Wordless Watery Wednesday

Just have to write...

"Write hard and clear about what hurts." 

-Ernest Hemingway

First of all, sorry about the ridiculously long absence from the blog.  May and June so far have been crazy busy, which I realize is my go-to excuse, but it's true.

I kept thinking over the weekend I would post some pictures to do a catch-up of what we've been up to.  Then, tonite, I got a phone call.  I was pulled to write.  Compelled to write.  Just knew if I write it will make me feel better. 

Let me start at the beginning.  A couple of weeks ago I interviewed the mom of a two and a half year old little boy who was fighting a rare form of leukemia.  Chris, the gal I work with, sent me a message and said, story for next week?  She didn't have to say it, but I got the feeling this story was going to be mine.  

I met with Christina, the mom, at her apartment and interviewed her and talked for about an hour.  All the while, little Jaycob laid on the couch and would get uncomfortable briefly and go back to sleep.

He has some of the same things Blake has - a port.  A G-tube.  Special formula.  Lab draws.  The whole works.  After giving her a brief background about Blake, Christina said to me, "It is so refreshing to talk to somebody who actually knows what I'm talking about."

On a mom of a critically ill child level, I could totally relate to her and feel her pain and frustrations about the situation.  

Jaycob was diagnosed 12 days before Blake had his transplant.  Just a day or two after our interview Jaycob went septic and almost didn't make it.  Sound familiar?  Since last weekend, he has been treated with antibiotics and has been at Blank Children's Hospital in Des Moines.

Tonight, my phone rang and I say Christina's name pop up.  She was calling to tell me that they found out that Jaycob had a very bad fungal infection.  When she saw her doctor walking out of the room crying, she knew it was a bad sign.  The doctor told her they didn't think Jaycob would be able to get through this because his immune system is shot right now.

What do you say?  I cried.  I kept saying, "I don't know what to say.  I am so sorry."

Christina assured me that she wasn't giving up on her little Superman just yet, but they were going to try to bring him home and keep him comfortable.  

Do you know what she said to me?  She said, "I never thought an infection would take him.  I thought it would be the leukemia.  I guess I'm talking to you because you know what it's like when your child has an infection and the doctor tells you that they just don't know if they will make it."

Yep.  Even more tears.  My heart just hurts.  I was instantly back in that hospital room at UIHC and I could hear Aaron saying to the doctor, "This is really bad isn't it?"  And the doctor's response, "I honestly don't know if he's going to make it through this."

I feel like crap that I have been through this.  But, on the other hand, if I could help one person by giving them somebody to talk to, then I guess that's ok.  I constantly wonder what I'm supposed to be doing with "this."  "This" meaning the life we've been given with Blake.  Am I doing what I'm supposed to?  Should I be doing more?  I just don't know.  I'm doing the best I can.

Friends, I ask you this.  Will you do what you're comfortable with - send some prayers or happy thoughts Jaycob and Christina's way?  I know they could sure use them.  

We never know what this life has in store and like I told Christina, miracles happen every day, but that's just the way I see it.  

 

Easiest Salsa EVER

First of all, thank you for all your encouragement and support from my last blog post!  I sure appreciate it and I probably will mix things up every once and again.

With Cinco de Mayo tomorrow, I whipped up a batch of this tonite to have in the fridge for supper tomorrow.  This is my good friend Mary's recipe that she brought over years ago and I make it all the time.  It's so easy and so delish!

Any Carlos O'Kelly's fans out there? Yep, me too!  This salsa is kind of a knock-off of theirs.  So, if you need a last minute salsa recipe, you should give this a go.  

Ingredients:

2 cans of stewed tomatoes

half an onion

half a jalapeno (play this by ear depending on how spicy you like things)

handful of cilantro (I use a lot; I love the stuff!)

Salt to taste

 Directions:  
Throw it all in a blender and blend it up. That's it!

 Taste testing encouraged!

It doesn't get much easier than that does it?  I'm all about easy! (Thanks Mary for the recipe! )

Monday musings...

This blog has been on my mind a lot lately.  I love blogging, but sometimes I don't have time (or make time) for it like I should and want to.  I've been thinking about things I'd like to change and different things I want to write about. 

As a mom of four, a set of twins, a chronically ill child and crazy schedule who also likes to workout, cook,  read and take photos, I feel like I have enough to write about to keep me busy.

Then I think, would people be actually be interested in that kind of thing?  My book recommendations.  A recipe I found and tried.  Things of that nature.  I just don't know.  Would you?  Yes, you.  I'm asking you!  So, please let me know.  Or, maybe I just keep the blog as is and keep on keepin' on.  Thoughts, ideas and opinions welcome! :)

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!

Give Kids the World

This is my last Disney post, I promise!  I just wanted to be sure to write about the place we stayed because it was top notch. :)

 

We stayed at a place called Give Kids the World, which is exclusively for Make-A-Wish kids and their families.  It was such a great, great place!  They assign you little villas with a couple of bedrooms, bathrooms, kitchen, living room, washer and dryer.  You get three meals a day if you want them, unlimited ice cream, a pool, arcade, a couple of rides and a different theme every night (Christmas, pool party, etc.).  They really go above and beyond to accommodate all families and give you as much of a vacation as they can.

There are a ton of volunteers that make the place go.  I don’t think I saw the same volunteer twice.  The very first morning we were there a gentlemen from Owatonna, MN stopped by our table and said this, “I know you parents tell your kids that they are special, but when is the last time somebody told you adults that you’re special?  For everything you do and everything you sacrifice.”

That was all it took and I was blinking back tears.  That meant so much to me; I just can’t even say and started our trip out on the right foot.

 

 The Give Kids the World Village (GKTW) just got to me.  It was kind of, I don’t know what the word it, comforting maybe, to be able to draw up your kid’s meds at a meal and nobody looks at you funny or wonders what you are doing.  Everybody else has to do it too.

 It was kind of like being in a hospital sort of environment in that you got to see kids with all sorts of different stuff going on out and about.  But, this was so much better because it was a fun place that kids and their families actually wanted to be.

 

 It was also a good reality check as these things tend to be.  I saw numerous kiddos in wheelchairs.  I saw a couple of kids that had to be kept flat on their back and were unable to move around that were hooked-up to what looked like a breathing machine of some kind.  It broke my heart.  Now don’t get me wrong, GKTW accommodates these kids the best they can with options for the water and making things handicap accessible, but I don’t know, it was just hard, especially for those kids hooked-up to the machines laying flat. 

 I looked at them and then I looked at my child; my amazing little Blake who has been through so much in his few short years.  Who beat the odds at birth, who did well on dialysis, who received an awesome kidney, who kept fighting even when that blood infection almost took his life, who has done and continues to do the things that doctors said he couldn’t do or wouldn’t be able to do.  But, there he was.  Running, jumping, laughing and doing everything his siblings were doing. 

Yeah, this situation isn’t ideal and it never has been.  But you know what?  We are pretty lucky and I was reminded just how much on this trip.

(These character pics were three of my favorites taken at Hollywood Studios, so I wanted to include them.  Hollywood Studios was awesome!!) 

 

 

Blake got one wish and it was full-filled.  We can’t say enough thanks to Make-A-Wish Iowa for coordinating everything for us.  It was a week of quality time together, long fun-filled days, laughter and a whole lot of memories made for our family and for that I will always be grateful!!

FRIDAY!

It's Friday!  Woo-Hoo!  I'm not sure why I'm overly excited about that.  Maybe it's the sun.  It's probably that and the warmth and the fact I busted out a tank top today!  Ahhh...it's the little things in life isn't it?!  Ready for consistently warm weather.

Look at that print below.  Doesn't it just make you happy?  All that color!  And it's such a good message.

 

I have a lot going on in this brain of mine right now, but I refuse to get stressed out.  So much of life is stuff we can't control and it does nothing but send our blood pressure skyrocketing when we stress out about it.  You know me, I am a big believer in things working out the way they are supposed and at the time they are supposed to. 

 Life is about positivity!  The belief that good things happen!  I've been thinking about new ideas lately.  Swirling them around in my mind and wondering if I can make things happen and be successful at it.  I'm pretty sure I can do anything I set my mind to. 

In the meantime, we have a pretty low-key weekend around these parts.  Aaron has a boat load of homework for his Master's classes.  It's prom so I need to snap a couple of photos for next week's paper.  We have a dance marathon picnic.  Good stuff like that. 

Oh...and I may also see if I can sneak in time to make a pan of these bad boys.  Oreos AND m&m's?!  Be still my heart.  (Link for recipe below)

 

lhttp://www.averiecooks.com/2013/09/loaded-mm-oreo-cookie-bars.html

HAPPY WEEKEND FRIENDS!