Hello April.

How is it already April?  I wish I had some great April Fools trick, but I am not a good trickster.  Owen got another ZERO rejection score on his biopsy this week.  His IVIG infusion went great and we were discharged about 4am on Wednesday morning.  We celebrated with spicy chicken wings at KFC and Owen was thrilled.  During his biopsy, the anesthesiologist pulled his four wiggly teeth.  I was so thrilled and the tooth fairy paid up.  This money is burning a hole in Owen's pocket!  

Owen's clinic visit and echo on Friday went well.  His echo look totally normal, which is incredible!  We started to wean his steroids but it's a slow wean over several months.  I planted the seed about a date that we can head home, but no promises yet.  I'm crossing my fingers it'll be the end of the month.  We have a busy April full of appointments.

Owen has another biopsy on Tuesday and they will do some work on his SVC as well.  Other than that, we have a quiet week ahead of us since it's Spring Break around here.  For tonight.. we will party.. fancy style.

Owen has gained about 3lbs in the past three weeks and those cheeks are adorable from the steroids.  I can't wait to see him grow and gain in the upcoming months.  We couldn't be happier!  

Back home...

The kids went to the Zoo with Tate, Larissa and Rustyn.  Logan loved all the attention and I'm pretty sure it took all four of them to keep up with his energy.  He loved the carousel so much and kept saying 'up and down" and would be sad when it ended.  I am missing out on so much, but I am grateful he is so loved at home.

We are counting down the days until Easter weekend when the family comes up to visit!  We miss them all so much!  

Biopsy #2

Biopsy number two went great.  Owen had a great time in pre op and we headed back to the cath lab around 11am.  It didn't take too long and he was back in the PACU recovering and asking for food.  Dr Peng drew me some pictures showing his femoral access failing.  His right femoral artery has lost all access and his left femoral artery is narrowing.  He should have great access through his neck which is how they access older kids and adults for caths anyway.  She was going to talk to the team and see about decreasing the amount of biopsies Owen will need to undergo, which deviates from their protocol.  Owen did great and his pressures are fantastic!!  It's unusual to have pressures this great so close to transplant.  The second issue was the narrowing of his SVC.  He has had a stent in there since the first transplant and I thought the transplant surgeon said he patched it and removed the stent... but it's still there.  Maybe he just cracked it?  Regardless, the team will discuss it with him and they will do a balloon dilation in the cath lab next week when they access him through his neck. 
Owen woke up hungry and ate a ton of food.  He's still snacking.  We headed up to the SSU (short stay unit) and we will start his 12 hour IVIG infusion soon.  We just pre-medicated him and then we will get him hooked up.  It's going to be a long night and we should be discharged around 4am.  We may just sleep until noon tomorrow.  

Another week down and we are super thrilled with Owen's progress!!  We should have biopsy results by tomorrow morning sometime.

First Weekend Outpatient

Our first weekend outpatient did not disappoint.  We relaxed and enjoyed the amazing weather.  Owen needed some workout clothes for physical therapy and we hit Target.  I can't tell you the last time I was in Target and it was so hard to not shop around.  We were in and out.  Doesn't he look ready to pump up those muscles?!  Owen had his PT eval today and we were given exercises to do during the week and will followup a few days a week for a while.

It was nice to have a three day break from labs, but we were back at it first thing this morning.  So grateful that he is an easy stick and he is so brave.  It wasn't always this easy.]

Owen has been ravenous!!  He is wanting foods he hasn't eating in forever.  He still has a small appetite and only eats a minimal amount, but the variety is getting better.  He has been asking for Olive Garden breadsticks for the longest time.  We finally made the 30 min trek across the bridge to Freemont for some Olive Garden take out.  

He has been eating an actual breakfast which he hasn't done in at least a year.  A few bites of each thing and a sip or two of orange juice, but he's doing it.  I'm trying to not get too excited because I know once we wean these steroids down a bit, the appetite will wean as well.  I'm going to enjoy it while it lasts.

As you can see, our weekend was filled with normal activities.  It feels so good!!!  Tomorrow is Owen's 2 week biopsy, followed by a long IVIG infusion.  Praying for zero complications and zero rejection to continue.

Back home...

Logi has a new love for Peppa Pig.  Soon he'll start talking to us in a British accent.  I found George and Peppa at the hospital gift shop and was so excited to send them home with Carson last week.  Logi loves them!

My boys are quite opposite.  Logi loves to build and doesn't like it when they fall over.  Owen used to hate building and would look forward to destroying things.  Logi is super independent and Owen still likes us to do everything for him.  Logi doesn't mind being a little Messy and loves to get wet.. Owen does not.  Love these boys of ours.