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


Thursday, May 7, 2015

The Mom I Would Have Been

I read this post a while back...

The Mom I Would Have Been

And I thought, she wrote that for me!  For the past eight years, I have had these thoughts.  Every.single.day, I have wondered what kind of mom would I have been if Harlie were born healthy and fine.  What kind of wife would I have been?  What kind of daughter, sister or friend would I have been?

Because I can tell you that these past eight years and the experiences that came with them, changed me.  I couldn't help it.  No one could.  I know I've done the best I could.  I've tried really, really hard. But, you can't have the memories, the experiences, the exhaustion (mentally and physically), the knowledge and the pain, without it completely affecting every single thing that comes after it.  You carry all that stuff with you.  Even when things are great, all that stuff is still there, being heavy.

I know I would have been a more fun mom.  I definitely would have had more energy.  And my friends would have been able to complain about stuffed up noses and bumps and bruises without apologizing to me.  And I would have been more sensitive and less calloused.  Would I have been a better planner?  Would I have been better with time management?  Sometimes, I can't remember who I was before her.

Unlike the author of that post, I can't say I'm a better mom now than the mom I would have been.  I want to think that. But, I just don't think that's true for me.  I'm not better, I'm different.  Heck, on some days I would argue I'm worse! But, I agree that I am definitely the mom I never thought I could be, the mom Harlie needed me to be. And, I'm grateful.  Grateful every day to have her and the boys.   And one day, maybe I'll stop wondering about the mom I would have been.

Much love,
Christyxo

Monday, May 4, 2015

Someone tell me she isn't a hoarder.

Life.is.too.busy.

But, I want to explain more about something I mentioned in my last post.  A while ago (couple of months ago maybe?) I was trying to clean up the many toys that invaded our living space.  I noticed that I kept on having to pick up this particular toy, which was always in many pieces scattered about.  It could only be played with when it was put together.  And it wasn't something the kids could put together themselves.  After many assembles by me, I noticed that I was missing more and more pieces that made it sturdy.  Then I saw a support column that had been chewed by Rooney.  Then I noticed another column in another room, separate from most of the other pieces.  Well, I broke.  I couldn't take it anymore.  Yes, it was Harlie's birthday present.  And I feel bad about that.  But, clearly it could no longer be played with and no one was asking me to build it anymore.  So, I threw all the pieces in a plastic grocery bag, fully intending to throw it away.  But, I couldn't do it.  So, I left the bag in the toy bin.  For like several weeks.  And no one ever opened it or asked about it.

So, I finally threw it away.

Weeks, maybe months passed.  And "we" (meaning "me") were cleaning up the kids' rooms.  Harlie found a support column to the toy that was long gone.  She grabbed it with enthusiasm and held it up proudly.  Then she bolted out the door.  Ugh.  She was going to go put it in that bag.  It was probably the reason why the damn toy wouldn't stay together.  Of course the bag was long gone.

It was only a couple of minutes before she returned, sobbing, face all splotchy.  I looked at her and told her I was sorry.  And I meant it.  But, there's only so much I can take!  These kids have to learn to respect their things and put them away.  Right?  Anyway, she looked at me and said, "Mama, I want to love you."  huh?  Want to love me?  Well, maybe she's saying something else.  So, I said, "I love you, too."  Then she repeated, "No, I want to love you."  "Well, you can love me," I said.  She said it again.  I sat down in front of her and said, "Harlie are you saying you're mad at me?"  And she said, "Yeah."  Since she can't pronounce the "s" sound, she says "yeah" instead of "yes."

I've always known how important communication was.  And how infinitely more difficult life is with an impaired version of it.  But, in the past, it's always been about communicating her wants and needs.  Now, we're getting into her feelings.  And isn't it often difficult for kids to understand their own feelings - even when they can communicate just fine?  The thought of her having so many feelings, desires, protests, observations, etc. stuck in her head makes me feel so heavy.  It must be so hard to be her, to be so often misunderstood.

Somehow, we got through the moment.  Thank God I made the connection (and I can only hope I was right) and it gave her a way to tell me what she was thinking.  I told her that she was getting to be a big girl and she was going to have to be more responsible for her things.  I went on to explain that I can't keep cleaning up after everybody and that isn't fair to me.  She actually seemed to understand what I was saying.  I gave her a bath to help her calm down and she seemed fine after that.

But something about that moment changed her.  She tells me she loves me all the time now.  Like dozens of times per day.  And she hugs me, spontaneously, for no reason.  If I get upset at the boys, she starts crying and says, "But Mama, I love you."  It's so crazy.  One night I was mad at the boys for acting like animals out in public and I was expressing my displeasure (yelling at them).  When Harlie started to cry and said, "But Mama, I love you."  Murphy said, "Mom, you're going to have to yell at us away from Harlie from now on."

There was a clock in her room and we don't know what happened to it.  Can't find it.  She will not stop asking me about it.  She looks at me with suspicion now.  She thinks I threw it away.  And I might have.  I've never claimed to be sane all the time, and I do make bad decisions sometimes.  But, her room is packed with stuff.  There's a big fight going on in there between her medical stuff and her kid stuff.  So, who knows what happened in the heat of the moment?  We are going to give her room a major overhaul soon.  Because I just can't take it anymore.  The girl needs some space that she likes, that isn't overrun by crappy medical supplies and equipment.

Anyway, the other day I brought down my summer clothes and put my winter clothes in bins.  While doing that, Harlie came into my room, watched me put some clothes in a bin and started crying.  I thought maybe she thought that I was leaving or something.  So, I assured her I wasn't and did my best to explain what I was doing.  After that she looked at me and said, "Mama, you're mad at me."  Which, of course I wasn't!  At least not at that moment. Then she said, "Where flower clock?"  Oh my gosh.  I really don't know what's going on with her.  Literally, this whole crying thing lasted for an hour and a half!  I finally broke down and said, "Harlie, if I can't find your flower clock, I will go buy you a new one, okay?"  She smiled, and stopped crying.

Now, please understand that I am not necessarily proud of that parenting choice.  And it's certainly not one I would make for the boys.  But, in this case, I just couldn't take it anymore.  Sometimes you gotta do what you gotta do.

She's clearly having issues with letting things go.  Or not having control over her things.  I don't know.  I just pray that she's not a hoarder.  Seriously, these are the things that she has lost it over:

Old pajamas that she finally outgrew (size 5!)
Rooney's toys that get holes in them and have to be thrown away (that was a whole big thing, too!  I had to take her to the pet store to get a new toy for him.  And they didn't have the exact one, so I just grabbed another, but that wasn't good enough.  She left the store crying because she wanted to get him a new blue dog toy.  She picked his blue dog out of the trash and I ended up pulling all of the stuffing out so he could keep it.  Oh, the things we do to try and bring peace into our lives...)
An old kiddie pool that was behind the shed (she's still asking for a new one).
The flower clock.
Her winter pajamas that she will most likely be able to wear next winter.  I had to put those in a clear bin in her closet so she could see them.
A snake sprinkler that we had years ago?  I can't even remember.  I don't know how she did.  I don't remember what happened to it (but I'm betting I threw it away).  She wants a new one of that, too.
And last, but not least, the backyard play set, which Tom demolished.


I have to admit, this one hurt a little.  I was upstairs when Harlie walked up to me, sobbing.  She grabbed my hand and brought me over to the window and pointed at Tom taking down the play set.  It's been our plan for a while to take it down.  The kids really didn't play on it.  The only thing they ever did was swing.  So, Tom put a board up between two trees and hung the swings on that.  Even though I knew it was time, it still stung.  I guess because it was time.  I'm not one to get particularly sentimental with the kids growing up.  I think I have a very different perspective and appreciation for all the "normal" things they are doing.  The alternative to them growing up and maturing isn't a good one, so it's not something I think I should be sad about.

However, we are entering a new phase and leaving behind our baby years for good.  And there is a touch of sadness to that, I admit.  We moved into this house when Murphy was two and I was pregnant with Harlie.  I remember being so happy to have it in the backyard for him.  And he will turn 11 on Monday!  But, there are so many good experiences ahead of us.  And the new backyard is going to be better and more fun for ALL of us to enjoy.  So, I told Harlie all of the things that she's going to love about the new backyard, and she seemed to be okay.

A few days later, the kids were playing in the yard when Harlie took a flower and put it where the play set used to be...

Murphy asked her why she did that and she said, "Daddy killed it." She tried to act all serious and mournful, but then started laughing.  So, I think she's fine now. And she loves the new swing!

That smile tells me she's okay letting go of the play set.

Tom's new happy place. And Harlie's, too.  She loves to roast marshmallows
even though she doesn't get to eat them. 

She loves the new location of the swings.
Honestly, they have played in the backyard more than ever since the play set went away.  We've had friends over for s'mores and it's just a more enjoyable space.  I will admit that I was really nervous at first, but Tom has done a great job and proved that I shouldn't worry so much.

Now we are spreading new mulch (we haven't added mulch in a couple of years, which is pretty obvious).  We have a lot of mulch area in the backyard (way more than grassy areas) so it's going to take us a while to finish.  But, we'll get there.

It's now 11:47 pm on Monday night and I started this post at least a week ago.  I just saw a spider on our bed and I involuntarily screamed and woke Tom up, which he was not happy about.  We had to go on a spider hunt (I have no idea where he went, which is terrifying) and now I have to go and get off the laptop.  More later.

Thanks and much love,
Christy xo

Friday, April 3, 2015

Harlie Update

I haven't posted about life in general lately.  Well, it's been pretty great.

Harlie is really fantastic.  The best she's ever been - hands down.  Every day she surprises us with more and more words, and demonstrations of her growing imagination.

After eight long years of fighting something all the time, she is finally healthy and able to explore her world.  And oh what fun it is for all of us who get to watch her do it!!!

I feel like a new mom again.  I should have written stuff down as it happened, because I just can't remember it all.

Here are some examples:

While the boys were "helping" me open some suction catheters (aka making a huge mess) she yelled from the kitchen (never taking her eyes off her ipad), "Keeping working, boys!"  Where does she get this stuff?  Honestly, probably from Spongebob or Breadwinners.  Hey, when you just want your kid to talk, you're not so picky.



Harlie got out the construction paper and cut out a heart.  Then she drew a picture of me and her on it.  As she was doing it, she was trying to hide it and was singing on the way to my office as if to say, "nothing to see here."  She has finally realized that she loves me.  And she wants to tell me and show me several times a day.  This is brand new.  She's been telling me that she loves me for several years.  But, it's like she really knows and understands it now.  There is more to this story, and I'll share it later.



She asked me how to spell "strawberry."  And then wrote it down on the whiteboard.  I know this doesn't sound like something that I should brag about.  But, it is!  Learning how to read is proving to be extremely difficult for her.  She says, "I can't do it" and "it's too hard."  Cooper is already reading circles around her and it makes her very sad.  It breaks my heart to see her tear up when Cooper reads at night.  She just seems to know that this is not the way it's supposed to be.  Anyway, after all the struggles that come with her learning to read, it is amazing for her to ask how to spell something (I've never heard her ask that before) and then want to write it down.





One night, she went upstairs, and put on her pajamas, then we heard some clunking down the hall.  And Harlie appeared with a crown, a necklace, bracelets, rings and high heels.  She wanted to play dress up.  I have kept stuff, waiting for this day.


She's being more creative.  She used a fingernail file as a measuring stick like at an amusement park. She measured her La La Loopsy guys and drew a line on the file so they could ride the ride.  She also is taking toys from different sets and using them together to create her own set.  While the organizer in me is struggling, it's awesome to know that she is remembering what she has, where it is, and using it in other ways.  All good things.  I just have to repeat that over and over when the house is a mess.


She has been playing with one of her baby dolls a lot lately.  She really goes through phases with her toys.  Anyway, she's mastered multitasking,


She walked around for days like this...



She likes to give her nebulizer treatments.


And apparently, she had to take her to the hospital.  This is her being the mom and Cooper being the doctor.  Although, for the record, I've never hung out in the hospital in my pajamas.




When Cooper performed some medical procedure, she flinched and turned away.  Oh, she has noticed way more than I thought.  In my defense, it is very hard to see your kid get hurt (and even help others hold her down) so it can be a reflex to turn away.  Just saying.

I am going to take it as a good sign that she's come up with this game of "hospital" without having any uncontrollable ticks.  Perhaps that means that she doesn't have PTSD (at this time anyway)?  I, however, do not think I have fared so well.  I have to admit that watching her do it made me tick a few times.  I have more moments of bitterness and anger than I would like to admit.  I always struggle with those negative feelings because we have so, so much for which to be grateful.

Then I think about the last eight years and I remember all the hard, all the seemingly impossible and, honestly, I really don't know how we've all survived.  I really don't. There is always a fight in my head between, I am so grateful.  We are so lucky. and We have been so abused. There are so few people who have been where we've been and I feel so lonely. So few people realize how hard life can really be and they should try to feel more grateful, too. I'm not always proud of my thoughts, but there you have it.

Facebook doesn't help.  One day, I was scrolling through, and came across a post from a mom whose child just had another surgery.  It was a big one, and he's really been struggling in his recovery.  Like, really struggling.  The kind of struggling that most people don't even know about.  He's had to have numerous subsequent surgeries to get him balanced again and every day, her posts made me want to hug her. This particular post (I hope it's okay that I'm talking about it) was about how his head was so swollen he couldn't close his eyes and, to protect his eyes, they had to stitch his eyelids closed.  I had to stop and take a moment to think about her and to be grateful that I've never had to see Harlie's eyes stitched closed.

The very next post was from a parent of a young healthy child, who had a normal, every-child-that's-ever-lived-has-had-it-and-it's-not-life-threatening-sickness and they were struggling with that.

Seriously?  How am I supposed to deal with that?  The second parent doesn't even know that it could be worse.  How are they supposed to feel grateful that their child's eyes have never been stitched shut?  I see it all.  And it is really hard to reconcile in my head.  The only answer is to limit my time on Facebook.  Which, I have done.

Anyway, back to positive stuff... Harlie is really coming in to her own.  And we are loving every minute of it.

She asks questions!  The other day, while discussing farm animals with Brandy, Harlie asked, "What's your favorite farm animal?"  Another one was, "I love strawberries." And then she asked me, "What's your favorite fruit?" For the record, she's not terribly familiar with the actual taste of a strawberry.  I think she says she loves them because of the movie, Cloudy with a Chance of Meatballs 2.  If you haven't seen that insane movie, there is a cute little strawberry character.  Regardless, it's conversation and a cute one at that.

When Tom walks in the room she cheerily says, "Hi Daddy! Whatcha doin'?"  It makes me laugh every time I think about it.  She has such a cute little voice.

Medically, she is great, too.  She is capped all day, every day and off oxygen during the day.  We only turn it on when she's sleeping.  Because she is capped, she hardly ever needs to be suctioned.  We really need to get a sleep study done!  So, I emailed her ENT in DC and gave him an update on Harlie and asked him about scheduling a sleep study.  He immediately replied and said he would request one (it takes two weeks just to get a date!) and we would have an appointment after (instead of us having to drive up there before).  He is so considerate!

We've tried to schedule sleep studies before.  We've had at least two dates, but Harlie always got sick and, to be honest, I just didn't believe she would pass.  So, it's just never happened.  One thing that has been holding us back a bit, is insurance.  Harlie is on the medical technology waiver for Medicaid (because she has a trach) thus she has no private insurance.  IF she can pass a sleep study and then be decannulated (get the trach out) she would no longer qualify for that waiver.  And, in most cases, would lose Medicaid and nursing completely.  But, Harlie's medical issues are not limited, or due to the trach.  Whether she has the trach or not, she will always have her heart, lung, spinal and craniofacial issues and will always be on/off oxygen.  So, when thinking of losing the insurance and nursing support, there is a huge negative consequence if she is decannulated.  Now that she's home for school, if we didn't have nursing, how would I go to work?  Or the gym?  Or anywhere?  And who would be comfortable enough to watch her since she's still g-tube fed?

So, there has always been a negative side to decannulation that I didn't know if we could live with. Well, a couple of weeks ago, my Medicaid case worker came to do her normal six-month evaluation.  I asked her about it.  And she said that Harlie will qualify for two other Medicaid waivers that will be used together.  IF Harlie can be decannulated, she will help us transition from her current waiver, to the other ones and she assured me the transition will be a smooth one.  She will still qualify for nursing, just not as many hours per day as she gets now.  YAY!!!  I couldn't believe it!  What a relief!

Well, several weeks have gone by since then, and we now have a sleep study date.  It is May 17th.  Now to just hope that she is healthy at that time.  Of course she is currently sick.  She's had fevers for two days and is so junky that she cannot wear her cap.  But, the great thing is that she has been able to maintain her mid-80's sats.  So, we haven't had to give her oxygen during the day, which I think, is remarkable.

She had a quiet night last night (after two nights of being up a few times) so I hope she's turned the corner.

It's time to get the kids ready for school, so I have to run.  I've been working on this post for weeks and there's still so much I have to tell you.

Much love,
Christy xo

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