Halloween is Hard

So I'm going to preface this with saying that this not a post about looking for pity from anyone.  It's just expressing how Matt and I feel.

We're quickly approaching Halloween and while most families are excited, it's business as usual in the Walton household.

You see, Halloween is not my favorite holiday. My dislike partially stems from my time in retail working at Party City (Halloween was our Christmas).  Combine that with my hatred of being scared and it's not something I enjoy.  However, when you become a parent, you look forward to dressing your child up in cute costumes and taking them door to door for trick or treating.

We haven't had that kind of luck.  First, let's take a look at how our Halloween's with Connor have gone so far:

2013:  Connor was home sick from daycare with me and I was actually sick myself with food poisoning.  I took him to the doctor and ended up having to hand him over to the pediatrician so I could go puke in the bathroom.  I also had to pull over (for the same reason) after picking up meds for him on the side of the road because I couldn't make it 5 more minutes to get home.  We actually did have a costume for him that year, but we had to take our pictures a few weeks later.  This was our photo session:

Not quite the picture I was envisioning...

So mad right now!

2014:  This was actually a pretty uneventful year.  No real costume for him, but he dressed cute!  He had a Superman shirt from the Mahaffeys that he wore to daycare!

 Super Connor!

 Ready for Daycare y'all!

 Bring on the trick or treaters!

Eh, on second thought, I think I'll sleep instead...

2015:  I'm not gonna lie.  Last year I got pretty upset.  I had big plans of us sitting outside together until Connor got tired, handing out candy to kids.  We got one good picture before chaos ensued.  Connor's button ended up popping out and we had to change his button, which caused him to freak out.  Then he passed out and we ended up taking him to the ER early the next day. I had such high hopes and it was pretty disappointing...

The calm before the storm...

So now we're at 2016 and Connor will dress up this year, but not in a costume.  I feel like he would be very uncomfortable in a traditional costume.  He's dressing up since his class is going trick or treating down at the Disabilities Board on Monday.  Otherwise, we honestly wouldn't.  This doesn't include the turntable for his wheelchair tray or his cool sneaks, but you get the idea...

Since we're at the present day, let's discuss another reason that Halloween is hard for us.  We currently live in our own little bubble.  We see healthy kids in the neighborhood and at events we attend, but we try to focus on what we have.  On Halloween however, we have the "What could have been..." on our doorstep all night.  It's just hard to see.

Since Connor is 100% tube fed, we're not taking him out for candy that is clearly not for him.  If we thought he would honestly enjoy going around door to door, then we would.  But Connor is a kid on the move and he would likely not enjoy stopping at random houses.  

So, we will stay at home on Halloween night and pass out candy while Connor passes out in his crib.  And while, yes, I do wish it could be different..not for us, but for him, I will squeeze my sweet boy and be thankful for each day we get to spend with him. 

One Year

One year ago today was a BIG day for our family.

On June 16, 2015, Connor had some major surgery.  Connor got his feeding tube, a Niessen fundoplication, ear tubes, 4 teeth pulled, and a bronchoscopy to check his adenoids.  While sedated, he also got an echo on his heart.  Whew!

I remember how stressed Matt and I were leading up to the surgery, although we didn't talk about it much...what's there to say?  We were both feeling the same things.

So where are we a year later?

These surgeries were a lifesaver.  I only regret we didn't agree to it sooner...it took our PICU stay for respiratory distress to finally convince us to proceed with the surgery (and someone kept getting sick and delaying it, ha!).

This past winter and spring were a complete 180 from last year.  Yes, he got sick (he's pretty congested now actually), but nothing that landed us in the hospital, ER, or After Hours.  Since he's had his ear tubes, we've had no ear infections and he's put on at least 10 pounds since his feeding tube.  He gained a lot of weight really fast and it was almost too much too fast.  He's currently getting 130 mL of Compleat Pediatric plus 30 mL of water every 3 hours 6 times a day.

Here are just a few of my favorite pictures from then to now!

On a final note, I shared this memory on Facebook the other day and every time I look at it I can't help but laugh.  Sweet Connor was not a happy baby (here at 3 months):

Just for comparison:  here's Connor in the same chair with the same bear:

Talk about a big boy!  Very thankful for the hard working teams at MUSC that made his surgery possible a year ago!

New Kicks

So this is going to mainly be pictures because it's about my bedtime and I am tired!

Today we went and got Connor's AFO's fitted (he was casted for them a couple of weeks ago).  Connor did really well and we're excited for him to wear them!  He will wear them when he is in his stander at daycare and when his wheelchair comes in (3-4 weeks hopefully).  We can also put them on him at other times (like when he swings here at home...we just got it in and can't wait to put it up for him!).

Trying them on to see where the pads need to go

Super short video, but that smile at the end just melts my heart!

The best shoes we have for him to wear with the AFO's right now...thanks to whoever gave them to us!