Big DAY

Today we start the countUP. Today, September 15, 2009 is the day Claire is placed ACTIVE on the waiting list to receive a new kidney and liver. Today is Day 1. Any moment from today on we could get "the call." The phone will ring. The call WILL come. Today is a BIG day.

Day 1 ~ A stop at the water pond on the way to dialysis is a MUST!

Benson came to dialysis with Claire today. We had a fun time blowing bubbles, coloring, reading books, and watching a movie. Diane and Scott were Claire's nurses. Benson especially loved racing his new monster truck back and forth with Scott. Both nurses commented about how well Claire AND Benson do for 3 (sometimes long) hours. They are troopers! Our summary for the evening included the kids new favorite game London Bridges, races around the house pushing strollers and walkers, and watching tennis while the kids settled down for bed. Both kids were particularly enthralled with the sport and got the hang of clapping for the players real quick!

We're excited, anxious, nervous, scared, and thrilled about TODAY!

a few BirthDAY pictures

The MoNsTeR TrUcK birthday cake!!

Can't decide who's having more fun in this picture! So INTENSE!!

Spider Man Spider Man...what little boy doesn't like SPIDER MAN?!?!...and the famous Birthday Crown from preschool!

Present time for Claire!

Where Claire spent most of her birthday...

Happy 4th Birthday BENSON!!

And the birthday FUN continues!!

Benson had a wonderful 4th birthday today! He was sooooooo excited to be turning four years old! He woke up to balloons surrounding his door and streamers and balloons hanging from the ceiling in the family room. He asked who did that and why they did it. Typical questions from him!

He went to preschool and was the birthday KING! They had a crown for him to wear all day and he said they all sang Happy Birthday to him! He got to take in a special birthday snack, which he decided would be popcorn, grape juice, and multi-colored licorice.

When Claire got home from dialysis, she surprised him with a big spider man birthday balloon!! After naps and quiet time, he blew out the candle on his monster-truck birthday cake and opened presents. If anyone asks him what he got for his birthday, his first response would probably be his new very own fishing rod. I'm not quite sure why he wanted one so bad.....we're not much into fishing.....but he really wanted one. Grandpa and Grandma Skinner got him one and he was thrilled!! I guess we better find somewhere here to take him fishing. He also got a V-Tech play/learn center, the cutest Sunday suit for church, shoes, money, pj's, craft things, his own package of skittles, and of course, a monster truck. One very happy 4-year old after present time.

We went to eat at Gorilla's, something similar to ChuckyCheese, and had a great time eating our 'burgers in a bucket' and playing a game or two. At the end of it all, he turned in his tokens and got a pencil. Hope he takes gooooooood care of that $5 pencil!! We came home and played his new 'tv games' and finally got everyone settled down enough for a later than usual bedtime!!

A great day for a great little boy!!! He is such a blessing to our family! One of his new favorite things to do is to help watch Claire and make sure she doesn't get hurt. He's already starting to watch over her and protect her...just like a good big brother should! When they both go outside to play, he assures me that he'll watch Claire to make sure she doesn't fall. And when they want to climb up the big hill in the backyard, he walks behind her and softly keeps his hand on her back to make sure she makes it all the way up without tipping backwards. Such an amazing big brother! He loves that little girl!! He really does. He was so sad to hear that she had to get shots last Saturday and was very sympathetic to her sore legs and the band aids on them.

Apart from being an amazing big brother, he is the greatest friend, the happiest grandson, a curious "student," and a son who still amazes me every day with his attitude, adaptability, ENERGY, and LOVE! Beyond any doubt, he was also prepared to come to our family and be the amazing boy he is. Four years ago today our lives changed forever. This sweetest Benson boy was born into our family....and we are so blessed to have him forever!!

Family Pictures

Go here to see some darling pictures of our family. Our good friend Melissa Howell took them just before we left Colorado and she couldn't be a more talented photographer.

http://blueprintsphotography.blogspot.com/
(you have to scroll down a little to see them.)

Claire's Happy Birthday (or was it?!)

I don't want this post to sound negative...but it might. I'm just saying it how it is. No sugar coating. No pity parties. Just how it is.

I was really hoping Claire's second birthday could have had a bit more HAPPY in it. As it turned out, we were at the hospital from 8:00 a.m. till 4:30 p.m. No break. What a way to spend your sweet little one's birthday. Dialysis went fine. Although towards the end, she let us know she was ALL DONE! I knew we were in trouble then, when she was "all done" and it was only 11:15. The three appointments that followed were good. Except for the waiting time that is typical of doctor's offices. It seemed e x t r a l o n g and annoying. Especially where you're placed in a small room for 45 minutes (when you've already been waiting for 20 in the other waiting room) with a 2-year old, with hardly any toys, no window, no kid books, and your both tired and board out of your mind WAITING!! The sink became our greatest source of entertainment. But seriously, an automatic on/off faucet only stays fun for so long. I'm a pretty patient person. And so is Claire. So you know it's bad when we were both just about ready to scream! Okay, maybe not scream (although Claire did voice her annoyance quite loudly a few times) but both our frustration levels were reaching their max!! It was a simply a long day at the hospital on one of the few days of the year we would simply rather not be there.

Such is life. Our life, at least. For now.

You can tell I'm still just a tiny bitter about the whole thing. Be glad I didn't post last night or it would have been worse.

When we finally got home, Grandma Susan, Benson, and Jared had decorated the living room with streamers and balloons. It made me happy. It scared Claire. She didn't want any more stimulation. We finally got her to walk inside the room, but she wasn't the least bit interested in having any sort of party or open presents. She was tired. Benson gladly volunteered to help her get going with the wrapping paper, and once she saw how much fun he was having, she joined in. She was excited about all the fun gifts she received and we ended up getting a few smiles out of her. She blew out the #2 candle on her birthday cake and we took her to bed.

The best part for me about her birthday was simply remembering her coming to our family 2 years ago to the day, to the hour. Giving birth to her was a marvelous, energizing, wonderful experience and I love remembering that moment when she was placed in my arms and joined our family.

It was a happy birthday, because it means she has been with us for two amazing years. She has touched many people's hearts in her short time upon the Earth and I'm certain her influence upon others will only grow. Happy Birthday sweetest CLAIRE!

(pictures to come tomorrow)

Backyard

Benson's favorite part about our new house is the back yard. He calls it "the woods." The first day he was here he got help from Grandpa and Dad to build a ramp for him to jump off.

Time after time, after time, after time...he successfully did this:




This was eventually bound to happen:






Of course that didn't stop him from getting right back up and doing it again!

Hellooooooo Minnesota

What a whirl-wind these past few days have been. Emotionally, physically, physically, emotionally!! Jared, Benson, and Jared's parents drove over 16 hours and safely made it to Rochester, MN Saturday afternoon. Claire and I followed Monday morning.

Monday morning. Interesting day. Memorable last day at the Kidney Center in Denver. I came in thinking it would be somewhat memorable, but not as much as it turned out to be!

Claire's catheter got cracked when they were getting ready to put her on dialysis. That happened back in April(ish) and they ended up replacing the whole catheter and putting a different one in on her other side. No fun. What perfect timing to have her catheter crack again, hours before we were to fly out to MN and begin our new journey here. Our doctors and nurses were quick to get on the ball and called the surgeon to see if the catheter could be repaired without having to replace the whole thing. I prayed it could be repaired. So instead of spending her morning on dialysis, she walked around the center, played with the nurses, and got a dose of Vanco (antibiotics) just in case any infection got in with the crack. The surgeon finally made it up around 10:45 and said he hadn't really ever repaired a catheter like this before, but under the circumstances, he'd give it a try. Claire was sooooooo good (no shock) while he and his assistant did what they could: took off the cracked blue port, cut off that same piece from a new catheter, and medically glued it on her catheter. The surgeon didn't know if it would work or not when we tried to dialyze again, and if it didn't the catheter would simply have to be removed and replaced.

By that time it was 11:30 and time for us to head to the airport. That's when the emotions began to swell. Our time at the Kidney Center had been amazing. I truly couldn’t have hand picked a better staff to work with....or to be working on my daughter. I was very sad to say good bye and felt sad in Claire's behalf, because she didn't understand that she wouldn't see these people who loved her so much again....at least for a while. She loves them. They literally saved her life when this all began and continued to do that every day. With a smile. With laughs. We said our final “see ya laters” and sadly drove to the airport.

Before we left, Claire had to take some medicine that made the next few hours memorable beyond expected. Because she wasn't able to dialyze on Monday, she had 2 days without dialysis. They tested her potassium and it was high. Dialysis keeps it low and at safe levels. So they gave us some medicine (that looked ironically like poop) and said it would bring her potassium down to safe levels. She needed to take one dose before we left the hospital and one dose again later that night. They asked if I had lots of diapers and wipes for the airplane ride. There's the first sign of trouble. They loaded me up with a bag full of diapers and a full container of wipes. Oh, how I needed them.

Wish they would have given me an extra change of clothes. For both of us.

Blow out.

Waiting to board the plane I could tell she was pushing. As soon as I saw she was done, I quickly swooped her up and rushed to the bathroom to change her before it was our turn to board. As I carried her in my arms, I could feel my hip getting warm. I looked down and saw my pants with streaks of brown down my thigh. So not funny. Upon arrival at the bathroom, the rest of the damage was exposed. Her complete lower body was brown. Back of the use-to-be-white-shirt: brown. Both pant legs: brown. Socks: not so pink anymore. Cute Nike shoes: brown swoosh.

She rode pant-less on the airplane, with a blanket wrapped around her lower half. We stunk (to say the least). I felt bad for the people sitting around us.

Note to Kidney Center Staff: If AT ALL possible, don't EVER send some poor, innocent, clean soul on an airplane just hours after giving them that poop medicine....medically known as potassium reducer. Smiling about it now. Not such big smiles then!!

SO the memories were fun that Monday. I cried again on the airplane (not just because we smelt so bad) while Claire and I looked at the wonderful photo album the staff at the Kidney Center made for us with their pictures and thoughtful words. We love you guys. Claire loves to look at your pictures and still says each of your names when she turns the pages.

We made it to Minnesota and Jared drove us home with plenty of ventilation in the car. I didn't even feel bad for him.

Big new the next day....her catheter worked!!! Thank you Dr. Karr for being an amazing surgeon, successfully repairing Claire's catheter, and allowing us to avoid yet another surgery! We haven't had any problems with it and all has gone well with dialysis.

It's all the other testing they've had Claire doing that hasn't been so fun. We met with our Nephrologists, Transplant Coordinator, did a urine sample, and a chest x-ray the first day we arrived. All of that was okay except for the chest x-ray. Very scary for Claire. The position they put her in, the special x-ray strap they put across her legs to keep her down....just the whole experience was quite traumatic for her. She was more than ready to say 'bye bye' to those technicians.

The schedule we've been on this week has all-around been rough. They've had tests / exams / dr. visits scheduled for us all morning and then we've been dialyzing in the afternoon and getting home between 4-6. Long days for little ones. Thank goodness Grandma is here to take care of Benson.

Not to mention the stacks of boxes we have lined in our hallways and piled in our bedrooms, just begging to be unpacked.

Among other visits, she had an electrocardiogram yesterday and an ultrasound today. This type of schedule will continue through next friday, when all the testing/evaluations should be complete and we'll be able to get back into a morning dialysis regular routine. Unfortunately, her oxalate level was way high tuesday morning (because of missing 2 dialysis days in a row) and they want her to dialyze this Sunday as well to try to get her level back down. I'll be excited when these first two weeks are over and life settles down a little bit.

Oh the fun. Oh boy, oh boy, oh boy!!

More later.