Aaron's Hyper IgM Journey

Sunday, December 28, 2014

Christmas 2014

Aaron wrote a letter to Santa asking for three lego train sets and a cat to go with his dog family.  Christmas morning he woke up and said he heard Santa while he was sleeping.  He did not want to wait one minute to open his presents.  He was dying to get his Lego train sets.  He went through his stocking tossing everything out quickly with little interest.  Then he moved on to some of the presents Santa left.  Each present he tore open quickly and with each present he showed more and more disappointment on his face.  Finally, he said "Mommy, I am tired.  I want to take a nap."  I asked if he was ok and he said no because Santa was supposed to bring his Lego set.  While he was napping, we brought the Lego train set over from Ronald McDonald House (Santa left it there for some reason).  When he woke up, he couldn't have been happier to see the Lego Train Set and his new cat (named Baby Tiger).

He slowly opened up several more gifts over the next few days.  He really enjoyed Christmas and all of his presents.  He decided Christmas is now his favorite holiday.  He is upset that Santa only brought one of the three Lego train sets.  We are learning what the words grateful and ungrateful mean.  :)

Aaron's health has gone from barely living to fantastic in three short months.  His kidney and liver numbers are so close to normal it is unbelievable.  The doctors didn't know if his kidneys would recover at all and were certain he would need dialysis long term.  Not only does he not need dialysis, his kidneys are performing better than they have since he started chemotherapy three years ago.  His liver numbers have been above 100 and usually in the 300-400s (very, very bad) for three years as well.  They are now consistently below 100. 

Aaron's energy is driving me bananas!  He has so much energy and is so full of goofiness.  Unfortunately, his bone strength and muscle strength are lagging behind.  What he needs is to get out of bed and run around.  He reminds a bit of the days he would run a mile a day and say "Mommy, I can't stop, I can't stop!"  He does get out of bed everyday.  He is working hard with physical therapy and occupational therapy.  He can walk, but still must hold on to someone's hands for stability.

He will be discharged within a week.  He needs photophoresis four days a week which will require us to stay in Cincinnati for a long time.  I am thinking we will be here 6 months to a year.  What happens after that is still unknown.

2015 will be a new adventure.  I don't think I will be posting very much more on this blog.  Although it focuses on Aaron, it was created to share the adventures of our whole family.  With all the changes in my life, I will probably just post smaller updates on Facebook.  I may start a new blog in the future, but I am not sure.  Thank you all for rooting us on during each and every "adventure" we have faced.

Tuesday, December 2, 2014

Thanksgiving Week

Aaron. He never stops amazing me. Before transplant I had the most beautiful, energetic and happy child. I couldn't believe God had blessed me with the coolest kid in the world. After transplant, I saw my child suffer from pain, fear, anxiety, eating problems, motor skill disorders and much more. I actually mourned the loss of the child I gave birth to and began to accept the new child that he had become.
In my wildest dreams, I would have never believed the impossible to happen. My Aaron, the funny, happy, energetic son has returned!!!! Aaron is happier than I have seen him in years. He makes jokes all day. He doesn't scream at the doctors anymore. In fact, he pretends baby dog has eaten chocolate and he has the dog throw up on the doctors and nurses instead. He is having fun with OT and PT and anyone who comes to play with him. He never would interact with people before unless to scream at them.

Aaron still requires oxygen at night. We are going to start trying to wean his tpn. He drinks a ton but doesn't eat enough. We have speech therapy helping with that. He is also not strong enough yet to walk much. His skin looks better than ever. In fact, overall, he hasn't looked this good since transplant. We will definitely be in the hospital for Christmas. Aaron loves the hospital, so he won't mind a bit.

We also had Serena for a week. I absolutely love that girl!!! She and Aaron had tons of fun. They made snowflakes and snowmen. They sang songs. Serena really enjoyed music therapy and made up all the songs during their one hour sessions. Her creativity blows me away. She even helped Aaron with his school work.

- Posted using BlogPress from my iPhone

Saturday, November 22, 2014

Life changes

The past six weeks have been by far the toughest time in my entire life. Thankfully, Aaron has pulled through and continues to do well. His kidneys are at 50% and nephrology no longer follows him. He is on oxygen only at night. He is on tpn for nutrition since he doesn't eat enough. He is also making great strides with walking.

We are selling the house. We will live at Ronald McDonald until Aaron is healthy enough to move.

- Posted using BlogPress from my iPhone

Tuesday, October 28, 2014

My miracle child

Aaron woke up at four o'clock this morning. He sleeps most of the day, but at 4am he decided he was done sleeping and ready to watch movies. Tired, but elated, I dragged myself out of my chair bed and sat next to him. We watched his new cooking movies he received for his birthday.

Aaron has proven to be one tough kid! The nephrologist came by this morning and said Aaron no longer requires dialysis and we can take out the dialysis lines. He said he is shocked; he was certain Aaron would need dialysis for weeks to months based on how sick his kidneys were. Aaron has been a peeing machine lately requiring frequent bedding changes. Looks like he is making up for lost time.

The physical therapist brought in a table and chairs for Aaron to start working on strength. He laughed and played and smiled and laughed some more as he cooked for his doggies. My heart was overjoyed!

The next step is walking. Aaron can't even stand up at this point. Once he has worked up his strength and can walk, we are out of here!!!!! I really cannot believe it.

Posted using BlogPress from my iPhone

Saturday, October 25, 2014

Out of the ICU.

Aaron has made huge progress in the past few days and has been moved from the ICU to the BMT unit. He is completely off the bipap mask. He still requires a nasal cannula to deliver a low amount of oxygen. His lungs will take awhile to completely heal.

Aaron's kidneys have been improving as well. He has increased urine output from zero to 800ml per day. He is still requiring dialysis for about 50% of the work.

Michael has been helping him try to stand four times a day. He is still too weak. As shown in this picture, he is now able to sit up in a chair for short periods of time. He is still exhausted and spends most of the day resting.

His gvhd is holding steady. They took him off cyclosporine (one of his big gvhd meds). This medicine has hit his kidneys really hard. We hope that his gvhd does not worsen with this big change.

Michael and I take turns caring for Aaron.  Serena is missed dearly.

Posted using BlogPress from my iPhone

Sunday, October 19, 2014

Chocolate, exercise and escape games

Aaron's was extubated from his ventilator Thursday and placed on a high pressure bipap mask (similar to cpap but stronger). He wears this super tight and restricting mask like the champ that he is. He complained at first only because he wanted to drink and they wouldn't let him. After using his sweetest sad face, the doctors couldn't help but give in. Every four hours, the respiratory therapist adjusts his mask and never forgets to bring a very small cup of cold water with him.

Despite several attempt to wean him off the mask, Aaron's lungs cannot handle the decreased pressure settings. Aaron's lungs have significantly improved on X-ray and the doctors are pleased.
The problem lies with his kidneys.
He is barely peeing and has gained over ten pounds of fluid in two days. That is a lot for a 35 pound kid. The fluid is now what is hindering the lungs. Ugh!

Yesterday, he began daily three hour dialysis treatments. The dialysis can take the fluid off no problem. However, his current phoresis line can not handle the dialysis. Today he will have a new dialysis competent central line placed. Hopefully by tomorrow he will be in a better place and he can start to take off his bipap mask.

Although Aaron has peed (hallelujah), his kidney are in bad, bad shape. He only pees once a day. Aaron has bounced back from EVERYTHING (which is a whole lot of stuff) thrown at him in life. He can bounce back from this too. It will probably take weeks to months to years for his kidneys to heal.

Aaron has slept about 22 hours a day the last two days. My diet has consisted mostly of chocolate, a very bad coping mechanism. I try to justify it by exercising 1-2 hours a day. In between eating chocolate and exercising, I read or play brain games on my iPhone. Any suggestions for mind-bending apps? I am so annoyed with my free time. When I am home, I would kill to have an extra hour or two to get things done. Now I sit here stroking my son's hair and doing nothing else productive.

- Posted using BlogPress from my iPhone

Location:Cincinnati children's hospital

Thursday, October 16, 2014

He peed!!!!!

Aaron has made another comeback! He is one tough kid! Thanking God for giving me more time with my chef.

The doctors took him off dialysis at 9am. They were prepared to pull out the ventilator, but Aaron was sleeping. Patients who are sedated during extubation can forget to start breathing by themselves. We definitely don't need that to happen. So, we had to wait for Aaron to wake up.

For two days, this kid wouldn't settle down. He got so bad that the nurse restrained his arms last night while I was sleeping. She was afraid he would pull out his tubes. Finally, the big day came and he did not wake up until 12:30pm. The extubation went great. They put him on a bipap (similar to cpap) mask as an extra precaution. If he does well on this, he can get off the mask as early as later today.

After the procedure, I started to bundle him up. He pointed to his pull-up and sure enough HE PEED!!!! His kidneys are working. Not sure what kind of hit they received with this, but hopefully they will recover.

He is not happy about the bipap mask. He finally settled down by watching a 54 minute show called "Hamburger America Documentary." My baby is back!

Posted using BlogPress from my iPhone

Location:Erkenbrecher Ave,Cincinnati,United States

Monday, October 6, 2014

The events so far (short version)

Tuesday at school, Aaron was too tired to stay more than an hour. The rest of the day, he laid around very tired. At bedtime, he had a fever. Arnold Palmer did a chest X-ray and CT-scan to reveal pneumonia. He had already been started in antibiotics.

Thursday, he was medically flighted back to Cincinnati where his condition worsened dramatically. By Thursday night, he was intubated and we were told "his lungs couldn't get much worse." They went to max settings on the standard ventilator with little success. They changed to a stronger ventilator and that worked.

Friday, cultures were taken from his lungs. Usually, within 24-48 hours, the cultures suggest what type of infection we are dealing with. No such luck for us. Since antibiotics were started Tuesday, it is possible a bacterial infection was already undetectable. Fungus isn't ruled out since it can take up to two weeks (but they would still likely have some evidence at this time). Every virus that can be tested has been tested and is negative. Based on Aaron's presentation and culture results, the doctors believe he has a respiratory virus. There are hundreds to thousands (or more) viruses that we cannot test for. These unnamed viruses also have no treatment. The treatment is letting the IMMUNE SYSTEM fight it over time.

I don't have a choice but to believe Aaron can fight this. I lost all hope Thursday and told Michael to come back from work for Aaron's final days. Aaron has proven me wrong and we will continue to fight for our beautiful family! His vent settings have decreased from 100% oxygen to 50% the past few days. He is on dialysis to help his failing kidneys.

Aaron is sedated but only mildly. He can move his eyes and nod his head "yes" or shake it "no" to communicate. This is helpful. I offered to practice skip counting with him, but he quickly shook his head. He was more interested in cooking shows on the iPad. I will give in to him for awhile, but he won't get out if school for too long. :). My mother went to the bookstore yesterday to get some wonderful entertainment for him. We are looking forward to that. He enjoys reading his books about food and trains.

Your prayers and support, as always, have brought us through another storm. I wish I had the time and energy to thank each of you personally. Please don't stop the prayers! God is good and merciful. When people come together in prayer, He listens. I am proud of my son who has reached out to people across the world to come together to praise God!

- Posted using BlogPress from my iPhone


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"!!!!

- Posted using BlogPress from my iPhone

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

- Posted using BlogPress from my iPhone

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.

Sunday, July 20, 2014

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.


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.

- Posted using BlogPress from my iPhone

Sunday, June 29, 2014

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.

Posted using BlogPress from my iPhone

Monday, June 16, 2014

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:

- Posted using BlogPress from my iPhone

Thursday, May 29, 2014

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!!!

Posted using BlogPress from my iPhone

Location:Crescent Ave,Covington,United States

Sunday, May 11, 2014

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.

- Posted using BlogPress from my iPhone

Tuesday, April 22, 2014

April Showers

With all the "gloomy rainy" days we have had in April, May is sure to be full of the most beautiful "flowers."

Aaron's tummy is bigger than ever. He has thrown up several times lately after drinking. We believe this is because the pressure on his stomach from his enlarged intestines.

His mood has brought me to tears. For two weeks, his only method of communication is a tantrum. Asking him if he wants juice or water results in a total meltdown. When the nanny is here, he just stares out of the window all day.

Thankfully, his mood has improved this past week. I have been working hard with him. Timeouts, ignoring him, and lots of hugs. Being a parent really is tough work.

On a bright note, Aaron's schooling is going well. Our lessons are a bit inconsistent. We fit lessons in when we can. Aaron is starting to read simple words. He looks forward to earning his stars and getting rewards. Right now he always chooses to go to the pie shop.

Michael and I have decided to admit Aaron to the hospital and try gut rest. He will not be allowed to eat or drink for 48 hours. He will be on IV nutrition. Our doctor doesn't want to do this. She doesn't feel the results are very good and not worth starving a child. We feel that we have to try. Aaron's mobility and mood are being affected too much.

I would love any advice on how to entertain and soothe a child who is not allowed to eat for two days. I am dreading this, but praying it works. I am not strong when I see Aaron suffering.

I will end with some super, fantastic, over the top news. Aaron's skin is better than ever. It feels soft!!!! It doesn't look great, but I think his gvhd is starting to calm down.

Posted using BlogPress from my iPhone

Thursday, March 20, 2014

Looking good, feeling hopeful

Aaron's steroid was decreased over a month ago. He hasn't been able to stay at this dose before without flaring up. Over the past two weeks Aaron's skin has been getting better and better, his diarrhea has gotten better, and he has lost three pounds (a good thing).

I hope this is the turn for the better we have been waiting for. I am cautious with my optimism since things can change quickly.

I have been working hard to get Aaron's classroom and curriculum ready for next year. He turns five in October. Technically he would fall into pre-K, but I plan to begin him with kindergarten.

Michael and I came to the realization that he won't be going to school anytime soon. The earliest he would have a decent immune system would be another year. Even then, he will not be able to have vaccines for awhile. This trend of not vaccinating children and letting them into school systems is horrifying. We have come so far with medicine to eradicate diseases and now they are popping up again. Also, Serena is a healthy ten year old and is still sick almost once a month during the school year.

I do not plan on having a life of isolation for Aaron, but unfortunately we will have to be careful for awhile. I hope to put Aaron in group activities that I can monitor more easily for sick children. Maybe art classes, cooking classes, karate, etc. I would love some other ideas anyone might have.

Posted using BlogPress from my iPhone

Friday, March 7, 2014

Death of the sucker fish

We made another trip to Cincinnati. The drive was one of the easiest so far and NO SNOW!!! The weather is still cold but the sun is shining.

The first thing Aaron does when we arrive at the Ronald McDonald House is go to the fish tank and look for the sucker fish. We looked and looked and could not find it. Sometimes he hides behind the seaweed, but we asked Barbara anyway. Barbara said the sucker fish went to heaven. Every time we went by the fish tank Aaron would ask if the sucker fish came back yet. I tried explaining that the fish died, but I don't think Aaron understood. Barbara gave us a book to help.

This is the book given to families who lose a child while staying at RMH.

Our visit went well at the hospital. Aaron's electrolytes are better, but not normal. His liver numbers have increased to horrible levels. We will hold his antifungal medicine to see if that helps. His skin has improved with his photophoresis treatment. We are hoping he can stay stable and that we do not have to increase the steroid again.

Posted using BlogPress from my iPhone

Wednesday, February 26, 2014

Spoiled by Grandpa Gary

For the first time in his life, we left Aaron with someone else to care for him.  My father graciously took on the responsibility of caring for Aaron.

They had a great time together. Aaron showed him all his favorite YouTube cooking videos. They made pizza together everyday. They played trains and cooked with his play kitchen.

Aaron pulled a few four year old tricks on his Grandpa Gary. He told his grandfather what to eat for lunch (Giada's mashed potatos gratin). So my father followed the video and had potatoes for lunch. He told Grandpa Gary that he cannot walk up the stairs and was carried each time. He did not want to get a bath and went almost two days without one.

I think they both had a great time together. Aaron was very sad when his grandfather left and kept asking me when he will come back.

We caught up on some much needed rest, went sailing, and saw many local wildlife. We enjoyed taking pictures of the jumping fish, peacocks, alligator, manatee, and dolphins.

Sunday, February 16, 2014

Touched by three

There have been many people who have helped me survive the BMT journey, but three people have been of the utmost importance for Aaron.

Ms. Carole just might be the love of Aaron's life.  She is his photophoresis nurse.  Aaron loves going to the hospital because he gets to play with Ms. Carole.  When any other nurse takes her place, he is not shy to say 'I only like Ms. Carole!"  She is one of the most beautiful people we have ever met.  She loves Aaron and takes such good care of him.  They spend hours playing trains and watching youtube videos together.  Our lives have been much easier since Ms. Carole arrived. 

Aaron's love of cooking began with a youtube video of Spaghetti Carbonara by Steven Dolby.  Another reason Aaron loves the hospital is because he gets to watch the ipad.  When home, he wants to cook for hours in his pretend kitchen.  The hours of play cooking have been instrumental in improving his strength and stamina. Aaron begs for us to cook Steve's dishes.  They are delicious and surprisingly easy to follow (coming from someone who does not cook much).  I am forever grateful to Steve for being a huge part of Aaron's recovery.  I contacted him to thank him.  He was so moved by Aaron's story that he may dedicate a video to him.  Check out the recipes that Aaron watches all day long every day:   http://stevescooking.blogspot.com/

Finally a HUGE thank you to Philipp from Germany.  Philipp arranged and rearranged his schedule to donate his bone marrow to Aaron.  Aaron's bone marrow type is so rare that we could not find an exact match.  If it were not for Philipp, Aaron may not have been able to have a BMT at all.  The bag of red fluid is Philipp's bone marrow.  The picture of Aaron was taken while the bone marrow was being infused into him.  We hope to meet Philipp someday and thank him in person.  Because of Philipp, Aaron has a chance at a full life.

Monday, February 10, 2014

Update to the bump in the road

All your prayers and positivity hit us very hard this morning. I crawled into bed with Aaron at 5am. By 7am I awoke to several pokes and a loud "Mom get up! I want breakfast, let's cook the dogs breakfast. Mom get up!" And then more pokes.

We got up and Aaron was out of bed for a long time playing. He was lively, energetic, and happy. He did not eat or drink much, but that is only the first meal of the day.

Dr Davies came by and said Aaron is looking great. She was impressed by the valentines day dinner he had chosen for us to make. http://youtu.be/qExAmwHlGRA

She also said we will be inpatient awhile longer. His finger looks better this morning. However, the antibiotic is only IV. His finger must look completely healed and then we will treat a few days more.

So far he has thoroughly enjoyed today's activities. After breakfast, his favorite nurse, Ms Carole came by to do photophoresis. Music therapy also came by and he laughed like I have never seen with another adult.

YouTube Video

After seeing Joshua with his sword fighting yesterday, Aaron wanted to do the same. I ran to Target and got Aaron a sword. He loved it. He helped me make a Lego train. Then, we flipped through his new Pionneer Woman cookbook. Later today he will enjoy playing with his friends from OT and PT.

Thank you all for the uplifting every time we are in need. Each of you has helped with the healing of our whole family. Love you all!

Posted using BlogPress from my iPhone

Sunday, February 9, 2014

A bump in the road

Aaron has been stable for a long time. He has had slight ups and downs with his steroids and his gvhd flares, but no major hang ups. Until now.

Two weeks ago he stopped eating and drinking almost completely. He became more and more tired and wanted to rest most of the day.

We arrived in Cincinnati Wednesday for his monthly treatment only to learn that his electrolytes have plummeted. The doctors allow quite a bit of deviation from normal levels, but Aaron's became critical. They admitted him for a night since he would be hooked up to IVs all night and sent us back to RMH. Friday morning we returned to Day Hospital to find Aaron still is not holding his electrolytes. He also developed a nasty finger infection.

He is much better with eating drinking and energy. But... They gave him so much fluid his belly button is popping out. He is huge and having a hard time breathing. They gave him too much potassium and had to do an EKG to monitor his heart.

We are now waiting for Aaron's electrolytes to sort themselves out. He will go home on IV fluids for ten hours each night (even less sleep for me since he will pee even more all night). I am lucky to get four hours in a row of sleep, now it will be two. Ugh.

We just got word (while I am writing this post) that Aaron's finger has grown back as a pseuodomonas infection. They are changing antibiotics. Not sure yet how this will change things.

We plan to be discharged tomorrow to RMH and drive home Thursday. We are bummed that Aaron will miss out on his home school teacher who is awesome. I will also miss a lot of work.

With all that said, our spirits are good. We are the luckiest BMT family to have Dr Davies as our protective guardian. No one in this hospital is allowed to make a decision without her. Late last night a doctor wanted to give Aaron IV Lasix. I knew this was wrong. I sent Dr Davies a text message. She called the unit immediately and let then know again that NOTHING happens to Aaron without her approval. Did I mention she is the head of the entire BMT department!!!

Aaron has enjoyed sitting in bed a little too much. He requested we get him some cooking magazines. Here is a picture of him perusing.

We made him walk down the hall. He was not happy about that. However, he enjoyed watching his friend Joshua have a sword fight with his nurse. Aaron wanted to show Joshua his puppy dog. I see a lifelong friendship in the making.

Posted using BlogPress from my iPhone

Location:A bump in the road