Hero Pictures and Emmaisms

I can just hear the Batman theme song in my head now...duh-nah-nuh-nah-AUSTIN! I want to get some good pictures of before the transplant. We will be admitted tomorrow morning, what a blessing to have this opportunity.

Emma has some cute things she has been saying lately:

Ben: What is your doggies name?
Emma: Hmmmm...
Ben: Isn't it Ruff Ruff?
Emma: No Daddy it's Ruff Ruff Jones!

Mommy: Mommy Jones. Daddy: Daddy Jones

Emma: What's that?
Cortney: A scarecrow!
Emma: No, no, no! It's a nicecrow!!!

Emma:
Bruddie you're cute! You're cute! Okay?
Say cheese! CLICK! (she actually says click while she takes the picture with her cell phone).

She could be saying something like "Daddy is at work" and then I tell her "Actually, he is on his way home right now" then she will say "OH YEAH (a real emphasis on this phrase)...he is on his way home" then she will giggle, almost like she is laughing at her self for not saying that in the first place. Very funny.

Emma loves all things tiny, and insists that she is "Baby Emma", and she is tiny. She says that she always wants to be tiny, and gets mad when we do not give her the smallest portion, or call her a big girl. She says "No! I tiny!". Ha!

We have a great Young Woman in the ward that has been my Mommies helper for the past couple of months. She comes over two days a week and helps with anything. I really love our Amanda! We all do. *Sniff* We are going to miss you Mandas! (That is what the kids call her) We are so grateful to her, she has been a great help.

Seattle

Brie and Sandy

In the beginning of July on the 6th my Mom called me to let me know that her sister was going to pass away soon. Sandy was fist diagnosed with breast cancer 5 years ago. I purchased a ticket that very night to go on a red-eye on Friday the 7th.
Sandy and her partner Brie have always been special to me. Sandy was very laid back, intelligent, always cracking jokes, and smiles. Brie smiles a lot too, she can be methodical, she is passionate, and intelligent as well.
Sandy passed on July 19th in the early morning. I was so glad that went up to see her, and to see Brie.

Pic-in-ick Time

About a month ago we drove up to Frazier Park to have a picnic. Before we left the kids got the idea to take my newspaper basket, empty it, and fill it with all sorts of goodies. They went through the fridge and packed strawberries, jam, eggs, among other things. They reminded me of Yogi Bear when they would say "We go on a pic-in-ick Mommy? With the pic-in-ick basket? Pretty stinking cute. We started out and stopped to get Popeye's Chicken (yuuuummm) and drinks. Emma loves Sprite, so we got her some. The weather was great, and there was a little pond with ducks. The kids loved it. I was not happy when I discovered there were geese. When I was a child they would chase me when I visited my grandparents. They approached the table when I was there by myself. I quickly packed up and ran! It was a great little trip.

Isolation is a Good Thing

T-minus one week and Austin will be receiving one of the best gifts ever!!! We had our last transplant appointments yesterday. We had to:

1) Have labs drawn (11 viles of blood!?!) for the last cross match. They combine his blood and Jacob's to see if any antigens develop. This was done a while ago, but they double check to be sure that nothing has changed, or that any mistakes were made earlier. They also run other tests.
2) Have a chest x-ray.
3) An EKG.
4) Hospital pre-admidt.
5) Meet with the surgeon.
6) Meet with the nephrologist.
7) Go to dialysis.

We left around 7 am and got back around 8:30. It was a long day, but we felt very accomplished, and Austin did a great job!!!
While were at the hospital pre-admission I received a phone call from transplant stating that I needed to get over to the transplant clinic at once, that the Dr. I needed to see was there. I was some-what annoyed since I had a lot of stuff with me, a rambunctious little boy, had just finally had our name called to go into pre-admission, and now had to leave and carry everything over to a new building. But I hurried over anyway and was greeted by a very unassuming quiet Dr in his long white coat. He informed me that our surgeon was on sick leave and he would be replacing her. I was not very happy to hear this since it was so late in the game. I asked him how many transplants had he preformed and he informed me "over 2,000". Then I asked "how many pediatric?". He couldn't give me a full answer, he said something like "oh, well, I have done quiet a few". So I asked how to spell his name and explained that my family would like to know more about him, so basically to look him up. He smiled and told me he would do one better and gave me his card. He was very kind and patient as I continued to question him on the process. He was very gentle with Austin. I like him, I told Ben. He asked to see his card (which I had not bothered to look at) and informed me that he was the Surgical Director! HA! I had been grilling the guy that probably taught that surgeon that he replaced! I laughed at myself, and now it totally made sense that transplant wanted me to hurry over to see him, he doesn't have tons of time I'm sure. Yeah I kind of felt dumb, but sure am glad that he was patient with me and answered all of my questions. That is my kind of Dr. So I am actually kind of happy with this new development, and we feel pretty blessed.
Austin will go in on Monday morning, have dialysis, go on a clear liquid diet, get an IV started. Jacob is coming in Sunday night, and will spend Monday night in the hotel room. The surgery will take about 4 hours for Jacob and around 6 for Austin. They will be in operating rooms right across the hallway from each other.
Jacob's recovery will be about 24-48 hours before he can leave the hospital, and then another 6-8 weeks before any heavy lifting. Austin will be in the hospital for a week or 2, and in isolation for about 2 months. He will have labs drawn Mon and Thurs for a couple of weeks, then only on Mon for a couple of months, then every 2 weeks, then every 3, till he will only need to go once a month. All the lab work will help the Dr.'s adjust his immuno-suppressants to where they need to be. He is on immuno-suppressants right now, so we are in isolation right now. I woke one day with a runny nose and almost had a heart attack, thankfully it was allergies. I have NEVER been so thankful for allergies! If any of us gets Austin sick we might have to move the transplant.
They said that if all goes well we can go to Wa for Christmas!!!!! But that Austin needs to stay out of big crowds for about a year, so no Make-A-Wish trip for 12-18 months post transplant, or Disneyland, or other crowdish places.
Thank you all who pray for our little guy, hopefully he'll come out on the other side of this swinging, and ready for the rest of his life.

Austin's Other Birthday

We were just informed that Austin will have his transplant on August 2nd. Quite literally this will be his other birthday, a new lease on life. A gift. We are a mix of emotions, but I think that we are mainly in disbelief. We worked really hard to get to this point, and felt sometimes we were pushing just for pushing's sake since things were at a stand still for so long, but now it is right around the corner. I try not to think of how scary this is, and just think of all the great things that will be a result of the transplant. When I take any time to really think about it I get really scared and sometimes I even get sick to my stomach. So I try and keep busy, and distracted. Ben and I were talking today about how we are kind of in survival mode. I have to confess that I have not really made dinner in 2 weeks, or really cooked at all. So yes we are in survival mode right now, but happily so. What an exciting time for our family! It is scary, but I think that I am going to keep myself in denial and just not think about it.
I am so grateful for this gift from Jacob, whenever I talk to him I really don't know what to say. What can you say to someone who is giving you such a precious gift? I thank him but words fail me beyond expressing this simple declaration.
We thank you for your continued prayers.

Pociągi

Last summer when Austin was at Spokane Children's one of the nursing students found this video for Austin. It was a life saver sometimes. Austin would watch it over and over again and eventually learned the song and would sing along to it. Whenever he wanted to watch it he would say "Ding-ding train!!!". The video is Chezc and shows a bunch of electric commuter trains. I am writing about this since he is starting to grow out of this phase. Now he knows the names of the types of trains and asks for them specifically instead of just ding ding train. He spent this whole last year asking for ding-ding train and it makes me kind of sad how lately he seems to be growing up so much. *Sniff*

Here is Pociagi aka ding-ding train.

Little Known Nuggets

Here are some little known tid-bits about....

Austin

• When Austin says any word that ends in the letter 'n' he also puts a 't' on the end of it. One of his favorite phrases: "Do it again-tt".
• This morning while we were driving to dialysis Austin was looking around the freeway and said "Mommy, lots a people going to ialysis!" I responded that we needed to hurry to get a parking spot.
  
• He loves giving kisses, The show The Little Einstiens, going to the aquarium, playing Angry Birds on my phone,
  
• He will be playing and having fun, then all of a sudden, sometimes mid sentence he will say "W-A-T-E-R" in a half guttural, half old man sort of way.
• After he get's onto trouble he will ask me if I am happy, in other words, are you okay with me now mom? That makes me feel terrible especially if I was harsh at all, but it also makes me feel good that he wants my approval. He is a great kid.
• He loves baseball and can hit the ball half of time, and catch the ball.
• He always tells his dad "I wanna fight you!".
• All of the nurses, techs, or aids are Dr.'s.
  

Emma

• When she is mad she will yell "NEVEEEERRRRRR!!!!!". Pretty funny
• She started really loving her baby dolls about 2 months ago. When they are sick she says "Babies sick, need to go to ospital, baby needs to go to ialysis."
• She loves to be a little momma. Whenever I have to change Austin's catheter dressing, or when he is throwing-up Emma will ask "You okay Bruddie? You okay?".
  
• She gets upset whenever anyone makes a mess. Ben sprayed the window with the garden hose and it made her really mad. "You made a mess Daddy! You made a mess!" She had a scowl and was leaning over and waving her finger at him.
• Lucky Charms are her favorite cereal.
  
• Combing my hair, and taking baths are some of her favorite activities.
• Her blankets and her pillow have soft satin parts that she strokes to go tot sleep or comfort herself, she also twirls her pony around her finger and sucks her bottom lip.
  
• Ariel (Ari-well) from The Little Mermaid is her favorite toy and it's her favorite movie.