Little chatterbox

This is a longgggg overdue post. Sorry to those that have supported us along the way and I have left you hanging.

We tried another steroid wean without success and had to go right back up on the meds. That was disappointing, but we are still plugging along. He still has zero immune system and is still just as fragile as ever. We are expecting at least another year and a half before we have any hopes of him entering society in a normal way.

However, there is some good news. Aaron has become quite the talker. I have a feeling his sister has rubbed off on him. Serena has been staying with us this summer and I have never met anyone who can talk and talk the way she does. They have also done a lot of laughing lately which makes me happy.  

Aaron has had the norovirus now for about six months. Without an immune system he has no way to fight it and there is no medicine to help. The doctors have tried an experimental treatment with breast milk supplementation. With only one glass a day (loaded up with strawberry syrup), he has gone from pooping every two hours to only three times a day. This means we are all getting more sleep at night. Yay!!!!

Aaron has lost about six pounds and looks great. His skin looks better than it has in a long while.

We are also enjoying Serena's company. She is a beautiful, fun, and talented little girl.   She enjoyed a week of VBS, had her acting monologue performance, and played her violin in a concert. She is looking forward to soccer starting again soon. She is one of the star performers.

We even got to have another visit with cousin Aidan. We love when he gets to visit.

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Don't eat my cupcake!

We just got back from another three days in Cincinnati.  Aaron has been doing so well with his steroid wean until now.  GVHD is spreading over most of his body.  He is also having signs of gut GVHD.  We had to go back up on steroids again.  Even with the increased steroid, his skin is getting worse.  The doctor also said that Aaron will have to keep coming every three weeks (we were suppose to start going every four weeks now).

I really don't know what will happen now.  The doctor will have to come up with a new plan.  They say GVHD will burn out in five years in most people.  I was hoping we wouldn't have to wait that long.  Until Aaron can get passed GVHD, he cannot get his new immune system.  I am trying to stay positive, but it is really hard.

One day during his photophoresis, Aaron asked me to order him a cupcake and then he fell asleep.  I completely forgot to order the cupcake.  When he woke up it was time to leave the hospital.  I felt bad.  We had to leave our room since they needed it for the next patient.  However, I ordered the cupcake and we waited near the clinic until it came.  The doctor kept teasing Aaron that he was going to eat his cupcake.  Aaron was mad!!!  He yelled at the doctor, "don't eat my cupcake."  When someone says hi to him, he usually yells, "don't say hi to me."  However, the rest of that day when someone said hi, he yelled "don't eat my cupcake!"

Sailing

Sailing


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Photo is working!!!!

Aaron is doing amazing! I couldn't be happier. We have weaned really low on Aaron's steroid with no gvhd complications. Last time when he got this low on steroids, Aaron was so bad off he ended up being air flighted from hospital to hospital. He should be off the steroid in a month. This is the biggest milestone we will hit post transplant. Starting in May, we will be going to Cincy only once a month. Thank you Marsha for being the reason we are getting photo and doing great.

He still has norovirus which causes him (and me) to still be up all night with trips to the potty. Since he still has zero immune system, he can't fight this off. He has had it for three months now. He also still has the huge tummy that is not getting better. Hoping this resolves itself soon. His energy level is great, but his tummy gets in the way of his progress. He could benefit from PT and OT, but we haven't been able to work that in our schedule yet.

We have been enjoying life. My sister came for a visit over Easter and we all went to the coast. Michael is interested in sailing. We found a super cool sailing instructor for him that guarantees he will be on his own in the water after an hour.

Serena has visited numerous times. She is always a delight. We can't get enough of her and look forward to her staying with us for the summer.




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Shaking his tailfeathers

Aaron was excited for Mom to get home.  He was having a good time with Tabi, his nanny.  This video made my day, my week, my month, my life!!!!  Times like this remind me that this was all worth it.  Glad Aaron has made it so far and brings a smile to those who know him.

A Good Trip to Cincy

Finally we had a trip to Cincinnati without any problems. Aaron's treatment went well and he spent a lot of time with his favorite nurse Carol.

We found out Aaron's belly problem is pneumotosis. Gas is trapped in the walls of the intestines. They will not treat him and it should go away on its own in a few weeks or months. We just hope the gas bubbles don't burst or else we would have a huge problem (sepsis).

My heart was lifted higher than ever Tuesday evening. My BMT Mom friend, Kasi, was also at the RMH with her son Kohen. The boys were transplanted a couple of weeks apart. Aaron saw Kohen and smiled and laughed. They compared what was on their clothes (Aaron had a train shirt he was showing off and Elmo pants). Then Aaron chased Kohen around the RMH. He referred to Kohen as his little friend. This is Aaron's first friend and playmate besides his sister and cousin. This is also the first time he has seen a child without screaming at him.



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We made it

I had no doubt we would find a way to get to Cincinnati.  I can't think of anything that would stop me from getting Aaron his treatment.  However, I didn't know how we would make it...

My car has been in the shop three times in the last week for three different issues.  I feel like every time you bring a car to be fixed, you end up with another problem (or two or three).  Friday my car gave me trouble again and the mechanic said I needed a new computer and the closest one available was in California.  There was no way they could fix the car for awhile.  I tried so hard to be strong, but I broke down in front of the mechanic.  We were supposed to leave the next morning to drive to Cincinnati.  The mechanic was so sweet and even offered to drive me home, but that didn't help with getting Aaron to Cincy.

Michael and I looked at all options including renting a car and buying a car.  We finally settled on buying a cover for the bed of Mike's truck and taking our chances with his clutch that needed to be replaced two years ago.

We made it!!!!!  Aaron will get his treatment and I pray we make it home safe.

Aaron's gvhd has been great.  Slight flares and gone the next day.  His bigger issue right now is that his belly is so swollen, he looks like a he is carrying a basketball under his shirt.   I am a bit concerned and have emailed the doctor.  I am anxious to get to the doctor tomorrow.  As always, his spirits are great and he is a perfect sweetheart.  Barely made a fuss the whole ride up.  His only complaint was that he doesn't like when Mom drives because he wants Mom to sit in the back with him.