Thursday, June 27, 2013

Just the five of us

Last weekend Aaron had a reffing clinic to go to Saturday and Sunday, so it was just the kiddos and me hanging out.  I knew that we all couldn't hang out around the house the entire weekend or we'd go crazy, so I tried to think of some fun stuff I knew they'd enjoy, like...
 Grimes Farm.  This was the first time I loaded up the bikes since Jenna and Brody are without training wheels now.  It was HOT, but I'm pretty sure we ended up going up three miles.  I just walked with the twins.
We needed some water and a snack. :)
 They actually have a conservation center that we never seem to catch when it's open, but we did Saturday.  The kids were so excited!
 They had a ton of "stuffed" animals.  Is that what you call animals that have been to the taxidermist?!  I'm not sure, but anyway, you know what I mean.
I pointed out the bison to Bowen and it scared him to death.  It was kind of funny how much he jumped when he saw the bison!  Jenna decided we should name the bison, "Frankenstein."
They had these mystery boxes on the table.  The kids were a little freaked out to stick their hands inside.

Brody was so excited about this moose!  When we headed to Iowa City last week we had a very in-depth conversation about if there are moose in Iowa, and where do they live, and why aren't they in Iowa...  He's very curious about moose!

 After a trip to Wal-Mart, a quick bite to eat, a Jenna birthday party and a nap it was time to cool-off!
 The kids love having the sprinkler on the trampoline!  Fun for hours! 

 Bowen's face...I just don't know...:)
Blake (below) was a little apprehensive at first, but then he loved it.

 Jenna is super shy in front of the camera, in case you can't tell. ;)
 And then bubbles!

 Blake, bless his heart, tried really hard, but didn't get too many bubbles.

 Bowen finally got the hang of it.
 I also cleaned out my bedroom closet.  Seven bags of crap - gone!  Woo-hoo!  For five seconds I feel organized - Ha!  We also watched a couple of movies, one of them being "Parental Guidance." Have you seen it?  It has Bette Midler and Billy Crystal in it.  The kids liked it and so did we!
This weekend looks like it will be another busy weekend!  I hope the weather cooperates so we can just sit outside all weekend!

Monday, June 24, 2013

Surgery Set

We went down last Thursday for our regularly scheduled appointment for Blake.  All in all, everything went well!  Dr. Jetton was very happy with how he looked.  No fluid overload or high blood pressure this month.  Plus, everybody kept commenting on how tan he is.  And, the dietician commented on his muscle tone. :)  I assured them he is VERY active!

We discussed dates for surgery for a new catheter and they were able to get his pre-op stuff done while we were down there, so that saved us a trip.  Blake has urology appointments scheduled for July 23rd, so we set his surgery for July 24th.  He will have to be in the hospital  for several days to a week.

That's about it.  I like uneventful, we don't get that to often. :)

Wednesday, June 19, 2013

My morning started like this...

So...I had one of those days.  Those days were something kind of sets me off a little bit and then I cry kind of a lot, kind of randomly throughout the day.   My day started with an email from our nephrologist that said this:

Blake's x-ray that we did in May when he was admitted showed that his dialysis (PD) catheter is much higher then it once was because he has grown so much, so here are your options:
1.       Go ahead and replace the PD catheter now – this will buy us some more time to work out the logistics of bladder augment and living donor. He would likely need to stay in the hospital for several days (maybe a week) after as we will have to dialyze with very low volumes for a while and gradually work up so that his new catheter doesn’t leak.
2.       Push ahead with bladder augment and possible conversion to hemo – maybe consider deceased donor? Not sure how the living donor situation is looking?
3.       Continue to limp along with this catheter as long as possible if it looks like there is a living donor on the horizon?

If I'm being completely honest, I can tell you that I was expecting an email like this.  I knew since Blakers has had that catheter since he was only a week or two old that the chances of it lasting much longer were very slim.  He hasn't been draining as well at night.  I just knew it.  I could feel it.

I just got frustrated with the fact that we haven't found a donor yet.  Option number two is just seriously not an option at this point.  Five days a week in Iowa City without a definite end in site would be just insane.  My full time job would be Blake.  And hemo dialysis.  I have three other children.  And a husband.  And a job. And other stuff. 

Anyway, the good news is that Dr. Jetton has emailed the surgeons about possibly setting something up for surgery for a new PD catheter in July/early August.  More hospital time isn't what we are wanting, but it looks like it's inevitable.  We head down tomorrow for a regular clinic visit, so I will let you know what I find out.

Also, another thing that made me cry this morning was this...
It's so incredibly perfect and was posted by another kidney mom friend of me.  I so needed to see that. :)

Sunday, June 9, 2013

So far this summer...

It's June 9th (Happy Birthday Mom!).  That's crazy.  Ever since our summer list got put up on our chalkboard, we've crossed a few things off of it.  We've stayed busy for the first two weeks of summer and if I've learned one thing it's this... children love water.  Puddles.  Any type of water they can play in. 
We were taking middle school softball photos and the kids thought they should play in this puddle at third base.  On a separate occasion we went to a softball game and the twins were so soaked I had to take them home in-between games to change clothes.  Fun times.  By the way, this photo if SO Bowen.  Pure ornery.
Brody has spent a good chunk of his summer days hanging out with our neighbor, Jon.  I'm not sure whether it bothers Jon or not, but Brody loves helping with whatever Jon is doing.  Brody had to put on one of Jon's hats.

He was trying really hard to do something here.  I'm not sure what, but his face cracks me up.
A couple of weekends ago we went to Omaha for our niece, Aubrey's, birthday and also our nephew, Noah's baptism.  We went to the Amazing Pizza Machine, which was awesome!!  Super fun!  And...I forgot my SD card for my camera. AH!!!  So mad.  We were honored to be asked to be Noah's godparents.  I'm pretty sure he was the cutest thing ever.
Another accomplishment this summer - Brody is free of training wheels!!  Not to compare my children, even though I'm going to compare my children, but Jenna just got hers off this spring.  I think it's a birth order thing.  Jenna overly cautious...Brody, not so much.  It took him 24 hours and he was good to go!
I'm waiting for a crash with these two! 
We are so lucky to live behind our neighbor, Emily.  She has beautiful flowers and a really nice garden.  She has lilacs, which I think are one of the best things about spring/summer.  They remind me of our house in Armstrong.
She also has peonies!  Aren't they gorgeous?!  Emily said to go ahead and pick myself a bouquet, so I did.  Jenna snapped this picture and she didn't even realize she captured a fly on the flower.
We've also had drama.  Lots of it.  Bowen thinks he should get to do what he wants, when he wants to.  That mainly includes going outside.  All the time.  Pretty much every second of the day.  It's exhausting.
We've been watching lots of college baseball super regional action!  Have you?  You know we're a baseball family.  Anyway, the kids were asking Aaron how to pitch like a baseball pitcher.  A lesson then followed. :)

Saturday morning I took the kids out to get some flowers (finally).  The place is out in the country and they also have animals.  Goats, miniature horses, pigs, cats, chicks, a donkey, peacocks, sheep...  Anyway, the owner is so awesome and took the kids around and let them see all the animals.  They had a BLAST.  The mom didn't have her camera.  Not even my phone with me. #mommyfail
We decided to spray paint the pots purple and Jenna and Brody were great helpers with the flowers!

And...more water.
Sunday was weird.  Super sunny and blue skies.  And then a shower.  And repeat.  And repeat again. 
I let the kids play in the rain because they're kids and they should do fun stuff like that!  Who cares if they had to take a shower in the middle of the day?!
Brody and Bowen are two peas in a pod.  Which is kind of scary, really...
And Blakers.  The poor kid, because of his dialysis stuff, doesn't get to take baths with his brothers and it breaks my heart.  I know it seems like the simplest thing, but he isn't able to do it.  He tries to climb in and I have to tell him no.  Today, he was in heaven!  That smile pretty much says it all. :)
We also had friends visit that have moved away from State Center!  It's always nice to catch-up.
Saturday night, we had family movie night and watched, "Diary of a Wimpy Kid: Dog Days of Summer."  It was funny.  We had popcorn and the kids had a living room sleepover.  Two more things off our list, even though I know they'll be repeated.

This week is Rose Festival, which means it's going to be a C-R-A-Z-Y week!!!

Saturday, June 8, 2013

Aaron's Appointment

If you all remember in this post here we told you that Aaron had a few issues that would keep him from being Blake's donor.  Well, he had an appointment a couple of weeks ago that I didn't blog about where the surgeon he met with said he saw no reason that Aaron COULDN'T be Blake's donor.  I tried to tell myself to not get my hopes up too much, because if I have learned anything, it's that things can change quickly.

So, we spent a couple of weeks trying to get Blake's surgeon (who said Aaron couldn't be the donor) to communicate with Aaron's doctor (who said he could).  What happened was we got an email from the transplant coordinator saying that they had received his records from Mayo and that the doctor said Aaron's case was "more complicated" than originally thought.  Note to doctors out there: don't say something like that via email.  It causes worry.

Anyway, Aaron went down Friday and the doctor mainly discussed Aaron being Blake's donor.  Or not, as the case may be.  The golden rule of organ donation is that you would never do anything to put the donor in any harm.  For Aaron, a couple of his numbers are indicating he may have diabetes later in life, which could be trouble for his kidneys.  If he only had one, that is worrisome to the doctors.

Secondly, with this weird Castleman's Syndrome that he has, in about 10% of the cases the person may have hepatitis.  We are waiting for bloodwork to confirm that Aaron doesn't have it, but obviously, we wouldn't want that passed on to Blake.

At this point, Aaron and I have full accepted that he will not be the donor.  The doctor would like to have Aaron have his lymph node removed in July of 2014 as a precautionary measure.  Aaron and I are a team in this craziness that is our life and we just really need him to be as healthy as he can be.  For now, that's the priority.  So, we continue to search for a donor for Blake.  I have some more donor packets coming, so if anybody is at all interested, please let me know.