Happy 5th Birthday Connor!

Connor turned 5 today and it's a day to celebrate for sure!  Here are 5 amazing things about our sweet boy.

Pure Joy

As you've likely seen through our posts, Connor has this pure joy about him.  He is such a happy kid (and trust me, we couldn't always say that).  He is almost always happy.  And when he's not?  That's okay.  None of us are happy all the time, so I wouldn't expect him to be happy ALL THE TIME either.  

 

I love driving him home in the afternoons and when I think he's asleep hearing him just start cracking up laughing.  We always ask him what jokes he has.  

I love his joy.  It's contagious.

What He's Taught Us

Connor has given me many, many lessons these past five years:

1. It's nice to have expectations, but don't get too crushed if things don't pan out the way you want them to (I'm looking at you Halloween 2014).

2.  Plans are nice, but again, don't get too crushed if they don't work out.

3.  Keep me happy.  That means if I'm happy, you don't really need to mess with me...

4.  Live each day to your fullest.

5.  Play all the music (especially Pandora's Toddler Radio).

6.  Don't forget to smile and laugh.

7.  Even when I'm sad, sick, upset, not quite myself, etc.: I'll always come back to being your happy and sweet boy.

I know I could go on and on, but I'll stop there.

Strength He Exudes

I have to say, and I've said it many times before, Connor is my hero.  He is so stinkin' tough.  Way tougher than I am.  

I remember taking him for a routine eye appointment in November 2016 and his eye pressures being alarmingly high.  That was on a Thursday evening.  

They gave us a prescription and wanted us back in the office the next morning.  His eye pressures were checked and they wanted to see us again Monday morning.  

This video is from Monday night...the night before surgery.

On Tuesday, we had eye surgery.

Connor the next day getting his pressures checked again.

Why do I mention this surgery, when he's had other ones?  Did you watch that video?  How was Connor acting?  Connor's eye pressures were extremely high.  Abnormally high. Get this kid in for surgery as soon as we can high. 

As his doctor put it, if our eye pressures were that high, we would be absolutely miserable.  Connor?  Not at all.  

Another point to prove it (as if you didn't know already how tough he is).  The video below is the day of his feeding tube surgery.  Not only did he get his g-tube, he had the following done: 4 teeth pulled, Nissen fundoplication, bronchoscopy, and ear tubes.

I'm pretty sure I wouldn't be that peppy the night of a major surgery. 

I am in constant awe at how tough he is.

Progress Made
While there are clearly many things that Connor cannot do, and it's so easy to get bogged down in that thought process sometimes, he has really made some great strides.

He has grown (a lot).  Check out the photo change below!

His personality has come a long way.  I know most babies cry a lot, but it just seemed never ending sometimes with Connor.  It's so nice to have such a happy boy.

He has definite likes versus dislikes.  Particularly with music...there are some songs we have to give a 'thumbs down' to on Pandora and others that he loves. 

He recognizes voices and will smile and get super excited with certain ones (I'm looking at you NaNa).

He has a sense of his surroundings and knows what he wants.  He's okay being in his chair at school, but at home, he knows he has other options that he would prefer (like his mat or his crib), and he won't hesitate to fuss at us to take him out of his chair.

Connor moves all over his mat in his own little scooting method.

Personality
This is kind of a repeat of what I've already said, but he really has the best personality.  He knows exactly what he likes and what he doesn't (and he won't hesitate to let you know he doesn't like something). 

He's okay with trying new things, but he's perfectly content to just do what he normally does.  He tried out some kinetic sand and chocolate mousse for his birthday.  Check out the videos!

He loves being around people, noise, and chaos (I think he finds weekends with us to be quite boring).

We are so very blessed to have Connor in our lives and I am thankful for not only every year we have with him, but for each and every day.  Happy Birthday sweet boy.  We love you so very much.

Last Day of Being 4

Connor turns 5 tomorrow.  Let me preface this post by saying it's going to focus on some reflective, not so cheery things.  If you want positive and upbeat, visit us again tomorrow :)

That doesn't even seem possible. I know that's a cliche thing every parent says, but it just seems so crazy.

I will say that the first 2 years were crazy.  I'm talking cray.  Those years definitely felt like a year had passed.

But now?  Time really is flying.

I found myself reflecting on the way to work this morning about what a whirlwind it's been these past 5 years.  I found myself getting emotional too.  Not just because he's turning 5, but because of how utterly different these first few years have gone.  Here are 4 things I've thought about today (and many, many other days!)

Expectations
When I look at these pictures, I can't accurately describe how it makes me feel.

You see, these pictures were taken right was we headed out to the hospital shortly after my water broke.  We had no idea how much our lives would change in a few hours.  

We packed minimally for what we assumed would be a routine delivery. We had no idea it would be over 3 weeks before we brought our son home (and before we came back home).

We were nervous, excited, anxious...all of the thoughts new parents-to-be have.  

If you're new to our journey, we did not know Connor would be born with the issues we had.  We were told to expect a healthy 7-7.5 lb. baby boy.  Our world was rocked to its core the next morning.  

Those expectations of a routine labor and delivery?  Totally out the window.  If you had that experience, be grateful for it.  It is unbelievably difficult to leave the hospital without your child.  

It is painful to watch your son be loaded and sent off to a totally different hospital for their amazing services.  

It is challenging to juggle holding an infant with wires, probes, and monitors attached to his body.

Even though our experience was not at all how we expected, I am grateful for it.  I am grateful for the medical technology available that helped us and my son.  I am grateful we, and our parents, live so close to MUSC.  I am grateful to know that we've gotten through tough things before.

Twinge of Sadness

While I am a pretty positive and upbeat person (hello cheerleader Bonnie!), there are definitely times and moments where I can be sad.  There are obvious ones, like today when I reflect on how different things are than what I thought they would be, but there are also times where it hits out of nowhere.

Changing his sheets and seeing the sporty dogs.  Knowing that Connor's body currently won't let him do the things most boys his age do.

Realizing earlier this school year that if things were different, Connor would be at my school in CD.

Seeing things like 'babies don't keep,' 'please don't grow up,' etc.  I know that no parents mean these things and that all parents wish their little ones could stay little forever, but please embrace the life changes that are happening.  I'll get to this a little more with my last one...

Sorrow for his Struggles

He doesn't realize that he's got it way tougher than most kids.

He doesn't realize that other kids can do things he can't (for this, I am grateful.  I am so, so, so very grateful that he doesn't realize he's "different"...he just does his own Connor thing.)

He doesn't realize that most four 5 year olds are running, jumping, playing, reading, talking, eating, drinking, etc.  I could go on and on.

This sorrow is something that we feel as parents that he has to struggle.  But you know what's great?  Connor doesn't know it and he just tries his best every single day.   I have to say, and I'll probably say it again tomorrow, Connor is my hero.  He is so stinkin' tough.  Way tougher than I am.  

Timeline

As a parent of a kid with special needs, this is probably the toughest thing.  I won't go further into this because it's really very personal and emotional, but it's something I think of more often than I want to.

So, there you have it.  4 things I've thought of today on my sweet sweet boy's last day of being 4.  I am honored to be Connor's mom and grateful for the joy he provides us each and every day.

Stay tuned tomorrow for a much more upbeat and positive post! 

Feeding Tube Awareness Week 2018

Wow, it's crazy I haven't posted since early October of last year!  That's good news though :)

To finish out Feeding Tube Awareness Week, I wanted to write a post to cover some other loose ends about and related to Connor's feeding tube.

Kind of Feeding Tube
I just realized I've never discussed what kind of feeding tube Connor has.  Did you know there are different kinds?  Connor has a g-tube, which means his food goes straight into his stomach.  There are different kinds of g-tubes, but he has the AMT Mini One.

Supplies
Connor gets medical supplies shipped (to him!) every month.  We get a months worth of feeding pump bags and two connectors.  We also get a new g-tube button about every 3 months (unless one pops which has happened before).

Regrets
I've talked a lot about how much I love and appreciate Connor's feeding tube.  But I do have one regret about it: that we didn't get it sooner.  We were being pressured by several different doctors for a while about getting a feeding tube, but we were very reluctant to do it for several reasons:

• Connor enjoyed eating.  You could sense his body relax and it would calm him down.

• Getting a g-tube is surgery.  And a pretty major surgery.  Much more so than say ear tubes.  Don't get me wrong, I know that is a nerve wracking procedure for most parents, but it's also an in and out surgery.  This surgery would require a hospital stay for many days.
• Tummy time.  Connor is not able to sit up, crawl, stand, walk, etc.  His surgery was prior to him getting a wheelchair so he spent his days on the floor for the most part and he loved it (he still does).  Tummy time was HUGE for Connor and we were worried what effect having a g-tube might have on that.

I'm sure there were more concerns we had, but those were the major ones.  It took this for us to finally pull the trigger and decide he needed one:

 Getting a breathing tube put in at our pediatrician's office...crazy that Connor's breathing relied on the paramedic squeezing that bag.  I distinctly remember telling him through tears not to stop.

In the PICU

Just looking at these pictures brings back a flood of memories and a very, very scary time in our lives.  I remember talking crying to Matt on the phone in our pediatrician's office while they intubated Connor and Matt asking me if he was going to die.  It was awful.  I am getting emotional just going back to that time and it's something no parent wants to experience.

I bring this up because this is what it took.  I wish we hadn't waited for it to come to this point, but hindsight is 20/20.  The first night Connor was in the PICU we were talking to his nurse and the feeding tube came up.   I will never forget what she said about the parents she knew: "100% of parents don't regret it and most wish they had done it sooner."  She also told us that if he had had one, and had been getting the proper nutrients he needed, he likely would have never gotten that sick.  

We signed the paperwork and the surgeon even visited us while he was in the PICU to discuss it.  Connor needed to be well for the surgery to happen and it took SEVEN tries to finally get his surgery done.  The above pictures were taken in October.  Connor's surgery didn't happen until June.  It was crazy...he would get sick right around surgery time and we eventually had to quarantine him at home when I got done teaching for the school year to keep the surgery going.

*If you are interested in reading more about his surgery, I posted about it here  and here.

The Do's Don'ts of Feeding Tubes (with some of your questions answered!)

We know people are well meaning and/or curious when these comments are made, but I'm just putting it out there that they are more hurtful than we let on:

Do's:

If you are curious how it all works, ask!  We love educating people.  And if your kids are curious, that's okay.  It is different, but what a wonderful time to educate them that not everyone eats the same way.  I cringe when little kids ask their parents about Connor and they get shushed...(to be honest, if the roles were reversed I would probably be the same way so I am totally not judging anyone!). We would also love to show you how his pump works (the more people that know the better).

Offer to help if you're around.  See above!

Be supportive

Don'ts:

• When will he eat by mouth?  Probably never.  And that's okay.  We probably should be better at giving him tastes of things, but his aspiration issue is scary.
• He wants a bite of _________ or he wants to eat ________ too! (or anything else along those lines)  I assure you, he doesn't.  Connor is happy doing his Connor thing. 

If you read all of that, I am super impressed!  I've loved reading everyone's comments this week on my posts.  I think sometimes people just see the happy Connor pictures we post, but don't necessarily think of the medical things going on with him, so I've enjoyed spreading awareness during Feeding Tube Awareness Week.

Last thing:  Connor turns 5 next Saturday.  That's crazy!