow destroyed the carpet of this brand new home in only two years. We have tried everything to clean the carpets and they do look much better. However, carpet is not safe for Aaron and who knows what could be lurking in ours. The floors have to be done at least two months before Aaron comes home and then I will have the house professionally cleaned.

I spent the day moving everything upstairs and out of the way. I also realized that we still have a crib in Aaron's room. He hasn't slept in a crib since we left home six months ago. I will have to get him a new bed.

We have a lot to do to prepare for bringing Aaron home. But this is exciting. There is a lot more joy in preparing to bring him home than there was in preparing to leave for the scary transplant.




This picture was taken a couple months ago with Mike and Serena (we miss her terribly).

A really amazing mom named Lori has spent the past few months planning a huge event called The Lake Nona Bazaar. This is a charity event in Aaron's honor. There will be several food trucks, a cafe/coffee truck, bakery truck, Disney DJ, henna artist, face painting, and booths with jewelry, garage items, and lots more. This is amazing!!!!!




I am sad that I will not be able to attend. It sounds super fun. She is even planning children's activities. The foundation will help advertise for free on the radio, tv, and newspaper. I went to McDonald's today and saw the flyer hanging up at both entrances with Aaron's picture on it.

Btw... Support your local McDonald's. They have been soooo good to us. If you have spare change consider dropping it in the box for the Ronald McDonald House.

Sunday, May 13, 2012

Reflection

Wow!  I just went through all of the pictures since we left home for Cincinnati.  I know we have been through a lot, but reviewing it all in 5 minutes seemed overwhelming.  This is one of my favorite pictures.  It reminds of the little boy we had before transplant.  His favorite thing to do was run.  Now, he can hardly run.  In fact today he is limping and I am concerned that he has injured himself.  We used to struggle to get him to eat; now he eats almost as much as we do. 

I have to remind myself why we decided to do this transplant.  We truly want the best life possible for our son.  Without transplant, his life would likely be filled with many more infections, ICU stays and a short life span.  Now he has the chance at a full and normal life.

I saw a promotional ad for a motivational speaker today.  It hit me very personally.  "Instead of saying 'I have to', say 'I get to.'' (Jonnae Taylor)  So many people say I have to go to work, I have to go to the grocery store, or I have to study.  There are those out there that only wish they could do any of those things.  Some day Aaron will say "I get to play outside" or "I get to have friends" or "I get to have a sip of my Mother's drink" or "I get to go swimming." 

Saturday, May 12, 2012

National Train Day

Aaron "Mommy what you drinking?"
Chandelle "soda but it is yucky"
Aaron "oh it's kinda like medicine"

Keep in mind Aaron has never complained about taking any of his 19 medications. He takes them like a champ and doesn't make faces. I guess his true feelings came out today. :-)




We made this train in celebration of National Train Day. We went to see trains go by twice today and watched Chuggington and Thomas the Train. We also played with his toy trains. So really, today was just like any other day for us. Lol.

- Posted using BlogPress from my iPhone

Friday, May 11, 2012

Boredom setting in

Things around here are really starting to get boring.  The few activities that we have found to be safe for Aaron are getting old both to Aaron and his parents.  We need to get creative and think of some new things.  We did enjoy ice cream in the park Thursday evening.  We sat in the shade and did not let Aaron touch anything.  He sat on my lap and we had strawberry ice cream with M&Ms.  Aaron did not like the M&Ms, so I got his.  The park was nice with no people around which made it more comfortable for us.

A week ago one of our BMT friends took their son home to Florida.  Next week four more of our BMT friends are going home.  Most of the kids that were transplanted around the time of Aaron have gone home or are going home very soon.  We are trying to focus on the positive and not be discouraged, but we so badly want to go home. 

Aaron had two checkups this week.  His skin GVH is getting worse again.  His skin is the worst it has been since we left the hospital.  The doctors are still lowering the steroids and hoping it will not get worse.  Otherwise, we will have to go back up on the steroids.  Going up on the steroids means being here longer and more complications for Aaron.  His liver numbers are getting worse as well.  His kidneys remain about the same.  Hopefully, things will be better next week.

Saturday, May 5, 2012

Playing Drums

video
This was the first time trying out his new electric drum set.  Aaron loves to play again.  He laughs all day and plays and dances.  He hardly wants to watch TV at all any more.  He is almost 100% back to his normal personality.  I love this kid!!!

Thursday, May 3, 2012

I love you Lord, heal my kidneys





Since the day we found out about Aaron's kidney troubles, we have prayed. Aaron says "I love you Lord, heal my kidneys" several times each day. The good Lord has heard little Aaron. His kidneys have improved by 50%. At this rate he could make a full recovery and possibly soon!

This picture is of Aaron playing with his SpongeBob bubble wand on the patio of RMH near our room on the 2nd floor.

- Posted using BlogPress from my iPhone

Tuesday, May 1, 2012

A beautiful weekend

Thunderstorms appeared off and on all day Saturday.  We went to the mall for our morning walk.  Aaron did great and walked quite a bit himself.  Michael bought a 1000+ piece train from the Lego store.  Aaron and Michael spent the whole day working on the train and I was able to catch up on other things. 

Sunday we ran errands in the morning and then dropped Michael off at the airport.  After a long nap, Aaron wanted to play for the first time in months.  We got on his play mat and played trains for a long time.  He did not have any rages all weekend.

However, he did cry himself to sleep which was heart wrenching for me.  We have been working with a behavioral therapist to help Aaron become more independent again.  Our goals are sleeping and eating on his own.  She assured me that after one week, he should be sleeping without crying as long as we followed the plan.  I hope so.  As far as eating, he is doing better.  He will eat some things on his own and he taught himself how to cut his cheese with a fork and knife. 

Monday we went to clinic for labs.  His liver numbers are almost normal and his skin GVH is getting better everyday.  His kidney numbers are slightly improved.  His WBCs and ANC (two numbers that are very important post transplant) have fallen drastically.  He is currently getting therapy to help improve his platelet numbers since they do not increase.  He has developed an antibody that attacks his own platelets.  His body still has a lot of fine tuning to be done.