Friday, August 29, 2014

First Day of Preschool

Guess what?!  My babies are officially preschoolers!  They had their first day on Thursday.  We had been talking it up all week and they did great.  I was really so proud of them.
 When we pulled up, Bowen was excited and Blake was a little nervous I could tell.  Luckily, it was a staggered start, so there wasn't many kids there.  They went right over to play with the tractors, barn and animals.  Blake was putting on a good face here...
 Bowen told his teacher, "I'm not gonna cry!"  That made me laugh. He didn't either and I was so thankful Bowen was there for Blake.  Look at that smile below - Bowen was ready to go!
As I texted Aaron afterwards, "There were no tears!  And the boys didn't cry either! Haha!"  
Getting to drop them off at preschool together meant more to me than you could ever possibly know.  Every thing that seems like a small step, is really actually a huge step along this amazing journey for these two amazing boys! :)

Monday, August 25, 2014

A new Blake plan

Last Thursday Blake had three appointments in Iowa City.  It was quite the day!  Seven hours stuck in clinic and entertaining two three year old twins.  
The day started with good lab results, which is always such a good feeling!  I let out a huge sigh of relief on that one.  Our nephrologist was happy with Blake’s current state and how well he is doing.  He even went up three percentiles for heighth over the last month!  
Next up was a pediatric cardiology consult.  Blake has to have a yearly echocardiogram (ECHO) on his heart.  Standard kidney disease procedure.  Apparently there were two bright spots on his heart and our kidney doctor wanted to be sure they talked to us.  I was assuming since we didn’t hear from them immediately, it wasn’t a huge concern.
We waited an hour in that little room for the doctor to come in.  Why were they late?  Well, because they have never seen anything like this before and were researching articles.  I’m not even kidding.  Apparently, these things are prevalent in people who have had transplants.  They aren’t concerned that they are tumors or anything super terrible.  They think it could be some inflammation or some calcification or something.  They were quick to assure me that his heart function is great.  They would like to do an MRI just to get a better look at things, which requires sedation, something I’m never a fan of.  It’s looking like this may possibly happen at the end of September. 
Having fun with a flashlight waiting for the peds cardiologist. 
Next up, the one appointment I had been anxiously awaiting - urology.  Urology and the big try of getting a catheter in.  Our urologist got the catheter ready and then without trying said that thing was never going in.  My heart sank.  
She sat down and if there’s one thing I appreciate about our urologist, Dr. Kieran, she’s always straightforward and you never have to guess what she is thinking.  This is what she said, “Blake is not supposed to be able to pee like a regular kid.  I have never seen anything like this before.  I have never reconstructed a bladder like this and had someone be able to go the regular way.  I’m wondering if we could just go with it.  His labs have been good for two weeks and I’m tempted to do a couple tests, but then just let him be.  I will talk to nephrology and see if I can get them on board.”
I was speechless.  For the second time that day, I was hearing we have never seen anything like this before.  For better or worse, I had two different doctors say the same thing about Blake.  When has Blake ever fit the mold?  Never ever. 
I just got an email from urology this morning that said everybody is on board with watching things the way they are now.  They are going to run a couple of tests (urodynamics and cystoscopy) in which Blake will have to be sedated that will look at his bladder and also test the pressure inside his bladder among other things.  
I  have to admit I cried on my way to get coffee as we headed out of Iowa City.  I was all like, “Why can’t this just be straightforward?  Why is there no black and white with this kid?  Why is it always gray area?”  There I was waiting on doctors to weigh in with their opinions once again and wait for the plan.  

Then I thought some more about it and thought, because it’s Blake.  He does things his way.  He defies the odds.  He always has. You tell him what he’s supposed to do and he will just go and do it his way and prove you wrong.  That’s what this little ball of energy and fire in that three year old body does.  And, wouldn’t it be the best, best, best if all these tests checked out and he could indeed use the bathroom like a regular kid?  Normalcy.  That’s what that would be and that has always been our wish for Blake, to live as normal life as possible despite everything, but that’s just the way I see it.  

Tuesday, August 19, 2014

Buh-bye Summer; Hello new school year!

Dear Summer:

Thank you for being so good to us.  You rocked.  Seriously.  After a winter from hell, it was just what we needed. We're sad to see you go summer, but a new school year started today, so thanks.  For the fun.  For the memories. 
Signed, The Burdorfs xoxo

A photo recap mostly via my Instagram account. :)
One set of twins is nuts, two sets is just crazy!  Always happy to visit our friends the Bodammers. 
 Garage sale chairs.  Spray paint.  New-to-us kitchen chairs.
When your mom's the editor at the paper, that means attending small town festivals.  This particular weekend, the boys were lucky enough that some of the drumline kids left their drums laying around.  They were in seventh heaven.
 I promised the two oldest they could have a few friends over for a summer party since with all the hospital stays, they didn't get to have birthday parties.  Shaving cream.  You can't go wrong with shaving cream!

 Who would be crazy enough to take out four kids under the age of eight golfing?  Right, us. :)
 A stop in Independence, Iowa, on our way to the Field of Dreams.  Road trippin'.
 The kids and I headed up to Mankato solo in July to celebrate McCoy's first birthday.  New tradition: baseball and softball.  So, so much fun.  My best memories of my childhood are on a field.  If I can pass that on to my kiddos, I think I'm doing something right.
 The races!  Randomly one Friday night we went to the races in Marshalltown for the first time.  The kids' piano teacher goes because her husband races.  It was a good time!  Extra cool, they got to go to the pits after the races.
 Reading.  I did lots and lots of reading.  In fact, Jenna and I had a reading contest this summer as per our summer list.  I think I ended up reading like eight or nine books, which is a ton for me.
 Some of our summer nights consisted of things like this....
 The Blank Park Zoo.  A 80 degree day and some family time.
The Iowa State Fair!  We love to go every year.  
After back-to-school night, I had to make a quick trip to Marshalltown, so we stopped at DQ for some cherry dilly bars to take home.  Cheers to the end of an awesome summer!

 This morning was NUTS!  I'm so out of getting kids ready for school shape!  Because I'm always honest with you, I have to tell you this story.  In the midst of chaos, Jenna wanted me to do her hair, Brody was arguing with me about wearing these "fancy" clothes instead of "sporty" clothes, Blake projectile puked on the kitchen floor and I was trying to make Brody some french toast bites all at the same time.

Long story short, Jenna's hair got done, I didn't give Brody a choice on what to wear, the kitchen floor got cleaned up and we got these annual photos taken before we loaded up the mini van for school.  I dropped the kids off and headed home to get Blake's meds done for the morning.
 For some reason, I opened up the microwave and saw...Brody's french toast bites.  Brody didn't eat breakfast on the first day of school.  What kind of mother doesn't feed their child breakfast on the first day of school?  Especially the child who is constantly hungry?!  I kept waiting for the teacher to email or the school to call me about it.  Thankfully, they didn't. 
Tomorrow is a new day!  A day where I will feed all my children breakfast! :)  Here's to a great school year for Jenna in third grade, Brody in first grade, the twins in preschool (starting next week) and Aaron teaching. :)

Thursday, August 14, 2014

The Field of Dreams

One of the things on our summer list was to visit the Field of Dreams.  I had been there as a kid, but Aaron never had.  We decided to plan a surprise overnight trip to visit the movie site and then spend the night in Dubuque, where neither of us had been before.
The movie site is located on a farm outside of Dyersville.  We went there on a Wednesday afternoon, which was a great day to go.  There were people there, but not too many. 
It isn't fancy.  It is literally a baseball field that was in a movie with corn in the outfield.  The house is there, but you can't go in it. 
There's something special about the place though.  It's a place where families come together.  To play catch and take some batting practice. They actually leave a bat and some baseballs out for people to use. 
You know that line in the movie where Ray says to his dad, "Wanna have a catch?"  Yep, it makes me tear up every single time.  Sidenote:  who says wanna "have" a catch?  Shouldn't it be wanna "play" catch?  Anyway...
After some catch in the outfield, home plate opened up and we hustled up there to take some swings.

So while we had the kids hit, a dad and his two kids helped us shag balls.  It turns out that him and his family were on their way back from a 9,000 mile cross country trip in an RV heading back to their home in Pennsylvania.  The dad kept saying, "This is so cool.  This is just so neat."

The dad wanted to hit and his son was struggling to pitch, so I told Aaron to go pitch to him.  Then, the guy thought Aaron should take some swings too.
Of course if you go to the Field of Dreams, you have to get a photo coming out of the corn.  It would be wrong not too. 

Nothing's ever easy with these characters, is it?! ;)

A pre-anniversary, we're playing a sport we both love, pic in the corn.  Pretty perfect each of us is different-handed wouldn't you say?! heart melts at this photo.  My five favorites. 
Also cool was that one of the ghost players in the movie was hanging out talking to folks that day.  He was so incredibly nice!  He is very humble and told us the movie allowed the ghost players to travel around the world and he likes to give back whenever he has the chance by spending time at the field talking to visitors. 

Isn't it crazy that they get between 65-70,000 visitors a year?  I mean there's only so many months in Iowa that are doable and that there's corn in the outfield. 
Love this quote...
It was a really good day filled with lots of memories!  If I'm ambitious I'll post some photos from the Dubuque portion of our trip, but no promises. :)
BLAKE UPDATE: On a different note, Blake's labs today were stable enough that we don't have to go to Iowa City until next Thursday, the 21st!  His potassium did go up a slight bit, but that was it.  Praising the Lord for that good news today!

Also, I forgot to mention in case any of you read yesterday's post and wondered how Blake's urine is getting outside his body.  He pees.  Like a normal kiddo!  He wasn't supposed to be able to do that.  The doctors said no way.  But, as we all know, Blake never follows the rules and is always breaking the mold, isn't he?  Proving people wrong again, that's our boy!!

Wednesday, August 13, 2014

A Blakers update

For those of you who are friends with me on facebook, you know that our hospital-free streak was broken last Thursday.  While visiting Grandpa and Grandma Burdorf in Sioux City, we were forced to cut our stay about a half day short.

We noticed Blake's appendico site (the spot where we cath him to pee) was getting larger and more red/pink in color.  On Thursday around 1 PM, neither Aaron or myself could get a catheter in.  UGH.  Not a good sign.  I called urology and they wanted me to send a pic to Dr. Kieran, the urologist who we love who has been with us since the NICU.

She responded that she was sorry, but we needed to be seen. was a majorly long road trip for Aaron and Blake.  Sioux City to State Center.  Unpack.  Repack.  Head to Iowa City.  Without going in to too many details, we thought they were coming home on Friday, but they ended up staying until Saturday around 11 AM.  Blake's potassium was a smidge high and had the kidney docs worried.  Best part though:  Blake is doing so well!  Happy and active and going stir crazy in the hospital and you can't ask for much more than that!

They had us repeat labs on Monday just to be sure his numbers weren't trending in a bad direction.  They weren't, thankfully.  They asked us to try to cath Blake on Sunday and we couldn't get a catheter in.  Blake's site was enflamed and had created a "false pathway."  That simply means that the catheter isn't going the way it's supposed to.  Thanks to some steroid cream, his appendico looks like normal, but as of Tuesday, the catheter is still going down the wrong track.

So....we are having labs again tomorrow (Thursday).  This will be lab draw number six in the last eight days.  If there is anything "concerning" we will go to Iowa City on Friday to see Dr Kieran.  If not, we will see her, along with Dr. Jetton on Thursday, August 21st.  I haven't had to deal with all this uncertainty for a few months and let me tell you, I hate it.  HATE IT. 

I'm kind of frustrated with the whole thing.  I didn't think this was going to be a huge deal, but now with a procedure looming to get Blake's appendico fixed, I'm kind of freaking out.  I don't want him to start preschool by having to miss school.  I want a normal start for Blake.  Aaron will say I'm getting ahead of myself and to calm down. :) 

First things first, we need some good stable or improved labs tomorrow!  That's what I'm praying for and I know we just need to take one day at a time.  Happy thoughts!