Mar 29, 2011

City Girls

Nat came into town.  She bought her plane ticket before we found out that we would be moving.  We'll take her anytime!  EVEN if we will live close to her in a month and some change. 

I decided that I needed to go visit "the needle" before leaving this state.  I have lived here for almost 7 years and I have never been to the top.  JB never wanted to take me because he had previously boycotted the place due to a "bad experience" eating at the restaurant way back when.  Soooo- I will take my sister who doesn't have a bad attitude :-) is unscathed by the space needle.  I asked this guy who was there taking pictures to snap this one of us. I said, "can you just barely put us in the shot and mostly get the buildings in the background?"  Didn't he do a good job? ;-)

While we were in the gift shop we spotted the most delicious noodles known to man... the SPACE NOODLE!!! This is my aunt's company and we couldn't resist taking a bunch of pictures with her noodles.  And now, a narrative:

Oh look Lan, this shelf is nearly empty... you must send more noodles! more noodles! more noodles NOW!

Hey! That is the last bag of space noodles, and I had them first!

Oh no you didn't, I'm out of here!  Not so fast noodle stealer!  

the end.

Yes, we asked another unsuspecting tourist to take pictures of our shenanigans.  We like to have fun, and don't mind getting others involved.  Lani, I hope you liked our awesome narrative.

At the experience music project I saw this poster which would have normally meant nothing to me, but this is exactly what my dad calls Sam.  "Sam the Sham and the Pharaohs."  Not just "Sam the Sham," the entire thing.  My dad should get paid for his nicknaming! His nicknaming was definitely inherited by his daughters.

It was beautiful at the top!  On the ride up, I got a little scared. Not gonna lie.   Funny thing about elevators... when they are glass on one side and you can see how high you are going up- it is completely different from riding one in a building.

Speaking of buildings. The City truly is beautiful.  The surrounding water definitely adds to its beauty. I do love the city, but will NOT miss driving to it all the time.  I have been driving up once a week for Mia's apts, and could use a stretch without seeing Seattle.

This building made for a lot of fun picture taking.  I will spare you from the 30 I took. 

I do love this one though!  

When I was taking this picture, a child on roller blades did NOT see me standing there.  Jense currently spends 6-7 hours a day on roller blades so I know how quickly control can fly out the window.

Good Bye Space Needle! You were everything I hoped you would be!  Some day I will bring my children back to meet you.   Am I talking to the space needle? 

Mar 22, 2011

Messes right and left

Moving... or the anticipation of moving is pretty much taking over my life. I have sold quite a few things, but still need to get rid of so many things. Then, try and find someone to rent my house.

Ohhhhh. Big sigh! Someone please give give me a bibbidi bobbidi boo wand so I can wave it and have things organized and in labeled boxes.

Things are a mess around here to say the least. Sam and Mia are not helping one bit! Remember a few posts back when Jensen got to pick out his own "fancy" box of cereal? Well, Mia climbed up and got it down and gifted it to Sam.

It was a lovely surprised to walk down stairs to Sammer swimming in cereal. If you know Sam, you know that he is a thrasher... and it didn't take long for him to get that cereal out of the bag. He also eats non stop.



Here is a little video of my little mess makers. Good thing I can't get enough of them! My favorite thing about Mia's sharing of the cereal is how she also brought Sam a fork to eat it with. Soooo helpful!

Mar 13, 2011

"You're Melcome"


We are home now. Mia did great!


She had two rounds of IVIG treatments and IV steroids, now we are on the same schedule as before weaning her from the steroids. Now we just wait another month and when she is off the steroids, they will repeat a biopsy. Ugh!  THIS time it will be back at zero.


While we were there, she enjoyed the playroom.  I wasn't going to take her, but we were there stuck in that room and she needed an outlet.  She sure had fun, and played a lot of bowling. Her favorite thing though, was the bubbles. She could play bubbles all day long! 


Mia was such a crack up in the hospital.  She keeps mixing up "Thank you" and "You're welcome."  She caught a few people off guard when she would loudly proclaim "You're Melcome!!" after the following scenerios.  

- after the cardiologist listened to her heart
-after the nurse would bring her juice/milk/snacks
-after walking out of an elevator leaving people inside
-after she would give me a hug or kiss
-after going potty in the potty chair
-after allowing her blood pressure to be taken
-after a volunteer brought her some toys/books

"You're Melcome" was definitely the theme for the hospital stay.  It was hilarious. Some times she would even repeat it a few times in a row- just to reinforce.  She made quite a few people laugh...with her, "you're welcome for being allowed to serve me today" attitude.  I think everyone knew she meant "thank you," but I wasn't about to correct her, I was too busy laughing.


The hospital is a wonderful place, but it is so good to be home!  When we are there it is easy for me to be reminded of all the pain.  A new friend of mine is waiting for her baby girl to receive an angel heart.  When I read her thoughts it takes me right back to our desperation.  Even though Mia is experiencing... I mean was experiencing rejection, we have come so far!  If you need someone to pray for tonight, please pray for her family.

Mar 10, 2011

You will NEVER believe this...

I am pregnant!  JUST KIDDING.  I prefaced the following news to my friends with, "You will never believe this" and the three people I told ALL thought I was pregnant.  

Not Pregnant, but we are making a major change--- MAJOR change.  

Are you ready?  

We're MOVING back to UTAH!!! 

John boy got accepted into a program at the University of Utah.  
My head is spinning.  We found out the day before I brought Mia in the hospital.  I am so proud of him!  We are going to be selling all of our earthly possessions and moving in with my parents.  Yes, my parents... that's how we roll.  In a few months I will officially be 30 years old and moving back in with my parents.  Saweeeet!

There are so many exciting things about this, and so many sad things.  I am already missing my life here and know it will be a huge adjustment for our entire family.  

Jensen's first reaction was: "What about my rockets?"  (we painted rockets on his walls)
Then he said... "Mom, what about all of your friends?"  (he is the sweetest kid)

Ellie said: "Yay, now I get to live by Abby" This is exciting, but I don't think she realizes all of the cousins she will be moving away from. She also thought we were moving that day and told all of her friends at school we were moving to "Seattle" and she wouldn't be back.  When I explained that it won't be for awhile, she started to cry and was extremely worried that her friends wouldn't like her because they thought she lied.  poor girl.  Totally mis-understood the time line and already said her farewells. Hopefully school went OK, I wasn't there to find out how the surprise I'm not moving yet went over.

Mia doesn't understand what that news entails, but we will have to transfer her care, and that is more than stressing me out.  I have heard that the transplant team in Utah is great, and I'm sure they are.  So much to do!  I just wish we weren't facing rejection during this transition. 

Sam, well, he slept through the news- cause he is always sleeping.  John told me that Sam slept from 4 pm- to 8:30 am last night.  That is  a lot of sleep!  He has done this a few times, but it is too long in my book. I miss his little face terribly! He is a momma's boy and it is breaking me up not snuggling him each day.  I started crying watching a trailer for Dumbo- that show is NOT intended for mommies who are separated from their babies.

John is excited- as we were talking about everything we are planning to take with us, he only had one thing on his list.  The big screen. That was first on my list to sell- he he. I guess if he only has one...

Yep, there you have it- Utah, here we come.


In "other" news.  Mia has had a good day.  She had her second round of steroids today and slept through much of her IVIG treatment in the night (which is miraculous because they take vitals every 15 minutes).  The doctors did say that it is a possibility that after her last IVIG treatment we could just hit the road. Crossing my fingers for this.  
Back to Moving... Can you believe this?? AAAhhhhhhh!

Mar 8, 2011

4 night stay in the hotel for sick kids


Mia is currently admitted at the hospital- this is her "oh wow!" face.  Yesterday we got the call that we would need to come in for FOUR days so she could be treated with steroids and IVIG treatments and some added immuno-supressants. 


Mia's immune cell function levels came back at 757- which is way too high functioning for someone with a transplanted heart.  Her level two months ago was 131.  It seems that the last round of steroids only boosted her immune system- and kept her in rejection.  strange.


Today when she got the IV they had to try three times to get it in.  I'm pretty sure no parents should have to participate in this- it was traumatizing! For her and me. You would think I would be used to it. I'm not. It is sad, and because she is so sweet I feel even more guilty for bringing her in for all these "owieeeees."


When the IV was finally put in I was so relieved. Now, Mia won't stop talking about it getting "off." She keeps telling me, "All done owie."  It's going to be a fantastic four days trying to convince her that the blue board taped to her arm isn't going anywhere.


Here is little "Maya"(again, never thought so many people would call her that) innocently sitting on her potty chair earlier this week.  Poor thing just wants to be an at home potty training sassy senorita. 


She is loving the potty chair and kicked it up a notch when we got to the hospital today.  The nurses said that after her steroid treatment she might act crazy.  Let's just say after they brought in a potty chair she has been a potty training maniac. literally running around the room and taking breaks to sit and "try." The most amusing thing about her marathon potty time is how during her lap around the room she will yell, "coming paee chere." Then, after she sits for awhile she will jump up with both her arms straining high above her head and she'll yell... "TA DAH!!!" Then run some more! I am kicking myself that I didn't bring the video camera.  She is killing me!

I have a feeling that we won't be going to bed for awhile because she is extremely energetic.  It is now 9:30 and she is usually in bed by 7:00, and showing no signs of stopping. Currently she is playing tag with my parent badge.  She tosses it across the room then yells, "come get me!" Then gasps like someone is chasing her.  Then she picks it up and starts all over again.  This is like play time... on steroids. (hardy har har)

Mar 7, 2011

Holding Pattern


I know some of you have been waiting for some news.  
I don't have much in the way of "answers" but there are a few tidbits I received from the doctors this week.  

Mia's biopsy results came back at a 2R (moderate)

That means she didn't get better, but we're thinking she didn't get worse.  Remember last time they thought she was a 1R, but after the doctor looked he decided it was a 2R?

They sent off the tiny pieces they took of her heart during biopsy to the University of Washington.  We'll see if something comes back different.

Last week they ran some more blood work to see if the herpes virus could possibly be hanging on still and causing problems, and also to test her immune cell function.  

Herpes came back negative, and her immune cell function is too high.... meaning she is not suppressed enough- AGAIN!  They didn't go up on her drug level yet.  I think they just want to get the rest of the results back and make a plan.  She is showing no signs of rejection and her BNP and CBC and all other levels are great! so everyone is scratching their heads.  

We will go in on Wednesday and hopefully make another plan.  I don't know if it will be another round of steroids... or IV steroids- I have no idea.  I am taking all of my questions with me on Wednesday, and hopefully we can get this girl back where she needs to be. 

She is sure happy and polite!
She spends the day bringing me things and loudly announcing: "Thank You!" "You're Welcome!" over and over again.  Her little voice saying "you're welcome" is about the sweetest thing I have ever heard.  She even said, "thank you" after her last blood draw- AND it was take two for her labs.  Yes, they forgot to draw one tube so we had to go back and get another poke five minutes later. Poor girl.  I am learning so much from this peanut!


Mar 2, 2011

Making a Splash

This guy is 11 months old today
And he is making quite the SPLASH!
I know I just posted far too many pictures of this face

But... can you blame me?

He is so much fun!

He loves the tub

and splashes like a maniac 

every time he gets in the water

His sister doesn't seem to mind

Some times she says woah Sam... and some times it comes out "Tam"
and if you're lucky sometimes she calls him "Tammy."


Oh, and he finally started saying, "Mama"

Mar 1, 2011

I am rejecting the news about rejection

I got a call today letting me know that Mia was still in rejection, but we wouldn't be given a number or any other information until tomorrow.  The doctors and pathologists need to get together.  They will call me tomorrow afternoon. 

Is there an option where I can reject the rejection?  Object? project? any word really except reject?

I am still planning on good news tomorrow, but I did consume a healthy portion, and when i say healthy we're talking a solid 1/5th of one of the All American Chocolate cakes from the Costco bakery.  It was good.



The icing on the cake to my "stellar" (insert sarcasm here) day was when I picked up two broken hearted kids from school today who did not make the school play.  Jense said, "mom, I didn't get a part" in the most pitiful sad voice ever!  My heart was broken for a second time in one hour.  Ellie was sad too, and asked me why they didn't pick her.  She quickly recovered with the prospect of going to a cousins house.  Watching my children feel rejected was awful. We talked a lot about it on the way home, and I think my consoling them somehow convinced myself of the same lessons.  

Parenting is hard!  Rejection is hard!- both for transplanted organs and not getting picked for the play. It is so difficult for me to see their sad faces, but disappointment is part of life...and it makes us stronger.  Mia doesn't know she is in rejection and doesn't have a care in the world, but I am so disappointed.  Can I opt out of the adult role for awhile? or at least today? If my parents could have seen my face when I heard the news about Mia I am sure they would have felt the same way I did as the parent of my kids getting bad news.  I am new at this. My kids have never been turned away from an experience, but I suppose I have been a parent of a girl in rejection for a few months now.  After raising 6 girls, and witnessing their disappointments, my parents somehow made it out alive- and I'm sure I will too.  I'm just such a softy.     

After Ellie left to her cousins Jense and I went on a mommy/Jensen date.  We actually just went to the grocery store, but we both enjoyed our time.  He weighed all of our produce (something I have never done) and marked everything off his homemade list.  I think his troubles melted away somewhere between me telling him that if he could find the artichokes we could buy some, and when I let him pick any cereal he wanted.  

So mom, dad... If you buy me whatever I want it might make me feel better.  :-)