Friday, May 31, 2013

Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...


Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.


She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...




I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."


Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

Much love,
Christy xo


Thursday, May 23, 2013

CT scan and a some other stuff

Yesterday (Wednesday) was Harlie's CT scan.  And she did great!  The night before (Tuesday) I pulled up some photos of a CT scan and showed them to her.  I asked if she remembered being in one.  Of course, she didn't reply.  I went on to tell her that you have to be very still and not move while in there.  She seemed completely uninterested.

But, I think she was taking it in.  Because when we went the next day, she was not at all bothered.  She didn't fight putting on the hospital bracelet (something she used to do because she thought that meant she wasn't going home).  And when we walked in the CT room, she was a champ.  She remained perfectly still.



After it was over (just a few quick minutes) they checked over the images to make sure they were good.  Then we headed on over to pick them up on disk so I could send them to Boston.  I feel so much better now.  I couldn't fall asleep the other night because I kept on thinking of all the things I have to do and take care of - this CT scan was at the top of the list.  I am happy to be able to check this one off for good.

If only the CT scan was scheduled for an hour earlier, I could have made it to Cooper's end of year program.  Darn it.  Luckily, Tom was able to go.  And this wasn't Cooper's preschool graduation.  While a lot of kids in his class are going to kindergarten this fall, he has one more year in preschool.  With a late September birthday, we are definitely holding him back a year.  So, I'll have another opportunity next year.

Today was Cooper's last day of school.  It was a really short day, then they had a family fun thing afterwards.  They had Jonathan Austin, bounce houses, face painting, a craft table and a petting zoo.  Just look at these adorable baby bunnies...

Sweetest things ever.
They also had hairless guinea pigs.  Eww.  Poor things can't help how scary they look.  And they had a few small pigs.  CUTE!  I could have taken that little guy home he was so adorable.  Instead, I took home a little tiger...

James and Cooper - Tigers!

On Tuesday (going backwards) Harlie had feeding therapy.  She did this while she was there...


I just love how she labeled her own picture.

And then at swim practice (swim team started for Murphy on Monday) she did this...


She's so silly.

I'll get caught up on this blog eventually.  I haven't been able to exercise in over a week - or blog - and now that's got me all grumpy.  Somehow I've got to get my life a little more organized so I can be more efficient.

Also, one more thing before I go... There are a few items that were left after the We Heart Harlie event on Saturday.  Does any of this belong to you?  Or someone you know?  I hate that a child lost their glasses!




Please pass on the word that we have these items.

Okay, that's it for tonight.  As always, thanks for reading!!

xo,
Christy

Tuesday, May 21, 2013

Thank you.

Hi!  Well, so much has happened since my last post.  I really don't know where to start.  

I am in prep mode for surgery.  I can't believe that we are less than six weeks out from surgery now.  I am sure it will fly by.  Over the weekend I had some minor panic attacks over the preparations that still need to happen.  The biggest thing is that Harlie needs a CT scan so her surgeon can fabricate the devices for her surgery.  It seems silly to go to Boston for a CT scan.  So, we are going to get the scan here and mail it to her.  But, considering we are six weeks out, we have little to no room for error.  Which makes me super nervous.  

Years ago, Harlie was getting ready for heart surgery.  Sadly, I can't remember which one.  I suppose that happens when you've had five.  Anyway, she had to have a heart cath prior to.  We chose to have it done here in Richmond and have it mailed to DC.  For whatever reason (I'm not judging here - just stating the facts) DC wasn't happy with the image quality from the heart cath.  So, Harlie had to have another heart cath - in DC - and that pushed back her heart surgery date.  There's an emotional issue with changing a surgery date.  I don't know why exactly.  But, it's true (at least for me, anyway).  And of course, there's anesthesia and an annoying recovery involved with a heart cath.  So, having to repeat it was a total bummer.  I really don't want to repeat that learning experience.  

So, we need to get the CT scan done asap.  What if it gets up to Boston and the image quality isn't up to par?  I'm no radiologist.  So, how would I know?  Well, I spoke with the surgeon's office on Monday and they agreed - this CT scan needs to happen ASAP.  I found out by the end of Monday that it is scheduled for tomorrow (Wednesday) at 10:30am.  Awesome.  

Until I realized that is at the same time as Cooper's preschool end of year program.  No biggie.  Except that he has a speaking part.  One line.  But STILL!!!  I wanted to be there to watch Cooper speak!!  I am so sad.  Now I just have to hope that Tom can make it there.  

In other news...

On Saturday, May 18th, we had our second We Heart Harlie event.  It was incredible.  I have so much to say about this day, that it definitely requires its own special post (of course!!).  So, I can only say that I am truly overwhelmed by the love and support that our family has received.  From everyone.  

Lynda Reider.  Wow.  She's AMAZING!  Seriously.  I don't know how I got so lucky when she entered our lives.  I just can't say enough good things about that woman.  She has put so much energy and passion into supporting us. It's unreal.  I'm sure her husband has cursed our names at least once or twice. I don't know how I'll ever be able to thank her for what she's done for our family and for our little girl.  I really do believe that she has changed the course of Harlie's life.  I'll talk more about this later in this post.  You'll agree with me, I'm sure.  

Daisy Troop 5091 Moms and Daisies.  I don't think that these women and girls had any idea what they were getting into when they joined the same Girl Scout troop as Harlie and I.  To all of you, I'm sorry.  ;-)  But you girls have jumped in and loved and supported us.  You are appreciated more than you'll ever know.  

Our Family and Friends (who know us, including those who I've never met, but I consider dear friends - you know who you are!).  I know we come with baggage.  You don't have to support us through ONE hard time.  You have to support us through YEARS of hard times.  Through MANY surgeries.  And I know that's difficult.  Honestly, I don't know how you all do it.  I'm exhausted living my life.  I can't imagine how exhausting it is to have to support me living this life.  I get it.  And I'm sorry.  I wish there wasn't a need. I wish I could be more supportive of each and every one of you.  I wish I could be more of a giver than a receiver.  But I hope you know that when I have a bad day, I think of all of you and you give me strength.  Thank you.  

Supporters I've never met.  And those supporters who came out and walked in the rain on Saturday.  This may sound egotistical, but I don't mean it that way... I hear that I'm amazing fairly often.  For the record, I don't believe it.  I am just an ordinary person (albeit, a naturally positive person) trying to have a happy, good life, and provide a happy, good life for my kids.  I don't have a higher-than-average intelligence.  Or a talent.  I have the same goals as many.  But you - I think YOU are amazing!!!  You are supporting us - my family, our daughter - without knowing us!  You are generous with your money and your time and your energy.  That is amazing!!!  I wish I could thank each and every one of you individually.  Many of you came out in the RAIN to run, or walk.  Many of you made the We Heart Harlie event your priority for the morning.  I am just blown away by you.  I wish I could shake your hand, give you a big hug and tell you what you're doing for my family.  

What are all of you doing for me and my family?  For Harlie?

For me and my family:
I'll be honest.  Some days are REALLY hard.  I don't like to talk about those days.  I'd much rather be positive. But some days it's hard to be positive.  And most of the time, I don't write when I feel like that.  And when I struggle like that I think of all of you.  Lynda, Daisy moms, Daisy girls, family, friends, strangers... and you all get me through.  You don't know it.  But you do.  Somehow, I am not on meds and I'm not an alcoholic.  I think I have you to thank for that.

For Harlie:
She is six years old and she doesn't seem to have an ounce of a self esteem issue.  Isn't that amazing?!  When she was born, I pictured a completely different future for her.  And it wasn't the kind of future you'd ever want for your child.  I never, in a million years, dreamed of her being surrounded by a group of girls singing "That's what makes you beautiful."  Or of kids selling lemonade to collect money for her.  Or of kids giving her their piggy banks.  

She's confident.  She's headstrong.  And she knows she's loved.  How can a mother thank you for that?  HOW?!?!?!?

I'll post again about the event, with pictures.  It really was amazing.  When I think about it, I shake my head.  I keep thinking, "How?  How did we get so lucky?"  So many wonderful people there.  So much love.  Thank you.  Thank you.  Thank you.  

Much love,
Christy xo


Wednesday, May 8, 2013

Camping

This past weekend, we went camping.  We went to the same campsite that we went to in October when Cooper cut his face.  I am happy to report that we had no incidents this time around.  Yay!  But one might say we just got lucky...

Probably not a good idea.

Definitely not a good idea.
The guys made a slack line (or whatever you call it)...

Harlie loved it.
And so did Cooper.
Look at Mike go!
I think Bill might fall...
Tom balancing away.
Griffin, Cooper and Kaden having lunch.
Mallory, Murphy and Kaden exploring.
Rooney was great.  He stayed within eye sight the whole time.  And when we called him, he came.  He did a ton of running.  And he missed his normal 12 naps a day.  Which helped him to sleelp well at night in the bottom of our sleeping bag.  

Look at my sweet Rooney.
Carnitas for dinner.  Yum!  Thanks Mike!
Tom made a huge bowl of guacamole to go with the yummy Carnitas.  And we had some good margaritas, too.  All in honor of Cinco de Mayo.  We don't rough it too much when we go camping.  We eat very well.  

Saturday night Carnitas dinner.
We did a lot of sitting around the fire.  There is a huge stone fire pit and it's where we tried to spend most of our time.  And of course, we roasted marshmallows (my favorite) and made s'mores.  The kids had flashlights and glow sticks, and they had a blast.

After packing up to go home, we got some group photos by the fire pit.  

Harlie, Cooper, Kaden, Murphy, Mallory and Griffin.
Murphy took the picture of the grown ups.  We saw Harlie coming our way, and yelled "Push the button!" at him over and over.  Why are kids so slow when you want them to be fast, and fast when you want them to be slow???  Ugh!  So, Harlie jumped in (keep in mind that she moves pretty darn slowly) and blocked Dan the dog (Heather and Neal's dog).  Oh, Murphy...

Mike, Tom, Neal, Marcy, Me and Heather
I knew that Rooney would be exhausted when we got home.  During the weekend he ran so much, and slept so little.  He's tried to make up for it this week, that's for sure!

Rooney was one tired pup!
We really had a great time.  And we'll go back again in the fall.  Each time we'll make it a little better to try to glam it up a bit.  I've already been on Pinterest looking for some glam s'mores to make.  Oh yeah, they have some fancy ones...

And I just can't end this post without telling you how thankful we are.  I thought so many times about how lucky we were that Harlie has been well for several weeks, which allowed us to go without too much worry.  We always worry a little (of course!) when we leave the comfort of our home and familiar medical support.  But, Harlie was able to have fun without any problems or scares.  And we are so thankful for that!  

Oh, I'll have some more info on the We Heart Harlie event soon.  We have so many great prizes and we got the new t-shirts in today!  They are great!  I'll post photos soon.  I can't believe the event is just over a week away!

Thanks!
~Christy xo

Friday, May 3, 2013

Yuck

I just have to get this off my chest.  Yesterday I emailed her surgeon in Boston to let her know that we were unable to get the sleep study done this winter.  Harlie was way too sick from Christmas to April to make it happen.  And now, it's been five months since she's worn her cap during the day.  We have started to try to get her to wear it again, but it is a struggle.  I'm hoping she just needs to get used to it again, and that she's just forgotten how great it is to have a voice.  We've bribed her a few times with the iPad and computer and she's worn it for about 10 minutes, twice.  Not much to brag about, that's for sure.

Anyway, her surgeon is fine with proceeding with the jaw distraction without it.  As am I.  But, in the surgeon's response to my email, she said that she needs to see Harlie in the next month.  She needs a CT scan so she can do the treatment planning and device fabrication.  She also said that it's important that I am aware that the jaw distraction might not be enough to get her decannulated (removal of the trach).

I knew that.  I know that.  I know there are no guarantees.  Ever.  But something about reading it, seeing it, whatever, has made me sad.  It's gotten me down.  It's not new information.  So I don't really understand why it's gotten me like this.  I guess I just live moment to moment, day to day.  I don't really look too far into the future.  And I have to hope that it works.  Because to think about it not working is devastating.  And I can't live my life feeling devastated.

Thinking about it also brings up questions in my mind.  Questions I've had for a long time.  Will we ever get her decannulated?  Will I ever hear her true voice?  How many surgeries should we do before we give up?  I believe that these surgeries are necessary, even without decannulation as a goal.  She still needs better oral structure for better speaking and eating, even if she has to live with the trach.... for however long she has to live with it.

So, thankfully, these surgeries aren't for nothing.  But still... I want to know what life is like without the trach.  I want her to know what life is like without the trach.

I'll bounce back.  I do have hope.  And I have to hold on to that.  And get us through the next several months of a tough time.  We can do this.

Thanks!
Christy xo

Thursday, May 2, 2013

We Heart Harlie

The We Heart Harlie event is right around the corner.  The big day is May 18th.  Lynda Reider has been working so hard!  Just look at this flyer!



Wow, right?  Thank you to Courtney Lynch (and her company and employees) for this beautiful flyer!  I think she did a great job!  And thank you to Paige Stevens Photography for the beautiful pictures of Harlie!  I will post the rest soon.  They are just beautiful!!

This year the raffle and 5k have been combined into one day.  And Lynda has been working her magic getting lots of fun stuff organized.  She even got a firetruck lined up to be there.  There are going to be lots of good raffle prizes - I'll post a list soon.

We got new t-shirts designed and ordered, and they should be in any day now.  I'm so excited!  You can order them when you register for the 5k, or you can buy them the day of the event.

Here is the link to register.  http://www.racerpal.com/races/WeHeartHarlie.html

Harlie's school is so incredibly supportive of her.  It really is amazing.  The PTA passed out papers for the students to cut out hearts and decorate them.  Then they post them on the wall in the school - Hearts for Harlie.


They are going to do this through the month of May.  Isn't that the sweetest thing?  I want to share a Facebook comment from a friend of mine, Beckie:

What a thoughtful project.  So good for Harlie, but such a learning experience for the other children.  Kudos to teachers who see beyond the "book learning" and take advantage of such a powerful example that can't be taught any other way!"

I am truly thankful for how amazing Harlie's school (both administrative staff and students) has been to her and to our family. I never dreamed it would be like this.  And Harlie knows that wall is in support of her.


Today, she studied it.  And she picked one of the hearts off the wall.  It was a drawing of a little girl standing next to another little girl.  And the smaller girl is clearly a drawing of Harlie.  It has her bow and her trach.  It was drawn by a fellow Daisy.  I don't think Harlie realizes that.  But, she knows the picture is of her and another little girl.  And Terri told me that she held on to it all day.  And as soon as she walked into the house this afternoon, she showed it to me.  The whole thing is overwhelming.  I really had NO idea how loved she would be by other kids.  I feared the world was a lot more cruel.  I have never been more glad to be wrong.

Lynda runs the We Heart Harlie Facebook page.  And she's been working on the route for the 5k.  Since we will be running on a main road, she's had to get the help of some Henrico County police officers to help with traffic control.  I really don't know how she finds the time to do all that she does.  (And she leads a Daisy troop, too!)

She also wrote this story and submitted it to Richmond Family Magazine.  Isn't she something?  Truly!  I don't know how in the world I'm ever going to be able to thank her enough.  I think her husband is really looking forward to May 19th - when she doesn't have to spend so much time and energy on the Holton family!  Lynda and Rich - thank you!!

Much love,
Christy xo