Prayers for labs

I wanted to let you know that we need some prayers for Mr. Blake.  Last week, he was supposed to have his monthly lab draw.  For those of you unfamiliar, he still has his port up by his left collar bone that the nurse has to access each time.  Last Tuesday when we tried she got a pull back of blood and then it stopped.  She manipulated the needle, got a pull back of blood and then it stopped.
We tried another needle and we couldn't get any blood.  After that, we were out of needles and had to wait for another shipment from Iowa City.

This port has been with us since 2013, which is super awesome.  It also makes me scared that it has finally crapped out on us.

We have repeat labs to try again tomorrow (Tuesday) morning.  If you would, please pray and think positive thoughts that it works.  If it doesn't we'll be heading to the hospital locally to get some blood thinning stuff put through the port to check and see if it's clotted.  If that doesn't work, I'm assuming we'll be headed to Iowa City, which nobody wants to do.

Thank you all in advance and I will keep you posted!

The way I see it....

Blake's appointments

I haven’t talked a lot about Blake in my column lately and how he’s doing because there hasn’t been much to say.  A good problem for sure!

Last week Blake had labs on Wednesday here at home and the results  were mostly good except his kidney function numbers went up (that’s  bad) for the second month in a row.  When I say they went up, it  wasn’t by a lot.  That being said, my mind works into overdrive that  it’s trending in the wrong direction and that he’s going to have to have surgery and we’re going to have to start cathing him again, etc., etc, etc.  Yes, I know I have an overactive mind.  It’s not my  best quality.

Blake had his six month check-up in Iowa City last Friday.  On the docket for the day was an ECHO for his heart (done yearly and standard transplant procedure), an ultrasound on his kidney and bladder (done every sixth months and standard procedure) and consults with the urologist and nephrologist (kidney) doctors. Aaron teases me that I’m “Miss Expert” at the ultrasounds for his kidney and bladder.  I can’t help it.  He’s had so many and I can  generally tell when something is wrong.  He texted me afterwards and asked how I thought things looked.  I told him it didn’t look like a ton of fluid around his kidney (great news), but there was a weird  floaty thing in his bladder that I had never seen before.  I was kind of puzzled.  I think Aaron was doubting me.

After the ultrasound we met with urology in which Dr. Storm said, “kidney looks stable, but there was this strange thing in his bladder that we aren’t really sure what it is.”  While I’m not happy I was right, I kind of did feel like a semi-expert at that point.  Long story short - the doctor had a couple of theories, but no definitive answers as to what it was.  He said we could open him up, but nobody wanted to open that can of worms since it appears to not be doing any harm.  We’re just going to keep an eye on it.

Dr. Jetton, our kidney doctor, was really happy with how Blake is doing.  The two best parts of that appointment were that she said we would shoot for the summer to get his g-tube (feeding tube) out of his   stomach and she knocked two more meds off of his daily list.  At the worst of things we were at 20 plus, so to be down to five meds just twice a day is so, so great!

It’s funny how some things change and some things stay the same.  I was hit with that hospital smell as soon as I walked in, along with the hustle and bustle of people heading to and from appointments.  The tired, stressed out looks on family member’s faces was all too familiar. On the other hand, I have a five (almost six) year old, who hops up to get his blood pressure taken, who doesn’t need anesthesia for his ECHO, can hold still during his ultrasound and can answer on his own the questions he was asked by doctors and nurses. I was reminded how much I have to be grateful for with those good reports, especially with all the sickness I was confronted with.  I was also reminded to never take a single good day for granted, but 
that’s just the way I see it.

Three year kidney-versary!

November 5, 2013...

 

  

Saturday, November 5th, we celebrated Blake’s three year kidney-versary!  It’s strange to think that it has already been three years.  On the one hand, it seems like yesterday and on the other, it seems like this is how it’s always been.

As you can see, the little turkey is doing well (knock on wood).  He is ornery and full of energy!  

The things you don’t realize until you have crappy kidneys is that they help with your growth.  Blake used to be, in his dialysis days, below the tenth percentile for length and weight.  Right now, he’s up and over the 80th percentiles for both of those.  I mean...wow.

Not only has his kidney been a rock star, but he still (knock on wood) continues to pee on his own.  

There are so many miracles in this story we call life.  The miracle that he even survived birth when he had a 90% chance that he wouldn’t. The miracle that he did so well on dialysis and really took to it.  The miracle of his donor, a complete stranger, that just wanted to help someone.  The miracle of minutes on the scariest day ever, when those doctors did everything they could with the clock ticking and saved his life.  The miracle that he is not only here, but thriving.

My prayer for my sweet boy is that he keeps beating the odds, never stops fighting and does it all with that same smile on his face, but that’s just the way I see it.

#keepfightingblake

Tonsils and Adenoids Out

Blake is officially tonsil and adenoid free!  Yay for that!  We had pre-op appointments yesterday and he was kind of coughing and had a runny nose and I was worried they would cancel, but since his tonsils were so huge, they were pretty adamant that we had to go through with the surgery STAT.

Blake was second case this morning and went in about 9:45 AM.  I felt terrible because he's older now and so darn smart.  He listens to what doctors and nurses say and he knows that maroon scrubs and green scrubs means surgery.  When he heard or saw something scary he would start crying.  It's terrible and pulls at my heart. 

 Aaron dropped the other three kiddos off at school and then came down with us for the day.  I was so glad he was here.  We met with the surgeon and the first thing she said was, "The surgery went smoothly."  *BIG EXHALE*  She did say that the nurse anesthetist, who's been on the job for 35 years said Blake had the biggest tonsils he had ever seen.  That's right, in 35 years.  Blake is #1.  Because, it's Blake....

The surgeon was pretty shook up about how obstructed his airway was.  She was very thankful that they fit him on the schedule so soon.  She said that if it would have been two more days he probably would have needed something to help him breath because the airway was just THAT restricted.  Scary to think about, but man am I thankful that Dr. Zepeda was adamant about getting those tonsils out so soon!!

After a long three hours in recovery, we got to go down to the regular floor.  He was drinking water and sprite and him and Aaron played play station together.  Then, he just slept and slept and slept, which he needed because he was having a heck of a time breathing at night.  

I went down to get something to eat and the smell of coffee from the Java House hit my nose and I looked around at the bustle of people around me and I'm telling you, it's like we were right back to where we were a couple years ago.  Like we hadn't had a two year break from this place.  It was kind of a weird, out of body experience sort of thing.

The first round of testing came back today and everything was negative, which is good news!  The scary stuff will take another week, so we're praying those are also negative.  

I just wanted to take the time to thank each and every one of you who sent me texts, facebook messages, snapchat messages or called to wish us luck and see how things went today.  You guys are the best.  I know you're thinking I'm just saying that, but I'm absolutely not just saying that.  I mean it from the bottom of my heart.  We couldn't get through this stuff without all of you.  Thanks for riding the rollercoaster on this journey with us!

The plan as of 9:16 PM tonight is to go home on Saturday, so let's hope Blake cooperates and sticks with the plan! 

#keepfightingblake

#builtblaketough

Dance Marathon 2016!

Iowa State's Dance Marathon was at the end of January.  Without a doubt, it is our absolute favorite day of the year!  At the beginning of the week we had to start counting down how many "sleeps" we had left until the big day.

Dance Marathon is neither a dance nor a marathon, but a celebration of LIFE!  For 12 hours, these students stand "for the kids" and raise money for the University of Iowa Children's Hospital.  This year, they raised over $362,000!  That does so much good for families just like ours. 

 This year, I thought I'd do something different for my post.  I thought I would ask everybody in the family what their two favorite things were about dM.  Here goes....

Jenna - 1. The morale dance!  Everybody learns it at the beginning of the day and it is done at the top of every hour.
2. Playing laser tag and doing the inflatables.

 Brody - 1. Playing with the college kids
              2. Power hour - this is the last hour of dancing.  There are glow sticks and tons of dancing and it is CRA.ZY.  I'm with Brody, it's awesome!

 3. Blake - 1. Hanging out with Nathan (our new family contact) and his girlfriend, Becca.
 2. The army inflatables

4. Bowen - 1. The morale dance (you can youtube this to see what I'm talking about).

 2. The game room (see above and below).

5. Aaron -  1. The hypnotist

 2. Seeing the "reveal" for the first time this year!  That was at the very end when they let everybody know how much money was raised.

I'm probably going to list more than two because I'm the blogger, so I can make my own rules. :)

 6. Jamie -  1. Power Hour

2. Seeing all the dM alumni

3. Connecting with other families (there are a few moms I've become close to and we love to catch-up).

 4. Hearing other miracle kids' stories

5. Having Steph and family with us. It means so much to us that they are now part of our family.

 

 6. And this is my favorite, hands-down....

Last year and this year we had the honor and privilege to share the last family story of the night.  It's a lot of pressure because everybody's tired and you're supposed to be super motivational.  I don't talk, Aaron talks.  The whole day I harass him with suggestions like, "You should talk about this..." Or, "Make sure you don't forget to say something about that...."  I make him nuts.  I know I do.  :)

 

Here's the thing though about Aaron.  He nails that speech.  I mean, he hits a home run out of the park.  He has the college kids laughing and crying and cheering.  I am so, so proud of him how he can convey our story to these dancers.  

One funny he told during the speech I have to share.  He was talking about me carrying the twins 37 weeks and then being induced.  He said both twins were good-sized, 7 lbs. apiece.  Aaron then proceeded to walk over and high-five me.... :) :)  

Another year over and more memories made.  More funds raised for a cause near and dear to our hears.  Thank you dancers for inspiring me.  Thank you families for sharing your stories of hope.  We feel so incredibly blessed to be part of this amazing thing called Iowa State's Dance Marathon!

Super great news!

Blake had an appointment on Monday in Iowa City and since Monday is my "paper day" Aaron took Blake down.

The first appointment was an ultrasound of Blake's kidney and bladder and a consult with urology.  Dr. Storm said everything looked stable from six months ago and to keep on keepin' on.  Aaron commented how great it was that he was able to pee on his own.  Dr. Storm apparently just shook his head and said, yet again, "But he's not supposed to be able to pee."

There are some things you just have to roll with.  Don't question it, just be glad.  Be thankful. 

Blake also had to have an iron infusion and meet with Dr. Jetton.  Dr. Jetton thought all looked well and she made just one med dosage adjustment.  She also said Blake didn't have to go back to see her (as long as all is well) for SIX MONTHS.  SIX MONTHS!!

When Aaron told me that I pretty much teared-up.  For a kid who could barely stay out of the hospital for 48 hours, SIX MONTHS just blows my mind. Happy heart for this mama!

The Green 5K

Way back in August, we went to North Liberty to participate in the Green 5K, a 5K that promotes organ donation.  It was two years ago at that run that we met Steph and family for the first time ever.  It was two years ago that we were anxiously awaiting her testing to see if she would get to be Blake's donor.

For obvious reasons, this run is near and dear to our heart.  It literally was a life-changing day for us.  Not only that, but the guy that is in charge of the run received a kidney from his mom.  Before the race, he always talks about his mom and about the life he's gained because of organ donation. I cry.  Every time.  Every single time.

I look at Blake and I think, they didn't think he'd make it past birth and look at him.  His life that's he's gained because of Steph's gift.  Getting to do normal kid stuff.  I can't put into words what that feels like.  Blakers is my little inspiration.  I love this pic that Steph happened to get before the run.

They have a Garden of Life.  Pictured are living donors, deceased donors and recipients.  They each say a little something about the person on the sign.  Again, it is way emotional for me.  

 

 The race itself wasn't too pretty.  Aaron and I were S-L-O-W, but we did it and that's the main thing.  Our friend, Jay, ran it too, but he's super speedy and I think he finished third or something really good like that.

 One of the things I like about this race is they do kids races based on their age.  Bowen LOVES to run and he was super stoked to do it.  Blake has this thing where he hates to be the center of attention, so he didn't run.  Bowen won his age group!  So did Brody!  And Brody did it with one foot.  Seriously, isn't that the strangest picture ever?!

Jay and his buddies

 All the kids were given medals and ribbons after their races.  Yes, even Blakers got one.  Probably because he's so cute!

 

I snapped this photo of Steph and Blake when we got back to the house.  I love how much Blake loves Steph.  I love how he knows he has Steph's kidney.  I love that we are all bonded for life. :)

The way I see it...

Blake Scare

Blake had labs a couple of weeks ago.  Everything went as well as could be expected with the accessing of his port and drawing blood.  They took a lot of blood and I hate that, but there was a lot of labs that needed to be done.

About two hours after our nurse left, she texted me his creatinine (kidney function), which she always does.  She said it was 2.1.  Normally at Mary Greeley it is 0.6 (which is 0.4 at UIHC).  Let me tell you, that might not sound like a big difference, but I assure you that it is.  0.6 is beautiful and right where we want it.  That 2.1 number means Blake's kidney is functioning at about 40%.  That's terrible, obviously.

As is my personality, I went into total panic mode.  I texted Aaron.  I made a mental list of all the things I would need to pack for Blake and myself.  I was trying to figure out what I would take for food and drink.  I was mentally figuring out the week and how I would get Bowen to and from preschool.  I was thinking of what they'd do when we'd get to Iowa City - re-access his port, draw labs again, ultrasound on his kidney/bladder, probably a biopsy on his kidney and they might give him some steroids thinking his kidney was in rejection.

YES, yes I know that I may have a problem, but I've been down this road before and I feel like a seasoned veteran.  For the record, Aaron was all calm and reassuring and saying he didn't believe it because Blake was acting fine.  I kept thinking, how would we know?  You can have problems with your kidney and not have a clue about it!

Anyway, just to be sure, I called over to our intake nurse and left a message.  She called me back.  I explained the situation and asked her to double check his creatinine.  I could hear the rustle of papers because there were so many labs drawn she couldn't find the sheet with that number.  What felt like a couple of days later, she said, "I have no idea where I got that 2.1.  His creatinine is 0.6."

I admit to you that the amount of relief I felt consumed me and I did indeed cry some happy tears.  The nurse was apologetic and I assured her as long as she was wrong, I didn't even care.  I think that little episode took two years off of my life.  Whew!  I guess it goes to prove that sometimes, mistakes can turn out alright, but that's just the way I see it. 

The latest on Blakers

Ok, I'm really late on posting about our latest doctor's appointments in Iowa City and if you're friends with me on facebook, you've probably already heard my summarized version of them.  However, I wanted to get down on the blog here our good news x2!  

Oh...and these photos?  They have nothing to do with our appointments, I just liked them a whole bunch and wanted to add them to this post. :)

 A couple of weeks ago Blake was "lucky" enough to have an appointment on Friday AND on a couple on Monday. 

 Aaron took him down on Friday for an orthopedics appointment.  It had been a year since our last appointment.  They were confident that Blake's bowlegs would straighten, but worse case scenario was surgery where they went in and put plates on the outside of Blake's knees.  Ummm...not excited about that. 

 After an x-ray of Blake's legs, the doctor came in and compared this year's to last year's.  Aaron said the difference was amazing!  The doctor said Blake was good to go and we DIDN'T NEED TO SEE ORTHOPEDICS ANYMORE!!  WOO-HOO!!

 Monday was urology and nephrology.  I'll be honest, I was kind of nervous about the urology portion of the appointment.  When we were inpatient in May, they said his hydronephrosis (fluid around kidney) had increased since the previous ultrasound. :( 

 During the U/S, I quickly glanced at the screen and thought the fluid looked better, but I couldn't be sure.  I've seen so many of those things I can kind of tell if things look super crappy. In meeting with Dr. Storm, he thankfully confirmed that Blake's hydronephrosis was improved!!!

 I was sooooo happy and relieved!  Since Blake is still peeing well like a regular boy, we can keep on keepin' on.  Yay!!!

 We saw Dr. Jetton next and as he was playing with the bed, moving it up and down, standing on top of it, grabbing the blood pressure cuff and messing with the water in the sink Dr. Jetton said, "I see he's lacking in energy!"  haha. 

 She didn't really have anything else to say other than she was glad that for another month Blake didn't give her heart palpitations. ;) 

 All in all, two days of appointments with lots of good news.  Thankful heart. 

 That's the latest.  We want to thank Mother Nature for the six inches of rain she sent our way so my kids could have so much backyard fun!

Blake and his clot

Yesterday we had a late appointment in Iowa City.  I hate late afternoon appointments because they are never on time, but at the same time, I don't want Blake to have to miss preschool, so for the time being, late afternoon it is!

I'm not sure if I've ever blogged about the blood clot they discovered in Blake's leg following him going septic?  If so, just skip this part.  Anyway, they discovered the clot one of the million times we were in last year and it was due to one of the lines they had in his leg.  I had to give him blood thinner shots every day for awhile and then after some bloodwork hematology said we could stop the shots and then just do vascular u/s checks every few months. 

  

Well, yesterday was a vascular ultrasound to check his right leg.  Normally Blake cries when we start and then settles down.  Yesterday, no big deal.  He held my hand and kept an eye on the guy doing the ultrasound.  He even told the guy a couple of times that the gel was too hot!  

Following that, we had time to burn between that 3:30 PM check and our 4:40 PM consult with the hematology doc.  So, we did what we always do - visit our friends in peds dialysis!  That bunch is truly the best.  We love them like family and always say hi every chance we get!

 Waiting for the doctor is crazy town with two ornery four year olds.  They: wrote on the chalkboard, gave each other rides up and down on the bed, looked at each other's tonsils, in each other's ears, pretended to scan each other at the computer, turned the sink on and off a million times...  Well, you get the point.  I was willing the doctor to hurry up. 

When she got there she had great news:  Blake's been off his blood thinner shots for a year and his clot hasn't changed and appears stable SO WE NO LONGER NEED TO COME BACK FOR ANY MORE FOLLOW-UP APPOINTMENTS!!!  Are you sensing my excitement?  The doctor said and I quote: Cross this doctor off the list.  Um, happily!  :)

 The new children's hospital is coming along nicely.  It's set to open in 2016 and we can't wait.  It was a source of distraction when we were inpatient and still is pretty neat for the boys to look at every appointment.

Here's the thing about having a chronically ill child I decided on the way home.  You learn quickly that you have to celebrate the big stuff, but also the small stuff.  You don't take things for granted. Ever.  Ever, ever!!  Blake's labs have been good for over a year, but I still get sick to my stomach when I call for results.  When I hear the news, I still to this day get so happy.  I don't think that will ever change.

So, today, we are celebrating getting to cross the hematology department off the list.  Yay for that!

Make-A-Wish!

Is this thing on? *taptaptap*  OH.  Hi.  It's me.  Long time, no blog. Sunday night we were laying in bed and I said to Aaron, "Do you realize I haven't blogged in over a month?!"  He said, "I noticed that..."

Well, here I am back at it.  Time just gets away from me I guess.  That being said I think this is a great time to tell you some really big Burdorf news.  I've been holding this one kind of close to my chest because I wanted to have official paperwork in-hand before I shared it.

Here goes...

BLAKE GOT HIS WISH GRANTED THROUGH MAKE-A-WISH AND WE ARE HEADING TO DISNEY!!!!

Yes, I am indeed shouting at you with all of those capital letters. ;)  It's just that we are sooooo excited! We fly out on Monday from Des Moines at 6 A.M.  Luckily, Make-A-Wish is so awesome they are paying for us to stay in a hotel right across from the airport so we don't have to get up at 3 AM to leave.  We get back on Sunday, March 22nd.  

There is a resort called Give Kids the World that is just for Make-A-Wish kids and their families to stay.  They provide you with a villa to stay in, meals, and a slew of activities (horseback riding, swimming, fishing, unlimited ice cream eating!).  We get passes to Disney, Universal Studios and Sea World.  Plus, Blake told the MAW people he liked baseball, so we got tickets to the Braves vs. Yankees spring training game at the Wide World of Sports.

The kids are excited.  I'm excited.  Aaron is excited.  I'm just so happy for the kids!  Every time I think of last year's five months of separation and never-ending cycle of hell, I know that these four kids deserve this and are going to have the time of their lives! 

Did I mention that this Saturday we also have our annual Burdorf Birthday Bash?!  Yep, family will be at our place in full force and then we leave the next day!!  Crazy town, but we wouldn't have it any other way. :)

TOMORROW!

TOMORROW is our favorite day of the year - 

Iowa State's Dance Marathon!

I realized in looking back that I never blogged about last year's dM.  Probably because Blake was in the PICU and I took the other three.  It was hard to be there without Blake and Aaron.  Blake is the reason we are a part of dance marathon.  I remember thinking, this sucks!  Blake should be able to be there.  But, at the same time I thought, this is why these awesome college students dance for kids like Blake, at the University of Iowa Children's Hospital.

My biggest memory of dM 2014 was when they announced the families at the beginning.  At the last minute, I talked to Aaron about possibly face-timing with each other and holding up our iPad when we walked through the chaos that is the college students and the start of dM so the students could see Blake's face via the iPad.  It is a moment I will never forget.  I think if I see a movie reel of my most impactful life moments, this will be in there.

They announced us and up walked Jenna, Brody, Bowen and me holding up the iPad.  I panned the whole audience and the crowd went crazy and got so loud.  I couldn't hold back the tears.  Then, from the back I heard a, "We love you Blake!" (it ended up being from one of Aaron's former students and ballplayers!).  I was crying and as I looked around I saw so many students crying too.  It was just...one of those things.  

Here is last year's highlights.  If you have time, you may see a few familiar faces in it.  If you watch nothing else, be sure to watch the last 30 seconds. ;)

I have FOUR kiddos (and maybe me too!)  that cannot wait for tomorrow to get here!!!  

The way I see it...

A good report!

We had a great day in Iowa City last Friday!  I just felt like everything was going to be ok.  The sun was shining on the way down, I sent up a few prayers and I was just overcome with a huge feeling of positivity.

We started the day with an ultrasound of his bladder and kidney.  I feel like I should be able to read those things by now, but I’m certainly no expert.  I do know that I didn’t see any huge black masses, which is bad.  That means fluid and I have seen that awfulness before.

From there, we went to check his blood clot.  I just know when they light it up and there’s blue and red colors, that’s a good thing.  It means there’s blood flow.  I’m pretty scientific about my explanations, aren’t I?!

Then it was time for the urologist.  We had to see the resident first and he said he thought everything looked, “stable.”  I was slightly encouraged, but knew he didn’t have the final say, Dr. Kieran did.
Dr. Kieran came in and said his hydronephrosis (fluid around kidney) was stable to improved.  RELIEF!  I almost cried and I’m not even kidding you.

I love this doctor’s sense of humor and she just went off on a tangent that went something like this, “I don’t know how this could be!  I don’t know why he is able to pee.  He’s not supposed to be able to pee!  Maybe it’s because we used his ureter in the bladder reconstruction?  I don’t know.  This whole thing is just unorthodox, but I guess Blake is unorthodox, so let’s just go with it until his body tells us otherwise.  And I’m just going to say it, I don’t want to see you for six months.”

There was so much goodness in her rambling, I can’t even tell you.  I feel like maybe someday when she’s teaching her classes, Blake will be that one crazy urological case that she talks about.
From there, we headed for his iron infusion and to hear what hematology had to say.  That doctor said everything looked stable as well and unless he has another surgery, they would schedule a follow-up for six months.

Random selfie with my cute photo-bomber in-between appointments

Our kidney doctor couldn’t believe how tall Blake has gotten.  He is currently in the 70th percentile for height.  He used to be in the fifth percentile.  Blake is working his way up that growth chart.  Our doctor always used to say that if you give Blake a good kidney, eventually his good height genes would kick in and sure enough, she was right.

We are still doing labs monthly, but we are now seeing the kidney doctor every two months.
I think I was so emotional on Friday because I was thinking what kind of state Blake was in a year ago.  I mean, what a weak, sick, full of infection after infection kiddo he was.  And, here he was getting certain appointments spread out to six months!  Six months.  I can’t even explain to you how that feels.  After everything we have been through, it’s the biggest feeling of happiness and progress for that kid who has been through so much in his short life.

Slowly, but surely, we’re getting to a place I never thought we’d be and feeling so incredibly blessed to be here, but that’s just the way I see it.

 Blake picked this red nose out of the treasure chest after his infusion.  I asked him if he could give me thumbs-up for his good day and this is the awesomeness that he gave me. :)