An Update - Finally!

It's hard to believe it's been almost two weeks since my last blog post!  I wish I could say it was because I had nothing to write about.  But, I have plenty of subject material.  Just not enough time.

Some "quick" updates (is that even possible for me?!):

Last Day of School - June 15

Our pool has a party for the last day of school.  It was super crowded.  But, it was a ton of fun.  My friend Lynda got there before we did, so she scored us some good chairs.

They are really happy, I don't know why they can't show it in a photo!

Have float, will get in the water.

They are really starting to look alike.

My goofy girl!  I guess since she can't dive for those rings,
she'll do something else with them.

They like to play outside the pool as much as inside the pool.

Murphy with Jessica and Samantha (twin sisters and
Lynda's girls).

How can I carry this big gun and my float?

I got this.

I took Kayla with us to the pool (she's Jordan's (my niece) roommate at Virginia Tech).  I just don't feel very comfortable taking all three to the pool by myself.  She was awesome and a huge help!  Thanks, Kayla!

Kayla and Harlie

The Pool Incident

Unfortunately, I don't believe anything has been done about the incident on the 16th.  I'm sure it's partly because I have not been "loud" enough.  Ugh.  That's just not in my nature.  And I've had very mixed reactions about this story.  Some people barely have a reaction at all - Cooper's fine after all, so what's the big deal?  Some have been just as upset as I.


I don't take any luck for granted.  I haven't done that in the last six years.  I know good luck/blessing when I see it and am on the receiving end of it and I do not let it go unappreciated.  We got lucky that day.  And I know how easily it could have gone horribly wrong.  And it happened on MY watch (and the lifeguard's).  He didn't want to be in the water.  So, when I would have looked up and didn't see him, I would have scanned the outside of the pool - the walking area all around it - to see where he went.  Did he go to the potty?  Did he go to the volleyball area to play in the sand?  How long would I have looked before I thought to look into the pool?  One minute?  Two?  He wasn't splashing (you know that drowning is very quiet, right?).    Okay, so now that this has happened, I will probably look in the pool, first.  

But still, I must say that I'm disappointed in the pool's management's handling of the situation.  I have heard that the pool has had issues in the past with the child that pushed Cooper into the water.  And as far as I know, they never reached the child's parents to inform them of his behavior that day.  I would think if you can't reach them over the phone, a letter should be sent.  In fact, I would think they would want that kind of thing in writing anyway.  I've also heard that the board met about this incident, but I never heard anything from them.

At this point, I'm afraid any kind of discipline just wouldn't make sense to him.  It's been almost two weeks already.

And I can't help but think that's absolutely ridiculous.  How can that be tolerated/allowed? Isn't that a major liability for a pool?  Don't they want that child supervised more closely when he's there?  How can they be okay with his parents NOT knowing?!  If my child did something that dangerous you can bet I'd want to know about it.  And if I found out that management knew and didn't tell me, I'd be furious!  

I just don't get it.

Swim Team

Speaking of the pool... Murphy is on the swim team again this year.  Last year was a huge struggle.  We pretty much forced him to do it.  He was not a fan of practice and he was terrified of the swim meets.  He's not a competitive child and when he heard the word "race" he panicked.  He also wasn't confident in his ability to swim 25 meters.  So, he would touch the rope - even though he didn't really need to, which disqualified him.  I think out of six meets last summer, he DQ'd the first four meets.

All we want from this experience is for him to build his confidence, make friends and have fun.  And we are so thankful that all of that is happening this year!  There's no touching the rope this year.  And no tears - and no anxiety.  He likes to go to practice and the meets.  So we are happy about that.  He has three more meets left - and now we are working on him making goals for himself.  So, we'll see how that goes.

The only negative to swim team is the daily swim practice.  It is killing my workouts/runs.  And that is a real bummer.

Harlie's Eye Appointment

So, back in this post I talked about some appointments I needed to make in preparation for Boston's pre-ops in July.  One was to talk to her eye doctor here.  I wanted to get her opinion/have her educate me on what I want as far as her eye surgery goes (which will be done at the same time as her jaw reconstruction in August).  They did a thorough exam and her eye sight is great, so that's wonderful.  It was the first time she could help in the testing, which was very cool.  They gave her a board with four letters on it and she had to point to the one that matched what she saw on the screen.

I'm glad we went.  It was worth the time.  I can now speak to the plastic surgeon in Boston with more confidence.  And that's always nice.

Harlie's New Stroller

This is so not a good picture.  But, it's all I have for now.

Harlie's PT, Traci, ordered her a new stroller and it came in on Monday, June 25th.  The typical umbrella stroller was not made for an almost six year old!  Granted, she's not the size of an almost six year old.  But still, she had long since outgrown hers.  And we hang the suction machine on it too, so it was really hurting!  This one will grow with her and will hold her weight and the suction machine for a long, long time.  It is very smooth to push and it turns on a dime. And she is so much more comfortable.  I wish we didn't need a stroller at this point in her life.  But, she still cannot walk long distances - like at the mall, for example - or to a doctor's appointment when you have to park really far away.


Later on that day, Richmond had a big storm.  After I picked up the stroller, I went and got Murphy from Summer Blast (a school program) and headed to Wal-mart (so NOT a fan - but it was one stop shopping for all I needed).  The weather was beautiful when we walked into the building.  I knew there were storms predicted, but who really counts on a weather forecast anyway?  Within 20 minutes it was raining, hailing and the power went out.  The kids were not amused.

And I have no idea why they look like they are under arrest.  The little ones were a little scared and Murphy was really worried.  I, quite frankly, was pissed because I knew I wasn't going to be able to buy my yogurt and other items that I so desperately needed.  Ugh!  I know my cart looks empty, but I have to put all my items toward the front of the cart so I can have the space to banish a child, should I need to do so (which is usually pretty often).

The employees herded all of us shoppers to the area of the store that had no skylights.  It was so dark that I had to put Harlie and Cooper in the cart so I wouldn't lose them.  Murphy kept asking me if I was worried.  I had to keep telling him no (and refraining from telling him that I was pissed and annoyed).  After the storm let up (it was over rather quickly) they let us go (without any groceries, of course).  It was beautiful outside again.

On our way home I realized how bad the storm was.  A tornado hit not far from where we live.  There were lots of trees down/broken.  And the streets were completely covered in leaves ripped from the trees.  We had no power until the next day around 10am.  I know others had it way worse.  So, then I felt kinda bad for being annoyed I couldn't buy my yogurt.  As far as problems go, that's not that bad.

ENT

On Wednesday, we had an appointment with our local ENT.  I originally scheduled this a while back (when she was still sick).  But, kept the appointment anyway so I could get her take on the whole BAHA thing and how she does surgery, etc.

Harlie being sassy and having fun while
waiting for the doctor.

Some of her information differed from the surgeon in DC.  But, that's just the way it is.  You see 10 different docs, you're going to get 10 different opinions.  Now that she's healthy again (notice she's wearing her cap again, yahoo!) I am thinking of trying to work this in after all.  I just think that it will be more traumatizing to her to have to go back in for surgery after the big jaw reconstruction.  And I would rather it be less traumatizing if at all possible.  So, we'll just see how the schedule works out.

While we were at the appointment, Harlie signed "potty."  On our way, I closed the exam room door behind me, and didn't realize that Harlie's fingers were in the way (in the door jamb near the hinges).  Of course, there's no scream from her alerting you of pain.  So, it took me a second to realize what was going on.  I just happened to see them squished in there.  Ugh.  It kills me that she can't scream to protect herself from stuff like this (this is the second time this has happened).  Later on a nurse who just happened to be in the hallway when that happened knocked on the door to ask if she was okay.  She was so understanding, it was really nice.

Rooney

And I can't leave little Rooney out.  He's so funny.  Here he is with one of Harlie's HMEs (heat and moisture exchanger for her trach).

And sidewalk chalk.

He will chew on anything (except for most of the toys that I've bought him, of course).  And the other day he ate a box of crayons.  My first clue was his very colorful poop.  He clearly ate some of each crayon in the box.  I'm pretty sure every color was represented.  I took a picture - but that was just so I could show Tom (he was not amused) so I'll spare you the agony.

I try to tell the boys to pick up the Legos.  But they don't listen.  I told Murphy just the other day, "Murphy, you lost a pair of handcuffs today.  When are you going to stop leaving your Legos on the floor?"  I know, I'm an idiot.  Of course he's NEVER going to stop leaving Legos on the floor.  Duh.

But, Rooney's worth it.  I love that dog!

Okay, that's it for now.  Whew!

OH!  One more thing... I am working on a slideshow from the We Heart Harlie event.  I hope to have that ready early next week sometime.  And, I am still working on my thank you notes.  So, until then, please know how incredibly thankful we are to all the businesses/individuals that donated items for the raffle and to all who donated their time and hard earned money for our sweet girl!  Thank you!

I must blog more often.  These long updates kill me and my sleep time!

Thanks for reading!
~Christy

PS - this post is dedicated to my friend, Allie.  Thanks for checking on me and for motivating me to write again! xo