cath update

I know I'm getting behind with blogging and updating everyone about Andrew's cath.  I was so bad on Friday I can't believe I didn't even post anything all day, except on Facebook.  Turns out, I had a good reason, which I will get to later... to say the day was exhausting would be an understatement.  But let me go in order... we'll start with the fun part!  Normally I like to end with the fun, but in this case we had to do the fun first.... (well, after his Thursday pre-op appointments)...  I'll warn you in advance... it's a long update!  But I didn't want to break this one up.

He was as big of a boy as I'd ever seen him.  Just going through the motions like it was second nature to him.  I was so proud of him!

Dr. Andrew!

He didn't even cry for his lab draw this time.  I promised him it wouldn't hurt if he sat very still and watched the TV.  When it was over, he agreed that I was right!  I don't think he could believe that he didn't even feel it.  Thank goodness!

After all our appointments we met Ga Ga, Papa and Kerigan for dinner at Texas Roadhouse.  We also stopped at Target to pick up a couple new toys for Andrew.  He has been waiting for months for the new Ninja Turtle toys to hit stores, and I have been searching for them around here with not much luck.  I found one at Walmart, the last one and I grabbed it right before someone else!  I had stashed it away for when he was in the hospital.  But I was so glad we found the other two that night at Target!  He could not have been more excited.

A sweet heart mom friend had sent an email gift card for Andrew to pick out a special toy, we were so grateful!  And I think it was definitely meant to be that these toys were in stock that night!

After dinner we went back to spend some time at the hotel.  We love to take Andrew to the hotel with the waterslide!  It is so fun.  Normally the water is ice cold, but this time it was seriously like bath water.  It was awesome!  The kids had a great time, and Andrew took to the water just like a fish!

Love this picture of daddy with his kids!  They love swimming with him- he's fun!

Kerigan was just as happy as a clam the whole time, smiling and loving the water!

Andrew went down the slide with daddy first, and then realized he could do it himself, and he never stopped all night!

I told him to stand for a picture, and the first time he stood for me he covered up his chest.  This just broke my heart.  Lately there have been a couple of times where he has not wanted his chest to show.  I think he is just getting to that age where he's maybe embarrassed about it a little bit.  We have always taught him to be proud of it, and it shows how brave he is.  But so far, he's not buying into it.

Wild man on the slide!

Then he'd take off and run right into the pool!  Ha!  His face just shows how feisty he is!

And this picture just makes me laugh.  My mom wanted to be "blurred" out, so I obliged.  But I couldn't not post this of Kerigan's face.  She decided since Bubba was jumping in, that she wanted to also.  She wasn't scared a bit!

This was her after she jumped.  Do you think she liked it!?  Ha!  I think she's all ready for our trip to the Great Wolf Lodge this weekend!

The only time she cried was the first time I took her on the slide.  I think she was just scared at the end when she went under a little bit.  Andrew kept going down so much that she was acting like she wanted to so I took her down again, and then she loved it.  Craig took the pictures, he obviously needs some camera lessons (the basics, like centering photos!  Ha!) but my girl was smiling when we came down and I had to post it!

The kids always have fun in the room too.  We brought some toys and Kerigan had a blast.  She's so funny- she loves to sit like this and roll the ball back and forth!

And the best part about hotels??  The free cookies in the lobby! (and yes, she won't go anywhere without her Cinderella shoes.)

Getting sleepy with daddy.  I love this picture of her because it just describes her "going to bed" look perfectly.  Hands messing with her hair, paci tightly in mouth, leg crossed.  Ha!  That's how I know she's ready to sleep!

After a short time she was cashed out... daddy too!  Ha!  I think she may be officially done with her pack and play.  She won't fall asleep in it.  We move her to it but she always wakes up in the middle of the night when she's in it and she's not happy!  So we always end up with her in the bed anyway.  Luckily, it's only when we are on trips.  She does great in her crib at home!

Andrew stayed up late for a special trip to IHOP with Ga Ga and Papa.  It's become a tradition before his caths since he can't eat after midnight- after swimming and a bath, he gets in his jammies and they just walk next door for pancakes (it is right next to the hotel!  Perfect!)  

The next morning came too soon and we headed to the hospital bright and early for his cath.  He reluctantly got in his robe but wanted to leave his Ninja Turtle pj bottoms on- ha!

He just stood here and smiled at me like this without me even asking him to!  So sweet!

In the waiting room he was fascinated with this model of a heart.

Papa showed up with this wheel chair and the kids had a blast in it!  We all took turns wheeling them around the hallways while we were waiting to go back.

This picture just speaks volumes to me.  When they called us back, they let both Craig and I go back with him this time (depends on who the anesthesiologists are).  We were walking in with him and he stopped, put his hand up and said "Stay right here."  For the first time, he would have walked into that cath lab all by himself.  It just made my heart melt into a puddle.  He didn't need us anymore.  But we went anyway.  Because we needed him.  I took this picture of him on the table, and his face is so brave.  We talked about how brave he was the whole time.  Afterwards he said to me, "You were right!  I was brave!"  My sweet, sweet boy.

The cath took about 2 hours, which wasn't too bad at all.  We waited right outside the cath lab in the waiting room where Andrew wasn't very far away from us.  This is pretty much how we entertained ourselves after grabbing a bite to eat...

Ha!  Is it sad that she knows how to work my phone and she's not even two??

Daddy made us all laugh with the mouth off app!  Ha!

What did we ever do without social media??  Ha!

After the cath the amazing Dr. Divekar came to talk to us.  It was so sweet, Kerigan took his hand to walk over to look at the fish.  We just love Dr. D because of how personable he is.  He is so good with kids and loves to tease, which Andrew just loves!  From the first time they met when Andrew was just a baby, Andrew bonded with him and we are just beyond blessed that this man is the one working on our son.  I already told him he better stay put or we will be following him wherever he goes!  Ha!  I am to the point I wouldn't let anyone else touch Andrew!

Basically, this was one of those times where I feel like things are the same as when we went in.  I think overall, things are improved from last time, and he was very positive that things were improved from the first time he saw Andrew at 9 months old.  His branch PA's are just very narrow, and therefore the vessels beyond are just hair-like and not growing much.  They are not able to place stents in them because they are too small, and there's no miracle medicine that can help.

Things were rough coming in the recovery room this time.  Andrew was very angry and yelling to let him out of there!  I knew the anesthesia was making him that way, but it was hard to watch.  He vomited about three times, which he hasn't done the past couple times so I was concerned.  He was just so uncomfortable.  Finally they decided to give him a little more sedation, along with a drug to help with nausea.  This seemed to help him relax and calm down a little.

So basically, he will just have to keep having caths to try to balloon the branch PA's to help with growth beyond them.  This time there was a narrowing just past the stent, which he was able to balloon to almost the same size as the stent.  This is good news, however the pressure didn't come down at all.  He didn't seem discouraged by that, in fact he said that he didn't expect it to right away.  But last time, it dropped drastically, so I was hopeful that it would again.  Another problem with stents is something I didn't even know- that tissue grows inside them, which can cause the narrowing to return.  That is why stents are not always ideal.  I discovered this when I asked why they don't just put another stent in the narrow spot beyond the current stent.  Rather than wait for it to narrow again.  So news flash for me... stents aren't a fix all either.

 Basically, it is a balancing act.  We are literally on a roller coaster with Andrew's heart.  There are many ups and downs, and we just have to take things day by day.  We have to be glad when we hear the word "stable," even if stable means not as good as it could be.  Sure, it could be better.  But it could always be worse.  And for that, we choose to be grateful.

Andrew perked up when "Perky" came to visit!

And the reason for my lack of posting... do you notice the blue curtain on the right?  Yep, that's a double room folks.  Six years of procedures and surgeries at this hospital and we've never once had to share a room.  I guess it was our turn.  They put us in a room with a crib, which concerned me right away.  Sure enough, a baby came rolling in a few minutes later.  And it screamed the entire day.  I am not kidding.  All.day.long.  Screamed.  Loud.  In my moment of madness, I did say a prayer for this baby, because I did feel bad for it.  But I also felt bad for us who had to sit and listen to it.  But especially for Andrew, who needed to rest.  I was livid that they would put a six year old in a room with a baby.  There was an older girl next door but apparently at such young ages we still have to be concerned with gender differences.  Even though there are curtains.  And our eardrums needed a break.  Seriously.  I complained enough times that they decided to discharge us, rather than make us stay all night.  This was a good thing because there was no way I was staying overnight in that room.  So they came to the room to do his echo, and took us up to X-ray.  And said good bye.

On a wagon ride to X-Ray.  Kerigan said "this is fun!"

He relaxed with Kerigan a little bit before the nurse came to take his IV out.  Luckily she was napping a good portion of the day back at the hotel with Ga Ga.  Andrew asked several times if that was Kerigan screaming.  Poor baby.  He watched about 4 movies with the volume cranked and his hearing aids out so the screaming wouldn't bother him as much.  

Once he perked up I gave him my surprise- the last Ninja Turtle toy he had wanted.  He was beyond excited.

The nurse gave him a "bath" with a shampoo cap and some wet cloths before we left since he couldn't take a bath for a couple days.  I love the shampoo cap.  Andrew?  Not so much.

Playing with all his toys while waiting to be discharged.

We went back to the hotel again for the night, just in case we would need to go back to the hospital for some reason.  Andrew wanted to swim again- poor thing!  We had to distract him, which was pretty easy.

He rested in the bed at the hotel with daddy and watched more movies.  We all agreed it was much more fun staying there than in the hospital!

The next morning, the kids had to jump on the beds!  Yes, even after Andrew had a cath the day before.  Nothing really holds him back!

My favorite part was when we were talking to Dr. Divekar and we were discussing Andrew's activity level.  I made the comment how amazing it was that he just acts like a normal kid and you would never know he was a "heart kid."  Dr. D looked at me strangely and said "He's not a heart kid!"  

What??

I was a little confused.  He looked at me and said again, "He's not a heart kid.  He just has issues."  Ha!  I love that man.  If he wants to call them issues, I'm more than happy to oblige.

And he gave us 18 months between caths this time.  So unless something drastically changes, this heart kid kid with issues won't be back in Iowa City for a year and a half!  And in the meantime, look out... because Andrew has more energy than ever!

We are blessed.

perseverance

So we went roller skating the other night...

Andrew's very first time roller skating at a real roller rink.

At first, I wasn't sure how he'd do.  Those are some heavy skates!  And lots of skills are needed...

Like balance.  Coordination.  Determination. Perseverance. 

If there's one thing Andrew's got... it's determination.  Fight.  Spunk.

He finally got brave enough to let go of daddy's hand.

And every time he stumbled... he smiled.  And got right back up again.

This little man had to have fallen over 25 times (not to mention had his fingers run over a few times when they were on the floor like this!)  And this was seriously his face the entire time.  Smiling.

He was having the time of his life.  If there's one quality that Andrew possesses, it would be perseverance.  This little boy knows how to endure stumbling blocks... and get right back up again, and continue to smile.  Roller skating was just one of the many ways he has demonstrated it.

He even did the "limbo!" (Flashback to the 80's for me!)

It might have helped a little bit that one of his best pals, Isaiah, was there.  And he is a FIRST grader.  A big kid.  And can I tell you how happy it makes my mama heart that this precious child accepts and loves our son for who he is.  Even though he's "different."  Bless his heart.  He has no idea how much that means to our family or to Andrew.

Kindergarten is coming to an end.  This has not been a great year for Andrew.  To be honest, I'm relieved he has less than 20 days left.  I haven't talked much on the blog about his year, mainly because it's been difficult and I like to try to stay focused on the positives.  But as I thought more about it, it's a positive that he's managed to persevere through many challenges that Kindergarten presented.

Without getting into many details just yet, let's just suffice it to say, I feel like this year (school-wise) hasn't been very effective.  He has shown little to no growth in the academic sense.  Many factors are contributing to this, of which there are too many to get into right now.

As you know, Andrew has a moderate to severe hearing loss (yes, it's gotten worse the past few years over time)... this greatly affects his learning.  He is a smart boy.  We know this.  How else could he come up with phrases like "MOM!!  Deal with your daughter!" when Kerigan is powering through and making a tornado of his toys.  But, at school, if he's not completely engrossed in learning, he's been tuning things out.

Important things.

His teacher and many others have been working to figure out what is going on.  We know there is a common pattern of learning disabilities and other factors such as ADHD when it comes to heart kids.  And I am certainly not saying that these are the things affecting our boy.

I'm just saying... I don't know.

His whole life Andrew has had little mannerisms that we would always just chalk up to "that's our Andrew!"  No one has ever been concerned before.  Both his preschool teachers were completely amazing, and they have both been helping us this year with ideas and thoughts, because neither of them were concerned with these things the past two years.  So all of a sudden, he's in Kindergarten, and he's at a standstill.

Another road block, if you will.

We will get through this.  Of this I am certain.  We have two appointments with specialists this summer to try to help us get to the bottom of what is hindering his learning.  I think it is definitely God's perfect timing that we are leaving our current school district and moving to a completely new school in a new place with a new teacher.  Sure, his IEP will follow him, and perhaps we will be adding back his academic goal that we excitedly but hesitantly removed at this same time last year.  I can still remember three years ago, sitting on the other side of the table at his first IEP meeting, thinking... my son is going to have an IEP.  Always knowing that we would do whatever it took to support him and help him grow and succeed, we signed the papers.

But man, it was hard.  Here I was a teacher, signing forms for my son to be served in a special education setting.  Talk about swallowing your pride and putting yourself in someone else's shoes.

I can remember sitting there in that meeting, clarifying that once we signed the papers, that it could be removed from his record at any time.  They assured us that when he started Kindergarten, he may not need it anymore.  

At that time, Kindergarten seemed like an eternity.  He still had to get through open heart surgery.  Then the dreaded thought that was never spoken...

Would he even live to experience Kindergarten?

Yes, these are the things that heart families face.  It's reality.

Today, I could honestly care less that my son has an IEP.  In fact, I embrace it.  I am grateful for it.  I now realize that the opportunities it has presented, are what's gotten him this far today.

And, by the way, he did make it to Kindergarten.  And he's more determined and spunky than ever!  So I say look out future... Andrew is on the way and it's bright!

I am confident he'll learn how to read.  He'll learn how to write the sounds he hears when he says a word.  He'll learn to add and subtract, count to 100.  These are the skills most kids his age are learning to do.

But besides that, Andrew has to learn how to do so many more challenging things.  Like learn how to hear.  How to know when to stop and rest if his heart is beating too fast, or he's too hot or too tired.  He has to learn how to focus on the most important of the many conversations and background noises that are constantly going on around him.  Just imagine sitting in a classroom with the teacher talking, children talking, the fans blaring, pages turning, pencil sharpeners buzzing, and the millions of other noises that take place in a kindergarten room on a daily basis.

He has to learn how to live.  To survive. 

And there aren't many other children in his class that can say that.

He's a true superhero.  And he's the smartest little boy we know.

We have another road block coming up next week... his cath.  We leave for Iowa City on May 9, the cath is May 10.  You may remember a couple of years ago where we were desperate for answers, and we received grim news following his cath... then last year when that all changed and a miracle took place... 

We are back to square one.  After an appointment last November where we learned his pulmonary arteries have once again narrowed, we are continuing to ride this roller coaster with confidence and determination. 

How could we not when he has taught us so much more?  He deserves nothing but our hopes and dreams for a successful cath.  So that's what we're going to give him.  We appreciate all the love and prayers you could send for our sweet boy.

This is just one more road block.

Because really, everything you really need to know...

You learn in Kindergarten.

Easter Sunday

Easter Sunday we all went to church with Craig's family.  I was so proud of my little man at church.  Normally he goes to Sunday School during church so he doesn't sit through the service.  He did great!

His sweet little hands...this is what Easter is all about.  As excited as he was about the Easter Bunny... we think he understands a little bit about what Easter is really about.

Back at Grandma's after church, the EB had left eggs and the kids had a hunt!  They were so thrilled!  He had to hide the eggs inside since there was still snow on the ground outside and it was cold!  Not your typical "Easter" weather.

Money!

Once one of them found money inside the eggs, they all took off running to find more!  Ha!

I LOVE this picture!

I love how Andrew is checking out Kerigan's stash to make sure she doesn't have more than he does!  Ha!

Emptying eggs and counting their cash!

Grandma made a red velvet cake in the shape of a bunny and had the kids all help frost it!

I think they all did a pretty good job!  And it was delicious, too!

On the way home we stopped at Ga Ga's to see what goodies she had!  Ha!  Andrew was so excited to get toys from his new favorite movie The Croods!  He wanted all the McDonald's toys but we soon realized they were not good ones this time.  When I spotted these at Toys R Us I knew he'd like them better!

And he does!

Little miss found her basket too, and I promise she was happier than this about it!

Ha!  I can't even remember what she was pouting about, probably something Andrew took away from her.  But the look on her face and the way she was standing just cracks.me.up.

Another egg hunt at Ga Ga's!  So exciting!

When we finally headed home, Andrew could hardly wait to see if the EB had left him what he wanted more than anything... when we found jelly beans by the door and a note for Andrew, he took off running upstairs to follow the jelly beans!

Trigger Happy!!!!!!!  He had been waiting since Christmas for this Skylander.  It is NOT an easy one to find so the EB had to resort to the internet.  Good thing he knows how to use it!  Ha!

I love this picture.

Meanwhile....I caught her in action, picking up every last jelly bean and stuffing them all in her mouth at once!  Real lady like Kerigan!  Ha!

By this time we had been in the car a good portion of the day, had stopped at 2 different places and she was about done.  Bow ripped out of her hair, pretty outfit crumpled... but she was happy about her Easter basket from EB!!!

How could she not be when he brought her Minnie Mouse light up shoes and Doc McStuffins??  She was in heaven!

We had a very special Easter with all our family.  And the best news of all... Jesus has Risen!