Wednesday, July 1, 2015

Family Vacation at Lake Gaston

So much to update!

First, I can't believe that it's now been over SIX weeks since Harlie's sleep study and still no word!!  They said it would take between four to six weeks to get the report done.  Harlie's ENT asked for the report to be expedited.  Six weeks later, we are still waiting.

This report is potentially life changing.  We hope it's going to be life changing.  And we are still waiting.  Waited more than two months to get the appointment.  Waited over eight years to get to the point that we had the opportunity to wait for this report.  Crazy.  I just want to know!!!

Other than that, things are good.

We went on vacation a couple of weeks ago to Lake Gaston in North Carolina.  It was our first time there.  We normally go to Lake Anna. But our family has grown to 20 people, so we couldn't find a house large enough to accommodate us there.  Luckily we found a house at Lake Gaston, which is a larger lake, and is only an extra hour away.

This year, our family graduated to having to take two cars.  That was after packing "light."  But, with it only being two hours away, it wasn't a big deal to drive both cars.

Harlie did great.  And we couldn't help but enjoy how vastly different an experience it was versus last year's vacation.  Last year, she was on oxygen the entire time and had NO energy whatsoever.  She spent about two hours at the dock the entire week.  And to get her to the dock, she rode in a wagon since the walk was way too much for her.

But, this year, she could walk all by herself.  AND, she mastered getting in her float and in and out of the water ALL BY HERSELF!  No oxygen tubing, and she had plenty of energy to enjoy herself.  And, as if that wasn't enough - everyone got to hear her talk and could understand so much of what she was saying.  WOW!

A different vacation, indeed!  I can't believe how great she is doing.  Life is SO much better now and it's hard to believe we lived as long as we did in a whole different place.  We are so grateful!

Here are a few pics from the week:

Our family.
The dock.  And yes, I let my boys jump from the top.
All three of them.


One day, we were hanging out on the top deck and I got up to go check on Harlie (who was in the house).  When I came down the stairs, I looked in the water, and there was Harlie, floating in her tube, all by herself!!! She said, "Hi Mama!"  Oh my gosh!  I can't tell you how many heart attacks that girl has given me these last eight years!  Thank God she could get in and out of the water safely!

Our view to the left of the dock.

Our view to the right of the dock.

My view on the boat ride.
Happy guys on a boat.

REALLY happy guy driving the boat.


Tom letting Murphy drive.

And Harlie.

And Cooper.  This is the life. 


Me and my sister, Sandy.

Two happy kids.

Three happy kids. 

Harlie loves the pontoon boat.

Murphy and Charlie in a Harry Potter trivia contest.
Murphy won.

I sure do love this guy.

Me and Maggie.

Me, Kelly, Jordan and Maggie.

Harlie loves her cousin, Chase.
If he was awake, she was right with him.

Feeding the fish at the marina.



How Harlie floats.
This is when it pays to be tiny.  She still fits in an infant float!

Harlie's happy place.  This girl loves to fish.
Here are some videos:

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Tom instigated a cooler water fight between Cutter and Charlie.  It was entertaining for all of us. Cutter is my sister's youngest and Charlie is my older brother's youngest.  They are hysterical anyway. 

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I should have gotten some pics of my nephews.  But, I really didn't have my phone around much.  We had spotty cell service, at best.  So, I really unplugged for the week. It was so great, that I'm having a very hard time plugging back in!

Okay, well that's it for now.  I've been working on this post for weeks!  But, now with summer swim team in full force, I have even less time to sit in front of the computer.

Much love,
Christy xo

Monday, May 18, 2015

More on the sleep study

I'm thrilled to report that she slept all night with the cap on!

The night was a long and torturous one, though.  For me, I mean.  Every time one of the techs would come into the room, I was so afraid they were going to tell me we had to remove the cap.  I held my breath each time, and then they would say, "Just replacing an EKG lead" or something like that.

There were parts of the night I found unbearable.  For one, I couldn't see a pulse ox.  So, I had NO idea what her sats and heart rate were.  That was super weird.  In fact, it was so weird that my crazy imagination took over and I started to wonder if something happened to the techs.  What if they left and weren't watching her numbers?  What if only one was there and she passed out, had a heart attack or was killed by a jilted ex-lover?

Harlie would sound good for a few minutes, and I would relax.  Then she would sound bad.  Then good again.  Then bad.

Every time she would make a noise, I would will her to stop.  At around 3:30 am, I woke up to hear her coughing.  Then she made a lot of noise.  I wondered if I should get up and suction her.  But, I made myself stay put.  It was so incredibly hard.  Somehow she would settle down and the noise would soften.  Then I would breathe again and think, okay, it's going to be okay.

Then she would make a squeaking noise that I had never heard before.  And I would hold my breath all over again.  And I would look toward the door to see if footsteps were coming.  There were several times that I thought for sure they would come in.

It was awful.  And each minute crawled by.  Slower than the last.

I think I slept maybe two hours.  And I couldn't go back to sleep after 3:30 am.  Finally, just before 6am, the tech came in and told me it was OVER!!!

SHE MADE IT!!!  I made it!

That was the first night she ever slept while breathing through her mouth and nose.

The tech said she did "great" and that she slept "well."  So, I take both of those as good signs.  What's scary is that she said it printed out 1,000 pages!  That sounds like a lot of episodes to me.  But, what do I know?  Apparently each episode has to be scored, so it takes a while.  The WORST is that she said they are running at a 4-6 week time frame to get the data read and sent to the doctor.

I asked her if I should be hopeful, and she said she couldn't answer that.

Well, I am anyway.  I think things look good for a future decann.  But, we have to wait and see.  Her ENT said he would get in touch with me after he gets the report.

I personally think a few month's wait for the study, surviving the study itself, and then having to wait another 4-6 weeks for more information should qualify and cruel and unusual punishment.  As if the past eight years didn't seal the deal.

Oh, before I wrap this up... we told Harlie that we were going to the hospital to sleep there and why.  On the way up, she coughed and then screamed, "I need a doctor!"

Then, as soon as we got to the fourth floor and walked into the sleep lab, she started fake yawning and said, "I'm tired."  I guess she was trying to get in the mood.  She was so funny.  And so very good.  I know I talk about how hard things are - but she really does make things better.  She's so easy going and she has the best disposition for her life.

I'm so thankful for her and for where we are right now.  Thank you so much for all your positive thoughts and prayers!  I can't wait to be able to share more fabulous news.  In 4-6 weeks.  I'm so, so hopeful.

Much love,
Christy xo


Sunday, May 17, 2015

Sleep Study Happening Now

Whew! It's been a busy weekend!  I will have to save the blog post about Harlie's triathlon for later tonight or tomorrow.  It went great, by the way!

Since the sleep study is happening now, I thought I would start with that.  First of all, I CAN'T BELIEVE WE ARE HERE AND IT IS HAPPENING RIGHT NOW!  After eight and a half years, we are finally here, seeing if she can breathe without the trach.  Gulp.

Our check-in time was 7pm. Now, I'm used to having to wait well past appointment times to see doctors.  I don't even want to know how much time I've actually spent waiting in a waiting room.  I'm sure it would be depressing.  However, I had NO idea we would have to wait for 1 hour and 20 minutes tonight!  Goodness gracious - knowing that would have certainly changed my schedule for the day.  In the least it would have made driving in heavy traffic to DC a little less stressful.

But, I have to shake it off and move on.

We got to our room at 8:20pm.  And she was done putting all the leads and stuff on her by 10pm.  I was pleasantly surprised at how well she did!  She fussed a little bit, said she was scared a couple of times, but for the most part was cooperative.


Just a few wires...


To put all over you, including your head...






Adding the nasal cannula was the hardest part.  She does not want it in her nose.  If it were Cooper or Murphy, it would have been up there without being asked.


Nighty-night, Harlie!

I think she's asleep now.  And she isn't making any noise.  I just hear air.  The tech said that if the numbers aren't safe for her that she will wake me up so I can remove her cap.  Clearly, that will mean she failed.  If she doesn't wake me up, then I guess that might mean she passed.  But, it takes a couple of weeks to get the final report.

I can't see her numbers, which is weird.  I'm so used to being able to see what her sats and heart rate are.

I am really nervous and am wondering how I'm going to go to sleep.  I may have gotten my hopes up too high.  I will be pretty so devastated if she doesn't pass.  I think that will mean that she will have to have another jaw distraction surgery before we can try again.

10:20pm, the tech just came in (I held my breath, oh this is hard!) to adjust an EKG lead.  I asked her what her sats are and she said upper 80s, so that's great.  She's not on oxygen right now.  They might need to give me oxygen if they keep coming in here to make adjustments!

10:25pm, I hear more air.  Not sure what that means.  This is really hard.

Please send us some good non-trach needing breathing vibes.

Much love,
Christy xo

Saturday, May 16, 2015

Power Kids Triathlon

Today Murphy did his first sprint triathlon!  A few days ago, we asked Murphy if he would like to do it.  He said, "No, thanks!"  But, then I looked at the website and said, "Oh, I didn't know it was for the Children's Hospital at VCU."  And then he said, "Oh, then I'll do it."  Love him!

Here he is waiting to go into the pool.

Abigail, Brittany and Murphy.

Brittany ran our We Heart Harlie & Friends 5k last weekend.  Brittany is such a giving person.  She has delivered flowers  and chocolate to my door before.  So thankful for kind hearts like hers.

100 meter swim done.  Heading to get his bike.



In transition.  My friend Sally (in the blue shirt) is helping Murphy.


Headed for the 4 mile bike ride...


The bike was three loops.  This is me telling Murphy he has one more to go.


Unfortunately, he didn't listen to me. When he passed me and got to the u-turn area, he said they told him to go straight instead of to u-turn. Frustrating. And by that I mean that Murphy didn't listen to me.  Sometimes that kid drives me crazy.  But, now he'll know for next time (and he already said he wants to do another one!).

Off to finish with the one mile run...





All done! His time was 34 minutes.  But, you need to add eight minutes for the loop on the bike that he didn't do.  Regardless, he had fun doing it, and we are thrilled about that.



And he was thrilled to celebrate with Kona Ice with his friend Garrett.


Great job, boys!

Tomorrow is the adult tri, and we are relaying it with Harlie in tow.  Our friend Kyle Yocum is swimming 300 meters and he's going to pull her in a little boat.  Then Tom is going to do the bike leg (45 miles) with her in a bike trailer.  And then I am going to do the run portion (5k) while pushing her.  Beth from United Athletics was kind enough to loan us all the equipment we need to do this.  I am excited to see how the stroller feels since I hate mine (it is so hard to steer).

Harlie is so excited.  As soon as she saw the boat and the life vest, she had to try it out.


I can't wait to see how she does tomorrow.  I think she is going to love riding in the boat in the pool!  Our start time is 6:40am, so I need to get to bed.

But, one last thing, tomorrow afternoon Harlie and I will drive up to Children's National Medical Center in DC for her SLEEP STUDY!  We are SO close!  And every time I think about it, it feels hard to breathe.  Please send good, positive vibes that the sleep study goes well and that she can sleep through the night while wearing that cap.

I will try to post again from there tomorrow night.

Much love,
Christy xo

Friday, May 15, 2015

We Heart Harlie & Friends 5k and Raffle Event

This past Saturday was the We Heart Harlie & Friends 5k and Raffle event.  I honestly don't know how I will write about it to do it justice.  It is an overwhelming event, for sure.  This year it was held at Glen Allen High School and the setting was perfect.  I am hoping that we have finally found our home for this event so we can keep it there every year.  Having that consistency will definitely help us make the event better and better each year.

It looked like we had more people at the event this year.  I don't know the final numbers, but we definitely had WAY more registered participants (over 200) than ever before.  And as I looked around at all the people that chose to spend their precious time with us that day, I was truly overwhelmed.  How in the world did this happen?  How did we become so incredibly lucky to have such a massive, compassionate, caring, energetic and fantastic support system?

I wish I had an aerial shot of the event so you could see how many people were there.  It was amazing!  I went fishing through photos people shared on Facebook and found this one, shared by Dee Shackford.  This is only one part of the area!


Here are a few more photos from the day:

Harlie on the slide.
Here is the start of the 5k.  Just look at all those Inclusive Racing athletes and runners!  I can tell you that pushing a child/adult while running is HARD work!  I have so much admiration and respect for them.  None of them have to do that, but they want to.  Wonderful people to want to give running and racing to those who can't experience it for themselves.

The start of the 5k.  



Bryan Mangas and Harlie coming into the finish.

Cooper during the 1/2 mile kids fun run.

It is always fun to watch the kids race.

Bill Ridgway, his son Noah, and me.

Amy is the one in the black shirt and she is Harlie's
wonderful speech therapist.  So thankful for her!!

Niki, Katherine, Anna and Kat - my marathon running friends.
We've logged a lot of miles together over the years.
So happy to have them in my life! 

The Allen family.  Also our lead sponsor -
Capstone Financial.  Thank you, Rob!
Our sponsor banner.  How awesome is that?!
Harlie and her friends have wonderful supporters!! 

We had an MC this year and he was fantastic!
Thank you Fred Bouzek!
We had a section of Kids Helping Kids this year (new).  We had painted rocks (super cute), bracelets, necklaces, cupcakes, a basketball hoop, etc.  Kids came up with ways to make money and then donated all or some to We Heart Harlie and Friends.  I was so impressed.  I wish I had pictures of all of them, but it is a crazy day and I didn't take ANY pictures!  Thankfully, Paige Stevens Photography was there for a bit and took some great shots for us.  Thanks, Paige!

Camdyn and her cupcakes.

Madison and her painted washer necklaces.
Then there's these three...

Cooper, Murphy and their friend Garrett.
Some other things I'd like to mention:

Girls on the Run participated in our race and it was awesome to have them with us this year.  They had a lot of young girls who ran the 5k and it was awesome to see them finish.  I hope they can join us next year, too.

We had two food trucks.  Thank you to Port o' Call and King of Pops.  I originally had three lined up, but one didn't show.  It turned out to be better that way.  I was in charge of booking the food trucks, and let me tell you that it was a learning experience.  Next year will be better, for sure.  I was late getting to them, so it wasn't easy to find some that were available.  And I should have had them arrive a lot earlier.  Live and learn, right?  But, for the record, I had the best popsicle, ever (orange cream) from King of Pops.  And Port o' Call made the best pork tacos I've ever had.  So, so good!

We had a little hiccup with the 5k course.  I don't have all the information yet, but from what I've gathered, there was a wrong turn made near the end of the course that made it short.  Again, lessons learned.  As soon as people started arriving in the morning, I felt like we were in over our heads.  We had the best attendance (I believe) yet and quite frankly, I think we are at a place where we need some help to run this.  It's just gotten too big for the few people that are putting it together.  This is a GREAT thing, of course!  So, we are already brainstorming and reaching out to those who put together real, certified races.  I'm happy to report that we have some great people who have already committed to helping us run the 5k next year!  Woohoo!

We have also decided to move the date for next year.  The feedback we received is that Mother's Day weekend was difficult scheduling-wise.  It was Mother's Day, of course.  And it was the Susan G. Komen walk for the cure on the same day.  So, we decided to try the first weekend of May next year.  More info on that in the future, of course.

Also, thank you to the DJ, our face painters, Mad Science (provided cotton candy), all our businesses and individuals who donated items for the raffle (we had some great raffles again this year).

I wish I could put all the photos in this blog post.  But, since I can't, I will post a link to the website when they are up.  Until then you can check out the We Heart Harlie and Friends site for photos of last year's event.

Lynda (WHH&F's Executive Director) posted a few posts since the event.  You should read this one. I have no words to add.  Bryce and Lindsey are wonderful people, who have their own tragic story. I met Lindsey at the event and I told her that I hate that she has a story, too.  I liked her instantly.  She's strong, I can tell.  I suppose that's what having your own story makes you.  Just standing there talking with her and thinking about their sweet baby made me cry.  And I wanted so desperately to say something that would ease their pain.  But, I don't think words like that exist.  Bryce ran with Inclusive Racing for the first time at the event.  What a great guy - just great people all around!  And I'm so sorry, but I don't know the other gentlemen in the photo.  How awesome is it that there were so many people I didn't know at the event!  That proves how much it's growing!

Bryce is on the right and Stefan is in the middle.
Thank you for your amazing support and love, Bryce and Lindsey Neumann!

And thank you to everyone who came out and had a great time with us this year!  It really was a wonderfully crazy few hours!  And thank you to everyone who volunteered, sponsored and donated to help make the day happen.  Especially Lynda Reider - she puts her heart and soul into this foundation.  How she does so much, I'll never know.

I can't tell you how difficult it is to properly thank everyone.  The words, "thank you" just don't feel adequate.  I'll speak for all the friends - Alex, Harlie, Abby, Morgan and Peyton - you made a difference in these girls' lives.  I'm talking gifts of specialized care, much needed therapies and various modifications they need to live good, full lives.  All of their moms and dads are so grateful.

Much love to you all!
~Christy xo