Avondale 5K

We are so excited about the Avondale 5K coming up on October 11 at 8:30 a.m.

BUT, before that, there's a Riverdogs game coming up on August 27.

Word is Connor might be making an appearance! Proceeds from the game will benefit the Webb Center so if you can make it out, please come (trust me, I know a Wednesday night game at 7:05 is not ideal)!

So, back to the Avondale 5K.  If you're interested in signing up or donating, I went through and did a step by step tutorial for you (because it can be a little confusing).

If You Can't Attend, but are Donating to the Avondale 5K:

On the main page, click the purple arrow.  IMPORTANT: If you click the donate now link, the money will go in the general fund (which is fine), but won't help Connor's Crew earn the most money.

Once you click Sponsor a Child, this page will come up.  Click on the Pledge Button for Connor's Crew.

Then you'll be taken to Connor's Crew Pledge Page.  On this page, you have several options:

1. Click the Pledge This Team button at the top right.
2. Click Make a Pledge Now towards the bottom.
3. Choose a team member of Connor's Crew to pledge.

If you do #1 or #2, this screen will pop up and you'll choose which team member you'd like to pledge

 Once you've chosen which team member you'd like to pledge, fill out all of your information and submit.  We SO appreciate you supporting the Webb Center.

If You Are Registering to Run/Walk the Race:

Click on the Green Arrow

You have a few options

1. You can login to Race Roster using your Facebook Account
2. You can manually enter your information to create a Race Roster account
3. If you already have a Race Roster account, you can login to it.  

I chose to login with Facebook, but do whatever you're most comfortable with.

Once you have a Race Roster account, you'll be taken directly to this page.  Here, you can choose what you'd like to register for (the 5K, the afterparty, or the Riverdogs game).  Then, fill in your information!

 If you've registered for the race, you'll get to choose your t-shirt size and then you'll be given the option of creating a team or joining an existing team.  Click where the green arrow is pointing to to join Connor's Crew.

From the drop down menu, choose Connor's Crew.

Click the green Save Button.

Now, if you're registering multiple people, you can add them using the button in the middle of that picture.  Once you're finished registering everyone, click the box to agree and then the blue button on the bottom.

On this page, you can choose an optional donation.  IF you want to donate more money, make sure to click the pledge option so it will go towards Connor's Crew (general donation won't and we want Connor to raise the most money!).

This page is where you will fill in your payment information.

Once you've submitted everything, make sure to share it on Facebook!  You can also set up a pledge page so people can pledge you (and ultimately Connor's Crew).

If you want to set up a pledge form, click the blue button and you'll be directed here:

You can change your picture if you'd like.  You can also set a goal of how much money you personally would like people to donate.  Please note, as long as you are part of Connor's Crew, you will automatically have a Pledge Form for people to pledge you.

**If you are old school and don't trust submitting information online to register (ahem, cough, Robert Fralix, cough, cough), you can click here and print this form to mail in as well or you can register the morning of.  Just don't forget....you're with Connor's Crew!**

We are really looking forward to seeing everyone for a great time on October 11th!  In case you missed it, here's Connor's page on the Avondale 5K Website!

Connor's First Pool Experience

Connor had his first experience with a pool today, and let's just say he wasn't a huge fan.  In his defense, the water was a little cool and Connor likes his water warm.  I think it's something that will take him getting used to, just like everything else (he used to HATE baths, and now he loves them).  Here's the video!

Afterwards, Connor got to see his Great-MaMa who is 99 (and a half) years old! 

And because he's the cutest kid ever, here are some pictures of Connor before he got his toes in the water!

Now we're thinking of buying a kiddie pool, filling it up with water and letting it nice and warm and trying again.  We shall see!

Big, Exciting News for the Waltons!

Let’s start this off with NO, I am NOT pregnant.  That would certainly be big news, but I’m not sure I would be able to say it would be exciting (Hey, Connor demands a lot of attention and is still waking up nightly, usually multiple times a night or up for several hours at a time so we don’t need two little ones doing that!).  

We have put our house on the market!  Basically, the commute is just killing us.  Connor goes to a day care for kids with developmental delays and special needs in West Ashley.  Matt and I both work in North Charleston.  So Matt (being the wonderful dad he is), drives Connor every morning all the way to West Ashley.  Then, depending on my schedule, one of us goes back to West Ashley to get him and then we all come back home to Ladson.  It’s just too much.  Especially since I’m starting a new grade level this year (not that moving won’t be stressful or time consuming, right?!).  

Plus, our house has stairs and we are so over them.  It’s okay with Connor now, but once he gets a little older and a little bigger, carrying him up and down stairs is going to be rough.  Since he may be confined to a chair when he’s older, we really need a one story house.

So, that is our big, exciting news.  If you know of someone that wants to buy a house…wink wink!

Ignorance is Bliss

I wasn't sure if I was going to write about Connor's last neurology appointment.  However, after thinking about it, I realized what we found out really doesn't mean anything.

On June 13, Connor had his neurology appointment with Dr. Kinsman at MUSC.  We really like him as he kind of walked us down a ledge when Connor was in the NICU.  We somehow got on the topic of life expectancy and quality of life.  Dr. Kinsman was mentioning it in regards to if Connor were to get really sick (like with pnemonia) because with all of his issues.  Matt kind of pressed him on what his thoughts were for life expectancy.  This is something Matt and I have talked about a few times.  I can't speak for Matt, but I know it's something I think of daily.  However, we have only talked about it with each other a few times.

 

Anyway, he said looking at Connor, he would likely fall on as a 5 on the scale of Cerebral Palsey (even though Connor does not have CP).  So of course when we got home, we looked up what he was talking about.  You can check it out here if you're interested.  Connor would actually be between a 4 and 5 (in my optimistic opinion) because he can roll both ways.  However, he has no head control and cannot sit unassisted. 

So where does that leave Connor's life expectancy?  Dr. Kinsman suggested around 10 years old.  He said there's a good chance he'll make it to 3, a 50% chance he'll make it to 10, and a small chance he'll make it to 19-20.  Just like when were told in the NICU that we might have to make that decision about life (when we weren't sure if Connor's apnea was seizure related or not), I managed to keep it together during the appointment, but I spent the rest of the appointment in a total fog.

I'm of the mindset that ignorance is bliss.  I really don't want to know.  Why? Because in my opinion, no one can ever predict these things.  Even if we could, would it change anything?  NO.  It makes us thankful for each day we get to spend with him. 

So leaving that appointment I had a good cry in the car by myself, because regardless of how everything turns out, no parent wants to hear that your child probably won't make it past 10 years old. 

Overall, Connor is continuing to do good.  He has an ear infection, but you'd never know.  The only sign was he had a ridiculous amount of ear drainage (which actually meant his ear drum had ruptured!).  His sleep lately has not been good.  Last week he was up playing anywhere from 2-3.5 hours straight (after eating).  Wednesday night he was up about 4-5 times and he's been up right now (at almost 11 a.m. since about 2 a.m.).  That equals a tired mom and dad!

This picture I took at bedtime.  I jokingly told Matt that Connor was thinking "Do I give Mom a hard time now, or wait a few hours and give her a hard time in the middle of the night?!"  HA!

Connor says Happy Fourth!