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!

Avondale 5K

We're less than 2 weeks out from the Avondale 5K and I thought I would do a quick blog post about why this event is so important.

I think it's easy to look at pictures like this one and wonder why I am constantly posting on Facebook about donating or joining our team.

But I think it's very easy to forget just where we've been.  This was Connor when he was younger.  He was pretty much either asleep or doing this.  He was not happy.  At all.  Like ever.  Except when Daddy came home from work.

Okay Bonnie, all babies cry.  So what.  We've also had numerous hospital visits, stays, ambulance rides, etc.  In fact, we're approaching the 3 year mark of this day:

This day forever changed our lives.  It was the day we finally admitted to ourselves that he needed a feeding tube.  He was getting sick so often, and on this day, his body just couldn't take it anymore.  He was intubated in the pediatrician's office and we were rushed down to MUSC.  We had been getting pressure for a while from doctors about getting a feeding tube, but this event sealed the deal.

Why does this matter and what does it have to do with the Avondale 5K?  

Well, simply put, the Avondale 5K benefits his daycare.  

A place that has a nurse on staff.  Think about that for a second...do you know of many daycares with a nurse on staff?  Nurse Susan is simply amazing.  

A place that already knows how to handle a kid with a feeding tube.  They know how to run his feeds, how to program his pump if it dies, and they can even put a new "button" in if the one he has pops (and they've had to do this at least twice now).  It was a seamless transition back to Webb after his surgery.

This picture would be the aftermath of our first attempt at changing his button out.  It was chaos to say the least!

If Connor's "button" comes out, it is crucial that a new one be placed ASAP as the stoma can close up quite quickly.  Most daycares would NOT be equipped to replace this, and it would be difficult to get it back in by the time one of us got there from work...

I had to add this video in here...this is right after his surgery 2 years ago when we learned how to give meds the first time.  It is hilarious watching how slow we do it.  Now we just push it right on through without any hesitation.

A place where his therapists see him every week.  We don't have to stress over getting him to therapy appointments.  They go to him (and he's had a couple of them for a looong time!)

A place that brings Santa to him.  There is no way he could've gone to visit a mall Santa when he was younger.  Waaaaaay too many germs.  Luckily, Connor gets to see Santa every year now!

They even made his wheelchair into the doghouse from Charlie Brown.  How perfect?!

A place that sends him on adventures, and pushes us to let him experience things we would never think to take him to (like the movies...which for the record, he fell asleep in every single one this summer).

The Charles Webb Center is a place that has been a lifesaver for us.  There is no doubt in my mind that without them and their amazing care, I would no longer be working.  They were this amazing find that saved us (and looking back, I don't even remember how we found out about them).  That fussy boy in the video earlier?  That's how he was for them too for a looooong time.  Now?  He LOVES being there (well, as long as they're playing music constantly for him).

Please, if you live locally, consider coming out for the Avondale 5K.  It's a fun race that is super family friendly (and you can walk too!).  We also greatly appreciate any donations you can make.  Just click the link below to register and/or donate.

Help Connor's Crew Raise Money for the Charles Webb Center

Currently Connor

So, I currently have several blog posts in draft form...maybe one day some of them will get published??

It's been a looooong time since I've done a blog post, and I've mentioned before that that is actually a good thing.  It means that we're not inpatient in the hospital all the time (I'm looking at you 2013-2015...).

So I thought I'd write a quick blog post about what Connor is currently all about.

Loves

1. Toddler Tunes.  I could probably just leave this as the one and only love.  Not only does Connor love Toddler Tunes, he pretty much demands it.  Check out this video of him 'erring' until his music starts. (*Fingers crossed this works...I've never embedded an Instagram post before...you may have to click on the picture for it to work?)

Connor refuses to be happy unless his Toddler Tunes are playing on Pandora. This kid runs this house fo'sho'. #toddlertunes #playallthemusic #willworkonheadcontrolformusic #motivatedbymusic #mesmerizedbythesounds #proofthathesnothappyallthetime

A post shared by Bonnie Walton (@bnwalton) on Jun 7, 2017 at 4:53pm PDT

Not only does Connor love Toddler Tunes, he KNOWS when they try to slip a non-toddler tunes song in.  Every now and then Pandora will play a song that is typically found on their Rockabye Baby station and Connor will fuss until we go to the next song, ha!  There are also some regular songs that come on there that he doesn't like either.  His current fave is probably this one: Take a Little Nap

2.  Playing on his mat.  Connor still loves playing on his mat and is content to literally spend all day long on it.  It was the best investment we've made for him, ha!

3.  Hearing familiar voices. Since Connor's vision isn't there (sidenote: we get asked this a lot so I'll go ahead and say this:  theoretically, he should be able to see, but we're not sure what he sees.  He has a lot going on neurologically that hinders his vision {including a stroke when he was likely in utero that originated in the part of the brain that controls vision} in addition to eye issues in general {glaucoma & his left cornea did not develop properly}.  He still does not track, but I do feel like he sometimes tries to turn towards noises he hears), he is extremely auditory.  He has a definite reaction to familiar voices (some good and some not so good, ha!)

4.  Ladies.  Connor is a ladies man.  'Nuff said.

5.  Nap Time at daycare.  His teacher sent us this picture this weekend and I noticed that it seemed pretty dark.  I guessed that it was nap time and she confirmed it.  Connor doesn't enjoy the naptime for the sleep, but because he gets to have all of the teachers to himself (ahem, see #4).

6.  Being rough.  Connor is a typical boy in that he loves being rough.  He gets so excited when one of us gets on the mat, puts him on us, and we "wrestle."  He also LOVES when you put him on the mat if you swing him back and forth or play a game of slowly going down and then back up quickly.  Typical boy!  Check out this video of him and his favorite PT, Denise!

7.  Baths & Swimming.  Connor enjoyed the pool a couple of times this summer and had a blast!

Hits or Misses
So these are things that can be hit or miss...depending on his mood.

1.  Walks.  Sometimes he can be not happy when we talk him on walks around the neighborhood.  Other times, he loves it.

2.  Music other than Toddler Tunes.  Sometimes I can get away with not playing Mickey Mouse Clubhouse in the car, but other times he pretty much demands it, ha!

3.  Going out.  This is usually a hit with Connor, but other times not so much.  We honestly don't get out very much to begin with, but occasionally family will meet up somewhere and we go.  Sometimes it's great, other times, not so much.  These pictures are from back to back days. Connor loved being at the Brownlee's for the Carolina game, but going to Mellow Mushroom the next day he did not like as much.  Eh, you win some and you lose some.  We have to remind ourselves that that's how a typical 4 year old is.

If you look closely, I'm totally tickling him to get him to smile, ha!

4.  His wheelchair.  He typically does really well in this, so long as he's moving or has music.  But sometimes even those things don't help and he wants out.  Our house set up is not super conducive to his chair, so it can sometimes be hard to keep him happy in it here at home.  

Dislikes
1.  Quiet.  Connor is not a fan of quiet.  He needs noise since he's such an auditory person.  He loves chaos and lots of things going on (unless he's just not in the mood).

2.  Rockabye Baby being played too early.  He needs his Toddler Tunes in his crib for a while...then you can turn on Rockabye Baby.

3.  Getting his teeth brushed.  He definitely goes through phases with this.  He is currently in the "I hate teeth brushing" phase.

4. Eyedrops.  Connor is currently only on one eye drop (in both eyes twice a day).  But I swear he can sense or tell when we're trying to get them in.  I try to be patient and wait for him to be on his back with his eyes open, but that doesn't always work, especially in the mornings.

I think that's it, for now at least.  I'm sure I'll think of tons of other things to add later, but I am exhausted.  I hope to update this on a somewhat more regular basis in the future, but don't hold your breath :)

If Only In My Dreams...

Do you ever have those dreams that feel so real?  Some are happy, some scary, some bad.  You awake either feeling relieved it's over or sad at something that didn't even really exist?

If this ecard describes you, you might just want to skip this post.  I won't be going too much into detail, but just a forewarning.

I can't shake last night's dream out of my head.  I've had these dreams a couple of times since Connor was born and each time, I have a really hard time shaking the feeling when I get up.  

Last night/this morning in my bits of sleep on the couch (no marriage problems in case you're wondering. Sleeping on the couch at our house means you're on Connor duty and he's woken up in the middle of the night...12:58 last night/this morning for inquiring minds...), I dreamed Connor was walking.

That may seem like not a big deal, but even as I sit here typing, I'm tearing up thinking of it (lack of sleep maaaaaayyyy be a contributing factor).  

In my dream, Connor surprised me by coming around a corner walking.  And y'all, he was so darn proud of himself.  He was smiling and laughing and I'm 99.9% sure I was absolutely beaming in my sleep.  I called Matt over and grabbed my phone and just couldn't get over it.  He was magically walking.  Just like that.  It felt so real.

Then, he began playing and interacting with a ton of toys and it was like something clicked in him.  I was so amazed.  Now, full disclosure...Connor was kind of small in my dream when he walked and by the time it got to the end of my dream, he was the size of a worm.  Weird.  I'm sure a psychiatrist (psychologist?) could have a field day.  

The hardest part of these amazingly hopeful dreams is waking up and realizing it was a dream and that this isn't happening now (and for us, there's a possibility of it never happening).  That's not to say that I don't hold out hope...of course I do.  But I also know that there's a lot of things that have to happen first for him to do things like that.

I'm lucky that these dreams don't come often, maybe once a year, and they often will cover different facets of life (talking, walking, playing, etc.).  It would be very hard if they were more frequent because they kind of put me in a slight funk and serve as a reminder of the obstacles my sweet boy faces.  

However, if you have met him in person, or seen videos, you know that Connor isn't letting the cards he was dealt in life keep him from enjoying it.  I strongly feel that one day his "talking" will turn into hearing "Momma" or "Dadda" and if, and when, that day comes, I will be shouting from the rooftops.  The same if he walks.  

For now, they will stay only in my dreams...

The Difference 4 Years Makes

On Friday, Connor celebrated his 4th birthday.  I remember before we had him, probably before we were even married, when Matt brought up how funny it was that we celebrated birthdays and one more year of being alive.  I don't know why him saying that has stuck with me, but it's something I've always remembered.  

I feel safe in saying that both of us understand truly how celebratory a birthday is when you have a kid like Connor.  One who sees a multitude of specialists, has numerous health and medical issues attached to his name, and requires therapists and other adaptive equipment to help him thrive in this life.

Perhaps it was because I was always overwhelmed, but this year, I have pointed out each event since the 16th of February in 2013 that I remember.  How we were eating spaghetti and his family was over when my water broke.  I didn't even say anything...just went upstairs and started going through the information from my doctor.  #sosociallyawkward

 Oh boy...we had NO idea what was in store for us...

To the 17th when, in the early hours of the morning, I needed oxygen because Connor wasn't tolerating labor.  Before I left for work Friday I was telling Matt that it was around that time they decided to go ahead and do a c-section.  It was the first time I cried for my baby.  I was worried about him.  Would he be okay?  That was all I wanted.  I remember crying tears of joy when I heard him cry and then I just kind of went numb in the recovery room as I began to find out that everything wasn't okay, and he wasn't the healthy 7-8 lb. baby we were expecting.

I wasn't able to see him until I could lift my legs and I did that pretty quickly out of recovery.  The rest of the 17th was a blur, but being together made it seem better.

The 18th was what I thought to be the hardest day (at that point at least, ha!).  It was when Connor was transferred to MUSC.  Since I had a c-section, I hadn't been discharged yet, so I reluctantly told my "boys" bye and it was emotional to say the least.  Luckily, I had been walking around back and forth to the nursery and they ended up discharging me later that afternoon.  I was relieved to get down to MUSC and see Matt and Connor.  I remember sitting in a pumping room and someone coming in to tell us that he had a fever.  How that wasn't normal for a child so young and they were running tests.  He would need to be "isolated" and we would have to wear special gear to see him.

The 19th was a regular day, but Connor did have an MRI late at night that we hung around for.  In fact, some of those pictures from above may even be from that day.

The 20th...today.  If I thought that the 18th was hard, I was not prepared for the 20th.  Connor kept desatting throughout the day, meaning his oxygen levels were not staying up.  Matt and I went for a walk and when we got back, there were so many people surrounding Connor.  We found out he had about a 5 minute long tonic-clonic seizure and was being transferred to the NICU.  Our hearts broke.  We walked with him there, an emotional wreck as you can imagine, and then had to walk back to where our parents were in the waiting room to tell them.  They looked so confused when we got off the elevator and I'm pretty sure I just burst into tears.  It was a definite bottom point for us.  After the 20th, the days seem to blur together.  I can't tell you how long we were in the NICU, when we got moved to the Special Care Nursery, or even when we got discharged...I know it was in March and was about 3 weeks later.

 Last pictures in the Level 2 Nursery

 Pretty sure all these first day NICU pics are actually from the 21st, but whatever...we'll go with it.

I brought all of these memories up the past few days and Matt made the comment that I remember, and he tries to forget.  That's why we're good for each other.  I don't want to forget.  I want to remember how tough Connor is and what we've been through as a family.  This birthday is one I am thankful for, not just because it's another year in the books.  I am thankful for how far we have come.