Our first sunny day at Volunteer Park and Conservatory

It was such a beautiful day and since we had yet to have a day without rain we decided to get outdoors.  After a little online research of Seattle parks we found the Volunteer Park and Conservatory. We started at the conservatory which was so beautiful.  We decided to chooses some of our favorite flowers.

Haye liked this one because of the color.

Brent thought that this one looked like alien pods.

This one was fun because the petals are really the leaves just a different color.

This one was Kaitlin's favorite because the hanging flower part is fuzzy.

Aiden picked this one. 

This one was my favorite because the smell was amazing. They had the orchid section right as you walk in so you walk into all this green humidity that smells of orchids. 

There were these great trees at the park just made for climbing with the trunks split in several different directions.  Wish Jen was here with her camera.  Such great photo ops just itching for something better than a phone camera :)

There was also a large pond with fish - the kind that freeze and hibernate in the winter and thaw and go on with their lives in the Spring.  I can't remember the name of them for the life of me but...they were huge. 

There was also a water tower that they have converted into a look out point that has great views and information about Seattle.  Haye and I decided we needed a little exercise so we went up and down the stairs 4 times in a row as fast as we can.  I guess it says a little about how out of shape I am that I was sore for about 3 days after.  sad sad sad.

We stopped and had pizza at a local joint on the way home.  All in all it was a great day and so nice to get outside and play!

Tests, blood draws, and more tests!

Lest you think all we do is play...we are at the SCCA or Seattle Children's Hospital  almost daily for something and Aiden is a trooper!  So patient with all the doctors and tests and owie pokes.  Way more patient that Brent or I, he is truly an example of patience and long suffering (maybe some of that will rub off on me).

Chillin' through the EKG!  Everything looks good.

 His gamma globulin were low so they had to give him an infusion.  There is a story that goes along with this that will remain untold to save keep Brent's PTSD from flaring up.  Getting a boost of IVIG is a good thing cause it helps him fight infection.

 This is one of the many blood draws that Aiden was having!  He is so brave and has all of the phlebotomists wrapped around his little finger.  Every time he goes in he comes home with several new toys.  We love Bull (a phlebotomist) cause he always gets it on the first try and is really quick!  The one necessity is the blue blanket (Blue) and as Aiden says "Blue helps me be brave". 

He was put under once to do a bone marrow aspirate.  This is post procedure - totally passed out.  It took him a min to wake up cause he just wanted to nap.  It was obviously a rough (and early) morning.  He did spectacularly and while some people complain of soreness or pain, we went on as usual. 

He has also had a couple chest x-rays and met multitudes of docs for clinic appts and base-line exams (CDC, eye exam, dentist, immunologist, SCCA docs, Bone Marrow docs, nutritionists, pharmacists, and so on and on and on).  Things are looking good.  There have been a couple of bumps that we are in the process of resolving.  One new and interesting development is that his donor cells from the first transplant have been increasing 8% to 14% to 22% at the most recent tests.  While this is potentially a good thing, the T-reg cells (the ones we need to cure the disease) are all his own.  They have taken more blood to do a retest of the T-regs.   We have stumped the docs!  Way to go Aiden.  More info forthcoming.

Hunger Games Party!

 We love the bookstore and found a Barnes and Noble that was fairly close at the Northtown Mall (about 5 miles from the RMH to the North).  First we had to gas up!  OUCH! and prices are still rising ($4.25 right now).

 When we got to Barnes and Noble they were having a Hunger Games party.  They had hair stylists, make-up artists and costumers to make us look like the Hunger Games characters - then of course there was the photo shoot! 

 They also had treats and goody bags with Hunger Games paraphernalia.  We ended up being there a lot longer than we expected and Brent was thrilled that he was again nominated to watch Aiden in the kiddy section while we got all dressed up!  He got 2 new books though so he didn't complain too much.

So fun and I usually don't go for stuff like this! Fortunate timing!

Dinner with the Fire Fighters!

 About a block up the street is the local Firehouse and every month the RMH invites the Firemen to come and have dinner and socialize.  One of the really fun things is that they bring the fire truck!  They even had the lights going.  Aiden ended up pushing a bunch of buttons and releasing the brakes ( of course).  All the firemen jumped forward so fast you would have thought there was a fire (ha ha ha - yes lame but appropriate).

Hailey got a lesson on how all the hoses and levers work.

 And KP thought she was funny cause in this picture it looks like she is getting run over and her "hair" is on fire.

SO THERE!!

Ballet Excursion: Snow White

The Ronald McDonald House often gets tickets to local events and attractions. We were able to use the tickets they got to the Northwest Pacific Ballet's showing of Snow White. Just the girls went as Aiden (and Brent) probably wouldn't sit through it!

We ended up with great seats and had a lot of fun, even walking back to where our car was parked through the pouring rain. By the time we got to the car we were all soaked and mostly purple. Luckily our car heats up really fast!

A Trip to the Supermall

Our weekdays are pretty full of doctor appointments, blood draws, chest x-rays, EKG's and whatever other tests you can think of but we like to find fun things to do on the weekends when we don't have to drive int he RIDICULOUS traffic!

This is one fun thing we found. A great big discount mall with a Carousel and since cotton candy was on sale, we had to get some of that too! I got spoiled with a 20 min massage.

This mall ended up being about 45 minutes away which isn't bad as you pretty much have to drive at least 20 min to get anywhere you are going.

After Dinner Activities

On most nights groups and organizations come in and make dinner. A lot of times another group comes in and does art, dance, or craft activities for the kids. Dinner and entertainment - what more could you ask for?!