Together Again

Today we picked up Daddy, Sis, Grandpa and Grandma at the airport. In Owen's words.. "this was a pretty great day!" We ended the nigh with a fun game of BUNCO at the RMH... beach bunco has never looked so good.  I won for biggest losses.. Kam won for something... and we had a fun time. 

We are all together, under one roof.  Look at this picture.. pure joy!!

Hope you all have a fabulous Labor Day Weekend!! 

Thursday Fun

Today started with a long morning walk and workout in the weight room.. it was a first time and Owen was my personal trainer. "Just four more mom.. you can do.. don't give up!"  Perfect motivator.  Then we got ready and headed to Kindergarten at the hospital.  Just an hour into class, I overheard Owen and his friend Kenzie both say in unison.. "we're ready to go... we are tired."  Ha.  They were totally ready to walk out of there until their teacher convinced them to stay for the last hour of class.  His favorite part of the day was playing cash register and counting money. 

We left just in time to make it to GI clinic.  The NP worked some magic and snuck us in to take a quick peek at his gtube.  It's been loose, but she thinks it looks great, so no worries there.  We had about 30 minutes to eat lunch at the RMH and head out for Physical Therapy.  Owen was stubborn and we pushed him.  His PT was working on stretching his hamstrings.. he can only bend his leg back about 90 degrees, where the rest of us can grab our ankle and pull it to our bum.  So we were given some home work to stretch, as well as keep him moving and having him work on stretching out his calves.  He is just so tight. 

We had yet another appointment with speech therapy an hour after that, then we made it back to the RMH in time for dinner.  A mighty fine dinner too.. wow.. so good.  Food always tastes so much better when you don't have to cook it, don't have to do the dishes afterwards, and it's free!  Thank you to all the volunteers that come into the RMH and provide such amazing service.

After dinner, Owen ran around the family area with the other kids, and he had such a great time.  Tonight was craft night and Owen was sure to use as few beads as possible and get it done as quick as he could. :)

We are finally back in our room and we are getting all our laundry done now.  Owen has been having major giggle fits lately.. he just cracks up and can't stop laughing.  It's totally contagious.  At dinner, everyone tries to make Owen laugh because it is so funny when he gets going.  It's wonderful that he turns bright pink instead of dark purple.

Tomorrow Daddy, Sis, Grandpa Todd and Grandma Monica come into town in the morning.  Owen and I are super excited to see everyone!  We have a fun week planned.  We aren't allowed to go far from Palo Alto and we have to avoid the crowds... so we will get creative.  There are some cool hiking trails I really want to explore and I have heard that Stanford campus is gorgeous, I'd love to just walk around.  We have no appointments at all this weekend... so excited for a break!

Do you all have fun plans for the holiday weekend??

A Normal Day

First of all... Owen got another ZERO on his biopsy from yesterday!  That means zero cellular rejection, which is wonderful!  We are very happy.  :)  We are still waiting to get the test results back on the staining of the sample for the AMR (antibody mediated rejection).  They did see some on his past biopsy samples which has me totally nervous, but there is really nothing we can do at this point.  We are already doing monthly IVIG and hopefully that will continue to decrease the antibody numbers and the AMR isn't causing damage yet.  I just hope it doesn't get to a point where we need to use Plasmapheresis or further intervention (chemo) on the antibodies. 

Owen had an emotional night last night.  Lots of tears, missing home, wondering when the constant pokes and surgeries will end.  This morning he had an eye appointment scheduled with the ophthalmologist to check the blood vessel that burst in his left eye.  I rescheduled it and was thrilled to tell him we were NOT going to the hospital today.  We were going to have a 'normal' day.  Then he said.. "well if we aren't going to my eye appointment, then we get to go to KINDERGARTEN!!!"  Too bad it just so happens to be inside the hospital.. sigh.  He was so happy to go and had a great time.

Afterwards, we were on a mission to find a car wash that didn't cost an arm and a leg.  I finally found one... they have the drive ins, you get out and do it yourself... pull forward to vacuum and dry your car.  Perfect and it was less than $5.  Then we headed to Costco for a couple things. 

I was thrilled to see the elevator at the RMH was back in service.  That was not fun making several trips up and down.  Owen and I played his new Lego Pyramid game... bingo winnings from last night!  We also got back to the RMH in time to sign Owen up for his weekly Reiki massage, which he totally loves!!  He was totally relaxed and enjoyed his hour long massage. 

Tonight is a cooking class at the RMH for the kids.  I'll take pictures with my real camera and not just the ipad one.  On a totally random note... this display always creeps me out.  It's in the basement of the children's hospital, just after you get off the elevator.  When Owen was in ICU there was no restroom for the parent's to use on the unit and so I would run down to the basement to use the one next to the cafeteria.  It's fine unless it's midnight, the halls are empty and you see this....

Until tomorrow...