Summer in review (part two)

I was fortunate to make it to Spokane, WA for my sister's surprise birthday party.  We had massages, spent time with her beautiful family, and drove to Portland to visit some of her friends.  The weather was beautiful and she was delighted to bring her Porsche out of the garage and drive with the top down for the road trip.  I miss her tons and wish we lived a lot closer.

My brother and his family took a two week vacation and I am super thankful they decided to go to Disney World.  Living in Orlando often means family comes to me.  I can't even remember how long it has been since I have seen Craig and Katie.  We had lunch at the NBA restaurant and afterwards the kids got soaked running around in the water.   Serena enjoyed having three friends listen to her talk and talk and talk. 

With major reluctance, we took Aaron to the community swing set.  Aaron's doctor said it was time to start getting Aaron out of the house a bit and take him to the park.  We went at eight in the morning.  He was loaded up with sunscreen, UV clothing, a hoodie, and his wide rimmed hat.  I was still scared to death.  We stayed outside for maybe 15 minutes.  Aaron really did not have that much fun.  UV light is deadly to him and we have to limit his exposure.  Next time we will try a park with more activities and maybe earlier in the morning.

Summer in review (part one)

Summer was fantastic!  Serena was here, we had no hospitalizations, and I got to see my brother and sister.

We threw cousin Aidan a small birthday bash.  Technically his birthday was not this summer, but I am really behind in blogging.  We were fortunate to see Aidan three times this summer.  Aaron is slowly warming up to his "best friend."  I am hoping to have more frequent play dates.  Aidan is the only approved friend the doctors will allow.  We are thankful because he is adorable.

Serena spent the summer with us which always makes life more fun.  She is never without a good story (which often never ends) and so much creativity.  She had a blast with the nannies.  She even put on plays for me when I got home from work.  My favorite moment was one night when she needed to go downstairs to get her stuffed toy.  I was busy and couldn't go down with her.  She is deathly afraid the ghosts are going to come out of the walls and get her.  She armed herself with a flashlight and a baseball bat.  I wish I had a picture. 

Michael was a race car driver for a day at the Walt Disney World of Racing.  He even had to enter the car through the window.  He loved it!

Serena played her violin in a concert and had an excellent performance.  Her daddy also plays the violin and they are both very talented.  A few weeks later she performed a monologue in a theater performance.  This little girl has endless talent.  She also has many goals in life.  Lately she wants to be a professional soccer player and publish children's stories.

Aaron's cooking interests have taken off this summer!  He has gone from playing with his food toys to discovering recipes that he insists I make.  He finds the recipes himself.  His inspirations come from youtube, his books we read and looking through my cookbooks.  Everything he has picked out has turned out well including the Creamed Chicken with Peas on Toast.  I only wish he would eat the things we make.  He does not like to eat.
 

We still travel to Cincinnati regularly for Aaron's treatments.  We were going every three weeks and this month we are trying to go every four weeks.  Having Serena come with us is a blessing.  Everything is better when that girl is around!  The drive was easier with both kids in the back seat and I got to listen to my audiobooks. 

Aaron's health remains unchanged.  We will never lose hope that someday we will win this battle and announce to the world that Aaron has been cured!

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.