Day 5

Being Saturday I (Dad) took Claire to the hospital. Saturday is my dialysis shift, which I enjoy. It’s always fun to be able to spend some good quality time with Claire. Today things went well at dialysis. We took a blood test before we started to see if Claire would need to have the blood transfusion that the doctors and nursers expected. After 45 minutes we got the results and it was good news. Claires blood levels were sufficient enough to avoid the transfusion today, but more tests will be run on Monday to see if she still needs a transfusion. Hopefully she’ll recover from the major loss of blood yesterday. So we occupied our time with blowing bubbles (our favorite past time), reading books, watching the Letter Factory and having a tea party (she’s a great host). Claire is getting pretty good at blowing bubbles with her daily practice sessions.

Day 4

Today was quite the day. Again.

Last night Benson threw up three times. There are few things worse than a little one with an upset tummy in the middle of the night. He was miserable and so were we. He is doing much better today as far as the tummy goes. However, now he has a fever, cough, and runny nose. Poor guy. He stayed home from preschool with Jared and thankfully got a little nap in while watching a movie. He’s feeling a little better tonight and we’re hoping this sickness doesn’t linger long. It’s nice that it’s at least the weekend so I can stay home and take care of him. Claire has got a runny nose and we’re praying the sickness stops there for her.

Dialysis was not so good today. Shortly after we got Claire started, the machine kept alarming that there was a blood leak. It didn’t take very long for all of us to see the blood leak in the dialysis membrane. There are lots of little tubes in the dialyzer that the blood goes through. The dialysis solution that “cleans” the blood runs all around the tubes, but the blood and the solution NEVER touch. Except if there’s a blood leak. One of those small tubes was cracked/broken and we could see her blood leaking into the dialysis solution. This exposes her blood to the clean but NOT sterile dialysis solution and that exposure means possible infection. Because of the risk of infection in ‘returning’ her blood to her body, they simply had to stop dialysis and literally throw the whole circuit of blood away. 80 Ml of her blood gone. That is A LOT of blood to loose for a little one. That is heartbreaking for me to see as a mom. Her precious blood that she needs SO much, gone. She looses some blood each time she does dialysis, but we’ve never had to ‘dump the whole circuit.’ Not good. Because of the loss of so much blood, she will get a blood transfusion tomorrow. We’ll add it to the list….making that her 15^th blood transfusion.

After all this happened, I heard many of the nurses say that in all of their years of being a dialysis nurse, they had NEVER seen that happen. They were taught about it and read about it, but had never actually seen it. Only one or two of them said they had seen it, many years ago, and only once or twice. They believe it was a manufacture defect and don’t think it was anything they did different to cause it to happen today.

Thank goodness for the person who donated the blood that my little one will receive tomorrow. Donating blood really does save a life.

On the bright side, I had a great visit with some friends in the area and feel uplifted by the service that has been offered to our family. We are blessed to be a part of an amazing Church family who has stepped right up and assisted us in any way they can.

After the blood leak ordeal, we had a half hour to kill while they set up a new machine and got everything ready start her dialysis again. Claire and I walked around outside and enjoyed a moment of quiet by the water fountain. Still smiling!

Day 3

One of the few quiet moments today.

Today was not an easy going kind of day. Benson came to dialysis again with Claire and I and it was busy (to say the least). They were both demanding, clingy to their mommy, and needed lots of attention. It was a long three hours and we were all ready to get outta there!

But the fun didn’t stop there. Claire had an eye appointment at 1:45 and x-rays scheduled of her hands, legs, and pelvis after that. If you haven’t been to one lately, eye appointments are NEVER short. She's had a plugged tear duct in her left eye since birth and it hasn't ever opened. We tried to get the surgery done to probe it open in Colorado but they couldn't get her in before we left. Here, they're booked out till November. The doctor said since she was already active on the waiting list, he'd prefer waiting till after the transplant to do the surgery. And so that is that. We'll wait till after transplant. Two hours later, we headed for the x-rays.

Claire really doesn't like that room. The fact that they make ME put on the big, scary vest is most traumatizing for her. Her one source of comfort, protection, and security suddenly becomes “one of them.” Now who's going to protect me, she screams! We strap her down for the pelvis and legs, and hold her hand under a thin plastic sheet for the hands and get it done just as quickly as possible. ALL DA DA, is her way of saying All DONE! Yes, finally all done.

Three days up.

Day 2

If you're silly and you know it make a funny face! Her silly face is always the same:

We got a call from one of Claire's transplant coordinator and she said they were writing an 'appeal letter.' This letter would explain Claire's current condition, disease, age, etc. to UNOS (the United Network for Organ Sharing). Through this process, they would be able to get Claire more points, making her higher up on the list to receive a transplant. She told me this appeal process usually takes one to two weeks to go through.

Today when she called she said a new record was set. Claire's appeal got approved in one day. So now not only is she on the list, but she is VERY high up on the list with 24 points. (I don't really have a frame of reference for what that means, but from what I gathered from Claire's coordinator, she's sitting pretty high). The main hold-back for Claire will simply be getting organs that are the right size for her little abdomen. Could be tonight, could be in a month. "Sleep with your phone with you and be ready," were the last words the coordinator said. I wonder how well we will be sleeping for the next little while.

It's a very strange feeling to know that at any given moment, your life can and will significantly change. It's kind of like having a baby. Our bags are packed, we have a place set up for Benson to go, we're emotionally getting ready to pick up and go any hour, day or night, grandparents are also getting ready to come out when they get the call from us, but no one knows when it's coming! And just like having a baby, we are also blessed with NEW LIFE at the end of it all.

One quick side note about today: Fubsee Me Benson, our Beta-fish of 4 months, died today. Very sad for sweet Benson. Jared and I were just talking about Fubsee after dinner and commenting that he didn't look so good tonight, and really hasn't looked that great for the past few days. We took the kids for a walk to the park later and when we came home, my first glance was to the fish tank. Fubsee was definitely 'gone.' Benson pulled the stool over to see and started crying. He needed lots of big hugs tonight. Poor Fubsee....but glad he is not suffering/sick anymore. Benson helped "flush" him as we all said good bye. (A little dose of American Funniest Home Videos also helped lighten the mood a bit after all was said and done.)

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!!