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!!

Surgery update

Now you see it

Now you don't.

The surgery went really well yesterday. Everything went smoothly and exactly as expected. The surgeon did a great job and said things should heal up quite nicely. Claire recovered much better than she had in any of her previous surgeries. It was much less invasive than the others because they only had to take it out and haven't placed another one yet. She slept well that night and the nurses were surprised how active she was today on dialysis...with surgery just the day before! But that's just who she is! Quick to bounce back...doesn't let much stop her!

Jared and I just before we went back with Claire into the OR.

Not feeling too great right after surgery...but getting better!

Here we go again

Claire will have surgery #4 or #5 (I've lost count) tomorrow morning to remove her pertineal dialysis catheter. It shouldn't be too major of a surgery for her, as they will simply be removing her catheter. Our doctors have decided NOT to replace the catheter right away. They are going to do some more tests this coming week to determine if they feel she even needs to continue the PD dialysis. The hemo dialysis is what is doing MOST of the work in getting the oxalate out of her body, but our doctor at Mayo also does feel there are advantages to her being on both kinds of dialysis. So we may not do the PD dialysis for the rest of this month, unless the labs they run this coming week show otherwise. If when we get to Minnesota the first of September our doctor at the Mayo wants to resume the PD, we will have one placed out there and start back up with it. I suppose we'll just take it as it comes. Two differeing opinions from two different doctors. We obviously just want what is best for Claire, and will do whatever it takes to make that happen.

Claire is amazing. She goes through a lot. I'm still amazed at her and how well she handles everything. Truly blessed. We'll be glad when tomorrow is over and everything has gone well.

Our official move date is scheduled for August 29. We'll leave right after Claire finishes dialysis around noon and drive at least half way. Most likely, we'll end up staying the night somewhere in between here and there and arrive in Rochester, MN August 30. Here comes a fun-filled month of de-junking, packing, messes, movies (to keep the kids busy), boxes, and tape!

what to do, what to do

Well, Claire has another infection in her PD catheter (that's the one on her right side, just above the diaper line that is hanging down to the ground. We just can't seem to get the infection to go away. We think it's gone and then about a week or two later, it comes back. So now we're trying to decide what to do. The doctors have had her on antibiotics for the past couple of weeks and are trying to decide if we'll just need to remove that catheter and place another one in on the other side. That would obviously require another surgery. We may give it one more chance to clear up and take her off the antibiotics...and if it doesn't clear up this last time, then she'll for sure have to have the surgery and get it replaced. Poor princess. She's a champ through all the antibiotics and painful dressing changes...but it is hard to have her go through another surgery.

And for the exciting, really good news...OUR HOUSE IS OFFICIALLY UNDER CONTRACT!!! We are so excited and feel blessed to be able to begin moving forward with our plans to move to Minnesota to prepare for Claire's transplant. We are scheduled to close on August 28 and are also grateful to have the next 6 weeks to get our ducks in a row as we try to figure out living arrangements in Minn. and insurance issues for Claire. There will probably be some lapse of time between when the insurance will get accepted in Minn. and when we close on our home here...but we'll make it work the best we can!! We hope things continue to go well for the buyers of our home and that everything will work our according to plan!!

Claire is growing up sooooooo fast!!! Her language has really progressed over the past month and she is pretty much repeating everything we say!! That includes everything Benson says as well...which can be good and bad. She's picking up fast on his numerous 3-year old NOOOOOO's, and loves to say "Owie" not even when she's hurt, but it's her way of saying 'stop that please.' She gets the cutest little smile when she gets to say prayer (with us or Benson prompting her on what to say.) She's so proud of herself!! It's just amazing how much she is growing up. She loves to play pretend, loves her baby, and wants to take baby everywhere with her. We got the cutest little doll house at a garage sell yesterday and she adores it! ((Or maybe it's me who adores watching her play with it more than anything....so cute....and even better that it was a garage sell find!!!))

Duddy frog, as we sometimes call our little Benson boy, is most definitely a 3-year old BOY!! All BOY, that's for sure. I decided we can pretty much just count on a crying/yelling melt-down every day sometime between 4-6 p.m. It's just what we do around here. I'm thinking that's just part of being a growing-up toddler. Hoping he's not the only one out there melting down at least once a day, but trying to deal patiently with it none the less!! Gotta love all the different stages we get to go through with our kids. What I do love about his stage is that he's able to do things with us as a 'little kid' now....some of our favorites being badminton, baseball, and kick ball/soccer. And he is just so willing and yearning to LEARN right now. They're just like little sponges, soaking up any glimpse of information they can find. He loves to read, have me help him write his name, and watches like a hawk when you show him how to do something new so he can be sure to do it by himself next time. When we get frustrated or anxious about how long it might take him to do something all by himself, he kindly reminds us..."but Mom, I'm learning." Oh what fun it is trying to figure out this parenting thing, uh?!!!!

I just wanted to post one more picture of Claire. This is when she is getting her dressing changed at the catheter site (((which in some cases makes the "big kids" cry))). Claire sits (sometimes lays) there without any restraint from anyone and hold her hand up by herself, not moving it until she hears the words, all done. They take off the old dressing, clean it with some bleach/alcohol stick, and then secure it back up with a new dressing. She sits still as anyone possibly could during the whole thing. She's watching a movie while they do it which adds a great distraction factor into it all! I see it every day and am still amazed each time.

And playing tea-party at the hospital is one of her favorite daily activities!