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.

New blog

Hey everyone! As you can see at the right, we have a new blog created for our kids. A few friends and family members will be posting updates on there about medical happenings, upcoming fundraisers, help they need for fundraising events, general Skinner news etc. etc. etc. They will be taking most of the info (at least about the medical updates) from our COTA website, which I update regularly. http://cotaforbensonandclaires.com. We are wanting to get this new blog address out to as many people as possible. If you go to givehopetobensonandclaire.blogspot.com, (or just click on the kids' button) you can get the HTML code to copy the button onto your blog. We invite you to do that and to invite your blogging friends to do the same!!! Thanks for helping us get the word out!

We made the news

We're going to be on Channel 7 Denver news tonight 5:00 p.m., maybe 10:00 p.m., and maybe Sunday morning!! Our neighbors did an awesome garage sell this weekend to raise money for our kids transplant funds and the news came to interview our family! I'll let you know if they post a link on their website.

VIDEOS

I've made some videos about Claire and what it's like for her to be on dialysis. The first one is all about the technical stuff that goes on at dialysis and how it all works.

The second one is the fun stuff we do to keep her entertained every day. Sorry for the length..I tried to cut them down as much as I could. ENJOY!!