Mayo Trip

Overall, the one word I use to describe our trip is insane. It really was crazy busy. But to be expected for all we had to get in in a short time. Before we left, Jared and I joked that we could kind of count this as a family vacation...since we haven't been able to do that for a while. Sounded like a good idea. Boy were we wrong. NO PART of the past week a half can be categorized even near the word vacation. Being at home, even with the crazy schedule we have here, was closer to a vacation than what we experienced. Good busy....ornery busy, for kids with limited sleep....busy!

Here are some of the highlights. It's long!

Blessings and mini-miracles

None of us got sick--before, during or after.

Claire layed perfectly still though her echo, EKG, and ultrasounds. VERY unusual for her. They were thinking of sedating her through the echo, but tried it first without meds. That prayer was answered as they got exactly what they needed without any sedation. Except for the last one they did a day before we left. She was tired, all done, and simply sick of people touching her!! Can't blam the girl. She wasn't so happy having the x-rays done, but she was literally strapped to a chair for that...what do you expect.

Claire's bladder catheter stayed IN after almost coming out several times. Therefore, the 24 hour urine collection really only took 24 hours!!

Claire and I only had to stay one night in the hospital. Happy for all 4 of us.

We left our binder of medical records/itinerary and basically everything medically important for our trip in the wheelchair we were borrowing to haul all our stuff around and didn't realize it until we were back at our room, hours later. That binder could have been anywhere around Mayo and someone could have never noticed it tucked in the back pocket of the wheel chair. When we went back, it was sitting at the front desk waiting for it's rightful, thankful owner to claim it!!

The kids were champions in the car. 14 hr drive is no easy task for anyone but they were fantastic.

We got to stay at the Ronald McDonald House for $10 a night!

I meet with another mom and her 3 year old girl who has the same disease as Claire and Benson. She got her kidney/liver transplant when she was 18 months old at the Mayo. It was great to talk with her about her experiences and get her advise on various things. That was a blessing that she just happened to be there for her annual liver biopsy the same time we were. Great connection with someone who understands a lot of what we're going though and what is to come.

Ah ha moments--things we found out

Clinically, Claire is doing well. They are impressed with her current condition, attitude, energy, and physical strength (and of course how adorable she is!) The surgeon is happy to see a big(ish) tummy on her (thanks in part to the pertineal dialysis that stretched her abdomen) and would feel comfortable doing the transplant now if needed. But since she is doing relatively well right now, we're going to keep cruising along and fatten her up as much as we can. The docs hope she can be ready for transplant within 4-6 months. If anything changes in the mean time, or her condition worsens, we'll do it sooner.

That means, they are officially listing her on the transplants lists for a kidney/liver but will not "activate" her until she's bigger. Listing her without activation will give her 'waiting' time that will help boost her higher on the list for when she is ready to get the organs.

The biggest concern for Claire right now is her bones. Surprised us. We knew she had deposits, but we didn't realize how sever they are. They are surprised and happy she is walking and getting around well without any pain in her joints. If any of that changes, transplant would be moved up.

Claire can definitely see. The ophthalmologist said she indeed has significant deposits/oxalate crystals in her eyes, but they don't affect her vision as much as would be expected. Both the eye and bone deposits will eventually go away, after transplant...years down the road. She most likely does have some vision damage (which won't go away), but it doesn't seem to be significant.

Claire is blood-less. Well not really, but they drew 15 ml from her EVERY day!! That is a lot of blood from a little girl. She'll be getting a transfusion on Monday to boost her back up. She's pale.

Protecting Claire's new transplanted kidney will be one of the most important things to watch for post-transplant. All of the oxalate in her body now has to be sent through her new kidney to get out of her body. Protecting her transplanted kidney with LOTS of water, and possibly even occasional dialysis will be necessary until the oxalate is removed. It could take years for the over-load of oxalate to be removed from her body. It is possible to "lose" the transplanted kidney due to the load of oxalate going through...leading to permanent dialysis and yet another kidney transplant. Just FYI for our preparation of what is possible to happen. Obviously something they try to prevent at all costs, but not unheard of.

Benson is doing well....but on the spectrum of kids who are doing well, he is on the higher-risk end of the scale. The 24 hr. urine study they did showed an elevated amount of oxalate passing through his system....which is good it is getting out of his body....but means the kidneys are taking the hit for it. Watching his kidney function and increasing his B6 is just about all we can do for him right now. ((and prayers, of course)).

Benson knows how to share his mommy with his sister. He loves that little girl.

We started Claire on a new medicine called oxalabacter. It is a new drug that is not even FDA approved yet and has only been used in two clinical studies. In both studies done, the results were very varied. (which is why it is not FDA approved yet.) On some patients, it was VERY effective in removing oxalate from their body. On other patients, it didn't seem to make any difference at all. But they did get permission for Claire to try it on a 'emergency/trial' basis. It's worth trying....if it could get rid of some oxalate in this in between time before transplant and protect her body, it's worth it. So far she hasn't had any side-effects from it. We'll test her stools every week and her oxalate level every 2 weeks to see if it's working. If after 3 months there isn't any significant change, we'll stop it. We're praying it works. ((they won't let Benson try it because his situation isn't as sever as Claire's. Possibly after more tests/studies, it would be available for him.))

We should have taken a stroller. Mayo is a big place.

It is miserably, stinking cold in Rochester. Only one day was above freezing.

I need a vacation. :) A real one!

It was a great blessing to be out there. We were talking to the right people at the right time with the right expertise. We trust their judgment. That is a good feeling. Better than any vacation. Well, ya know! :)

Here we go!

Well, Claire's blood cultures came back negative....so the antibiotic is doing it's job and we don't have to switch her catheter out! YEAH!! She's doing very well now and is off and officially walking!! Such a big (little) girl!!

We're getting ready for our trip to Mayo. We'll leave Saturday, 24, and will be out there till February 4. We've got a full line up while we're out there. Appointments every morning then dialysis every afternoon from 1-4. She'll be admitted Mon-Wed for a few inpatient procedures and then we'll stay in the Ronald McDonald house the rest of the time. Claire will HATE it, I'm sure. Not knowing/trusting ANYONE....limited naps....procedures, tests, and exams galore! Good thing she forgives quickly (but forget, she doesn't!) Benson's schedule will be a bit more relaxed. Few blood/urine tests and other exams...but nothing too damaging! He's amazingly understanding when we need to do 'work' on him...so I'm sure he'll do just great!

Lots to pack!

I'll try to keep this updated while we're out there...((mostly for my own sake so I can remember before things get all mumbo-jumbo in my little mind.))

Thanks to all for your thoughts and prayers.

Oh man

Claire has another infection in her blood. It's so crazy how it can happen so fast. She was doing great for the first 2 1/2 hours of her dialysis Monday. And then the Rodeo Queens came in. They come around to visit every year and Claire did not like it one bit. I think it brought back bad memories of her Santa experience. Was it the hat, the sequined shirt, the bright red lipstick, the puffy hair, or an infection? I was leaning toward the hat...but after they left, she was still not acting normal. She quickly changed from her happy, waving, and chatting/YELLING self to cranky, tired, and miserable.

Still not knowing what was causing this sudden change, the docs took blood cultures and started treating her with antibiotics, just in case. I actually didn't think it was an infection; and to be quite honest, was frustrated they were making us stay longer to do those things. Call me crazy, but I just wanted to go home and let the girl sleep. I just figured the "queen" thing set her off and she got tired and cranky. I know, I know....I was quickly humbled. In retrospect, I'm so grateful the docs did what they did and acted quickly on it. They ran the antibiotics directly through her catheter line and it takes about an hour for them to go through. She was miserable during MOST of that hour and I knew then, by the way she was breathing and her heart rate, that she had an infection.

Up to that point, the docs said we would need to be admitted to the hospital and stay at least one night so they could keep an eye on her. Again, selfish me was disappointed at the news and longed for a good nights rest at home. And then there was some good news for all of us. As the antibiotics were just about nearing completion, she almost instantaneously started feeling better. She wanted to drink, play, wave, and yell. Good signs that our little girl is "back." When she turned around so quickly, after getting the antibiotics, they agreed to let us go home, trusting we would monitor her closely and come back if anything changed. YEAH!

So today we got results from the blood cultures and they were indeed positive. The infection is right there in her catheter and will be treated with this same antibiotic for 2 weeks. Luckily, our trip to the Mayo won't have to be put on hold...as we have exactly 2 weeks before we will be out there. That's a blessing.

So the average of kids getting infections in their catheaters is about 1 a year. This is Claire's second....and we've been doing this now for 6 months. I hope that means we're all clear for the next 18 months!!

Phun Fotos

YUCK. Gives me the eeee bbaaa kaaa geee beeeerrrrssss just thinking about it.

(By the way, these first few were taken at the Butterfly Pavilion. We went there on New Years Day. Day off from dialysis means you gotta do SOMETHING FUN...and it was!)

Climbing in the honey comb.

Benson loved touching the Star Fish.

Claire hated seeing the butterfly (up close). It was like a jungle in there...with hundreds of butterflies flying around! ((and a few not-so-lucky ones plastered to the walls. :( ))

Claire is crusing all around the house with her walker! Not off and on her own yet, but soooo close!!

Jesus gets Benson for a SUNBEAM!! He loves it!!

I just couldn't pass up this picture. Claire's not too sure, but I just love the dress! And Benson's always up for a cheese ball picture!

Benson is seriously growing up right before our eyes! He is looking and acting like such a BIG BOY. He reminds us OFTEN that he is, indeed, a BIG boy! He loved wearing a tie today for the first time.

Oh, and Claire started saying Mom/Momma this week! Another happy mommy moment for me!

Lovin' KIDS!!

While getting ready to brush his teeth tonight, Benson asked..."Where did all the food go that was in my teeth?" "Well, probably into your tummy." (thinking thinking thinking) "I want a BIG tummy, just like my Grandpa." (thinking thinking thinking) "But I miss my Grandpa. I want him to come see me."

Mayo Trip

We just got word that we'll be able to go out to the Mayo Clinic this month! Exciting...a little scary that the process is actually beginning! The Week of January 26 is when we'll make the trek. Details to come!

Christmas cont.

We really were extremely blessed this holiday season. We were blessed to be home as a family and even if it's really not, life just felt simple this season. It has been so great to have Jared home and not at school! I'm sad to see that come to a close as the new semester starts on Monday. But the BRIGHT light at the end of that tunnel is just ahead! He'll be DONE with his MBA the middle of March...which will make this last semester easier to endure through!

But as I was saying....we were extremely blessed. Many offered gifts of service to us this season through a Secret Santa left at out doorstep, many plates of holiday cookies and treats, gifts and gifts cards from the hospital, and some very generous monetary contributions...some from we know who to thank for and others sent anonymously. For all we thank God. We were humbled almost every day at the kindness, love, and generosity offered to our family. It has been a wonderful season to draw closer to Christ, remember Him, and recommit ourselves to Him.

On the fun side of it all, Benson got his hot wheels roller coaster from Santa. "Is that for me?" he asked perplexed?! Claire got some small, hopefully entertaining toys to take to the hospital to enjoy during her treatments. And the one big gift we got both the kids was a small toy kitchen for them to play with. I think it will be instrumental for Claire to at least find the fun in pretending with food since she doesn't eat anything right now. Benson is really getting into the pretend/make-believe stage and is loving being the chef of the house!

My favorite gift is my new white tennis shoes and Jareds is his 12 inch dutch oven. It was a simple Christmas filled with great memories and much to be grateful for! LIFE!






((I'll have to take a picture of my tennis shoes! I've been looking long and hard for a pair I liked and finally found them! I get happy every time I look down!))

Oh and some of the best news of all....drum roll please....BENSON IS POTTY TRAINED!!! Just another one of those proud mommy moments ((not that I really did anything. It just had to click! and it finally did!)) Actually, that was kind of the deal with the roller coaster. No diapers + big boy underwear + staying clean & dry all day = roller coaster! Simple math. We all understood the rules...it clicked with him and HAPPY DAY for everyone!!!