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

Upcoming Events (more about these soon):

We Heart Harlie 5k

PowerSprint Tri

Wednesday, March 4, 2015

Disney World, Day 3.

Monday, December 8, 2014

Magic Kingdom

It was misty and cold that day.  But, we didn't care.


It was so cute to watch this sweet girl's reaction to arriving at Disney.  She was beside herself!  It made whatever we had to do so worth it!

On the monorail.


The line to get on the monorail was pretty long and took some time.  Then, as soon as we got in the park, we went straight to guest services to get Harlie her DAS (disability pass).  The cast member asked me how many were in our party and we said 13.  She exclaimed "That's too many!" I thought she was a bit rude, but really didn't want to start the day off badly, so we didn't fight it.  She put us down as a party of six.

Months and months ago, I called and made appointments for the girls to have princess experiences with Bippidi Boppidi Boutique and the boys to have pirate experiences with The Pirates League.  I thought I was ahead of the game, but as it turns out, I was already too late.  They were pretty booked and I could not get the girls into the boutique at Magic Kingdom.  So, they had to go to Downtown Disney for theirs.  But, the only Pirates League is in Magic Kingdom, and I took the only appointments I could get.  Unfortunately, the boys were at 11am on Monday.  Thank goodness Laura had to call them for something.  She found out I had the appointments written down incorrectly.  So, if it weren't for that catch, the boys would have missed it!

Murphy said he didn't want to do it.  He said he was too old.  I am trying hard to respect him figuring himself out as he gets older.  So, I wasn't going to fight him.  But, when we got there and I said that I had an appointment for him, but he thought he was too old, the cast member called him over.  She showed him the info sheet and told him that dads do it, too, and you are never too old for anything at Disney.  Luckily, she talked him into it.

Our party then split up.  Tom, Mike and Laura took all the girls to ride on rides and Marcy and I stayed with the boys. While I didn't love splitting up, it was actually beneficial.  Throughout the week each parent/child got some time together.  I think it actually worked out really well. Tom got this picture while we were in the Pirates League.  Since we were in such a hurry to make our 11am appointment, we never got any other photos of us in front of the castle.  So, we saved that for Friday.



As soon as we went into the Pirates League, I regretted not signing up Harlie for this, too.  I didn't realize they did girls, too.  And they were super cute!  Honestly, I think Harlie would have enjoyed the pirate experience more than the princess one.  Ugh!!!  The feeling of regret is awful when I was supposed to make this a vacation of a lifetime!  If we get the chance to go back, I will definitely do this again and let Harlie join in on the fun.

Cooper, Murphy and Kaden waiting.
This was really fun.  The first thing they did was get their own pirate names.  They had some way of doing it by rolling dice or going by their birthday or something.  Then they selected which kind of pirate they wanted to be.

Murphy with Jack Sparrow and...?
Murphy getting all done up...




Murphy taking his pirate oath.  The pirates took their roles very seriously.



Cooper
After they were all done, they took us into a "secret" room and took photos of each pirate.

Roger Bloodshot
(aka Cooper)

Ben Pillagefish
(aka Murphy)


Tom Plankgunn
(aka Kaden)
They really loved it.  This was really fun.  Definitely worth the $35 for the basic package.  I thought it was money well spent, and would highly recommend it. Murphy ended up loving it and he was the one that wanted to wear his pirate gear every day.  By Friday, I had to put my foot down and make him leave it at the house.

After we left, we met back up with Tom and Mike and had lunch.  Unfortunately, we were never able to work out meeting back up with Mike and Laura and their girls.  There was just no way we could coordinate rides with our DAS and Fast Passes.

The Fast Passes can be scheduled ahead of time (via an app on your phone) or at the time of arrival at a ride.  The DAS can only be scheduled at the time of arrival at a ride.  You arrive at the ride, show them your DAS, and they write down a time for you to return.  Honestly, the DAS wasn't very helpful.  It's definitely more difficult to use than a Fast Pass since you can't schedule it ahead of time.  And you have to physically go to each ride twice.  And you can't go to a ride, get a time to return, and then go to another ride while waiting, to get another return time.  You can only get one return time at a time.  Which is frustrating considering the more work it is, the less a person using the DAS can experience.  The whole change in how they treat people with special needs is pretty sad.  It really makes me mad at the horrible abusers.

There still are some very kind cast members, thankfully.  And with our switching of the kids throughout the day (so the boys could ride rides that Harlie couldn't) we accidentally forgot to handover the DAS.  So, at some point in the afternoon, I had Harlie and didn't have her DAS.  I went on ahead to some rides (like the Winnie the Pooh and Peter Pan ones) and told them that I didn't have it because my husband had it and they looked at Harlie, and said, "That's okay, just go straight on in."  And they let us go into the Fast Pass lane with nothing and no wait!  So, that was really nice.

It was rainy/misty all day.  And we didn't have proper clothing on for that kind of weather. So, we had to buy a couple of hoodies.  Harlie's pants got wet and she signed "wet" and pointed to her legs.  Then she signed that she wanted to change them.  Well, that wasn't going to work, obviously. So, I went to get her a poncho to keep her dry.  She flat out refused to put one on. And, trust me when I say that when that girl makes up her mind, she makes up her mind.  It can be pretty frustrating. So, her pants got wet. And she got over it. No poncho for her. Which left us $8 to spend on something else.

We sought out covered rides.  Just like everyone else at the park.



After a while, Murphy looked like a zombie.  Sometimes, you just gotta let some things go.

The teacups.
 I don't know how I got this shot of Tom.  Pretty neat, though.


By the end of the day, when Harlie was getting low on oxygen, I was pretty disappointed in the DAS system.  We were trying to get on the Seven Dwarfs Mine Train (a roller coaster that Harlie could ride).  When Tom showed the cast member our DAS, she said to come back in an hour.  He told her that Harlie's oxygen was getting low and asked if there was anything she could do to make that wait time less, and she said no.  That's where the system is broken.  I tried really hard not to let it get me angry.  We put Harlie on the lowest flow of oxygen to keep her sats okay, and try to extend the life of the tank.  The whole thing felt so wrong.  But, she seemed okay and we made it so she could ride it and she was happy.  Sometimes you have to work really hard to let things go, so it doesn't ruin your fun.

On our way out, we caught a parade.  It was fun.


And apparently some fellas danced with Olaf.


We left at a decent time and went home for dinner.  The guys made fajitas, with a big bowl of guacamole.  Yum!

Each night the kids would rush to get in some pool time and Harlie would go up and watch a movie in the movie room.  She got on a Toy Story kick, and watched all of them that week.

After the kids were in bed, we hung out in the hot tub.  It was perfect because it was definitely cold at night.  That night, I wasn't feeling great.  So I went to bed earlier than the others.  I kept thinking about our day, and how we weren't able to be together as a group. That bothered me and so did the whole "no, I don't care if you run out of oxygen" attitude.  Granted, running out of oxygen would have been our fault. But, it was not possible to carry two tanks with us the whole day.  And going back to the car to switch out the tanks would have been a nightmare.  We tried it their way and it didn't work. Clearly, we were going to have to go back to guest services the next day and figure out something that would work better.

I woke up at 1am feeling very nauseous. Weird. Got up and vomited.

Awesome.

Hoping it was just a fluke, I went back to bed.  I woke up an hour later and the same thing happened. Trying my best to forget about it, I again, went back to bed.

Then, at 3am, the same thing happened!  Except this time was WORSE!  I was unable to grab my hair out of the way quick enough.  So, I vomited in my hair.  More awesome!  I didn't even earn this through partying all night and making poor decisions!!!  What gives?

So, it's now 3am and I had to take a shower.  And wash my hair.  Like three times.  Which means my hair will be wet.  Unless I blow dry it.  At 3am, when I clearly feel like crap.

Blow drying my hair takes effort and energy I didn't have.  So, I put my wet hair up in a bun, and went back to bed, wondering if I would be able to make it to Animal Kingdom that day.

Somehow, someway, (I'm chalking it up to Disney Magic) I woke up at 6am, feeling okay.  Not great.  I mean, you can't vomit three times in the night and feel great.  But, I certainly didn't feel as bad as I feared.  I don't know what that was.  But, thankfully, it was short lived.  It was a horrible night.  But that was it.  Whew!

Off to Animal Kingdom!  Day 4 coming soon!

Thanks for reading!
~Christy xo

Sunday, March 1, 2015

Disney World, Day 2

This won't be much of a post.  So, I'm sorry I took so long to post it.  I've had very little nursing in the past two weeks and the kids have been home so much because of the snow.  So my days haven't been very productive.  Repetitive, yes, productive, no.

Day 3 was our first day to a park, so I'll have a better post later about that.  But, for Day 2, Sunday, we didn't have anything planned.  Which, is how we wanted it.

The Steelers played that day.  So, Tom found a Steelers bar not far away and the guys went there to watch the game.  Laura, Marcy and I stayed "home" with the kids.  After just lounging around and enjoying the lazy time, we took the kids to the water park in the neighborhood.



It was a great water park.  The water was heated and the kids had a great time. There was a lazy river section, where you get on/in a tube and float around.  Harlie wanted to go in it so badly.  But, it was deeper, colder (not heated) and had a current.  There was no way I felt comfortable enough to take her by myself.  I would trust Tom could handle it, but not me.  I saw disaster all over that.  So, I had to tell her no.  I know she doesn't understand how risky stuff like that is.

If Tom had been at the park that day, I would have had him take her down a slide.  She so wants to go down a water slide.  But, that scares me, too.  Too risky by myself.

Regardless, I think she still had fun.  It makes me nervous, though.  I have to walk beside her most of the time.  If she's in water that's too deep for her to sit in safely, I worry that she'll fall while walking and submerge herself.  Of course, she doesn't understand all that and resists holding my hand.  Oh, the downsides of a trach...

After the football game, the guys went to Costco and stocked up for the week.  I think we had frogmore stew (shrimp, scallops, sausage, corn, onions and potatoes).  Yum!

This was our view for most of the week (when we were at home, I mean, and not at a park).


The guys did most of the cooking (and pouring) and we sat on the other side of the island, enjoying drinks, food and company.  It really was a glorious vacation.

More soon!
~Christy xo

Friday, February 6, 2015

Heart Cath #8

Hi!  Harlie and I drove up to DC today for Harlie's heart cath.  I think this is number eight for her.

It was a crazy morning, as usual.  I don't know why I tell you so much about my life that might not be pretty (or outright embarrassing).  

Anyway, Tom loaded my car this morning and made me an egg sandwich to go.  So, I loaded Harlie up and we left right after Tom and the boys left to walk to school.  Before I got out of the neighborhood, I realized I forgot to leave some money for Kelly (my niece).  She is helping with the boys and the dog since I am away (and helps me throughout the week, too).  So, I turned the car around and headed back home.  But, I happened to see Tom with the dog headed back towards the house on a different road.  So, I thought I'll give him the money so I don't have to get out of the car.  So, I turned around again to get to him.

Then I headed out again.  After a few minutes I started to eat my egg sandwich.  And the yolk spilled out on my sweater.  Of course I didn't have any napkins.  As I'm driving, I feel around my console and find a glove.  So, I tried to use that.  So not pretty!  I took the next exit and went through a drive through for some napkins.  After rubbing some napkins on my sweater, the napkin fell apart and left a bunch of white fibers on my sweater.  It looked worse!  After leaving that parking lot, I turned right when I should have turned left.  Ugh!  I just could not get myself straight!!!  

While I was waiting to make a u-turn, it hit me that I didn't put the suction machine in the car.  Oh heavens.  So, I called Tom and asked him if he put it in the car.  No.  Unfortunately not.

This day was not off to a good start.  I think it's safe to say that I am officially out of practice of trotting off to the hospital.  Overall, not a bad thing.

After sitting at the red light for a minute I reasoned with myself that we hardly ever actually use the suction machine anymore.  Now that she's capped so much during the day, we go days without needing it.  So, I just had to get to the hospital, and then I'll just have to make it home.  Should only be a few hours total without it.

On the way up, I talked to my friend Mike about the HOV (it's now a toll road, and I didn't know how that worked).  So, he gave me the details and I told him about my morning.  He told me I should just stop at Target and grab a sweater.  Exit 143, he said.  So I did.  I ran in, grabbed a sweater and ran out.  Quickest (and cheapest) Target trip I've EVER had.  

Made it to the hospital and checked in.  All's well.  Then I take Harlie to the restroom and I look in the mirror.  I have egg in my hair!  I ran through Target, with egg in my hair!!  I checked in, with egg in my hair!!  Geez.  I'm a mess.  Sometimes, I don't know how I do so well by Harlie.  She's where all my good stuff goes.  Then Tom and the boys.  I get the crap that's left over.  Which leaves me with freaking egg in my hair.  Maybe it's time for a hair cut.

So, we got all settled and waited for them to take us back.  Heather, our social worker, came by and brought Harlie a TMNT blanket.  She said she's been saving it just for her!  Isn't that so sweet?!



Oh, and we had another first today.  During the drive up, Harlie told me she was hungry.  This is the first time she's ever told me she's hungry before a surgery.  I was thinking it might happen.  So, I set my alarm for 3am so I could tube her a can of food before the cut off time of 4am.  I am so glad I did that now.  Maybe that helped a bit.

They had an emergency, so we were delayed getting taken back.  We were supposed to go at 11am, but didn't go until 2pm.  All that time and Harlie was SO good and SO patient!  Other than telling me she was hungry a few times, she didn't complain.  But I was STARVING.  I thought I was going to pass out or kill someone.  I struggled, for sure.  At one point she pointed to her heart and said, "heart." So I said, "Yes, you're having a heart procedure." And then she said, "Where's the doctor?"  I had to chuckle.  She was ready to get the show on the road.  I am totally loving this more mature Harlie-girl.  She is really growing up.  

They let me go back with her.  And I stayed until she fell asleep.  She was amazing!  Didn't cry, complain or fuss.  She climbed over from the stretcher to their table.  And was totally comfortable doing so.  My how things have changed.


After a few hours, her doctor came out and gave me a report.  Last year her pressures measured 24 (which is on the high side).  This year, her pressures measured 17!!!  Woohoo!  What a great improvement.  We'd love for her to be under 15, but I'm totally happy with 17, all things considered.  He will give me a detailed report in a week or so.  But, I think he said that her lung numbers were the same as last year.  But, overall, her sats were higher today than last year.  Which totally makes sense considering she was on oxygen last year, and she's not now.

Yesterday I took her to her pre op appointment with her pediatrician.  He said she looked the best he has ever seen her.  Her social worker and doctor said the same thing today.  She really is doing fantastic.  She's energetic, playful, and engaging.  She's a completely different kid than she was last year at this time.

As hard as it was to make the decision, and accept that she shouldn't attend school, I think it paid off.  She's the healthiest she's ever been.  I can't help but think that everything is related.  Now I am so glad we did it.  I still wish we could have it all - health and school.  But, when forced to choose between the two, I'd choose health every time.

So, a great report!  I'm happy.  And, even though she's not allowed to bend at the waist (for six hours following the heart cath), Harlie's happy, too.


Her nurse bandaged up Mikey just like her.  So cute!  She's asking for water and TV.  So, all's well!  We will stay overnight and head home sometime tomorrow.

And Kelly shared this pic of Murphy from today...


I didn't even know he had a loose tooth!  Murphy and I went to his future middle school last night for a curriculum fair.  He has an elective and can choose between a few things.  So, he talked to some girls who are in chorus now.  They were so darn cute!  And very excited about chorus!  One girl said, "You get to go on field trips to Kings Dominion!"  He said, "I like what I'm hearing." He cracks me up.  He also listened to a girl from strings, and the band teacher.  He said "no way" to foreign language.  I think he's leaning towards band.  I can't believe he's going to be in sixth grade next year!
Anyway, that's it for tonight.  Thank you for all the love today!

Much love,
~Christy xo

Sunday, February 1, 2015

My dream.

I had a dream last night.  It's been on my mind all day.

I was in a children's hospital.  I don't know which one (we've been in four).  But, in the dream, somehow I got separated from Tom and Harlie.  And I didn't have my cell phone with me.  So I couldn't call Tom.  And I couldn't remember why we were there or who we were seeing.

Was it her heart?  Her lungs?  Her back?  Her GI system?  ENT? Craniofacial?  Infectious Diseases?

So many departments!  How was I ever going to find them?

I was just walking around the hospital, feeling so overwhelmed.  And LOST.

And then I walked into a waiting room (I have no idea which one) and I saw my dear friend Susan, her husband Steve, and their daughter, Ainsley.  They live in Washingston (the state) and if we were to ever be in the same area, I hope we would know about it and we would see each other.  So, the likelihood of us just running into each other is highly unlikely!

The next thing I know I am waking up from a nap in a hospital chair, thinking, "Why am I sleeping?  I need to be finding Harlie and Tom!  But, I'm SO sleepy!"  The chair.  The hospital blankets.  So incredibly familiar.

Then I woke up.

At first, I thought it was funny.  But, after just a few minutes, I realized it made me sad.  It's sad that there are SO many departments that we have to deal with.  It's sad that there are so many doctors, so many hospitals, so much history.  IN. JUST. EIGHT. YEARS.

I wonder if having this dream has anything to do with the fact that on Friday, I got her date for her heart cath (scheduled for next Friday, Feb. the 6th).  It will be in DC.  As much as I want to be able to stay here for as much as we can, I just don't think I'm ready.  I'm afraid to make a change where a change isn't absolutely necessary.  It's kinda brainless going to DC.  I know it.  I know where she'll go after the cath (the heart and kidney unit).  It's "the floor" for cardiac kids.  It's where she'll go if she doesn't have problems and doesn't need the ICU.  I know the rooms have a TV, with movies and a remote control.  And they have a bathroom with a shower in the room.  It's comfortable for her AND for me.  There's also a playroom right down the hall for your kid to get toys, games and books to play with while they're in the hospital.

These are not things we would get if we stayed here.  There is no heart and kidney unit.  There is no "floor" for Harlie.  If she's not in the ICU, she would be in the Progressive Care Unit, which is one big open room with patient beds separated by curtains - and it's horrible.  It really is.  I mentioned the remote control earlier because you are lucky if you get one when you're there.  And you still have to hear the television in the spot next to you, just inches away, separated by a curtain.  I swear one time, the parent next to us was watching Jerry freaking Springer at 11pm.  I wanted to kill myself.  I've heard other parents burp and fart.  All while hearing children cry, cough, throw up - and every beep on every monitor or piece of equipment in the entire unit.  It's enough to make a mom go crazy.

Please know I'm not talking about the care you get while there.  I love our local hospital and our doctors.  But, that particular unit's environment is horrible.

So, I stay when I can, and I go when I have to.  And that leaves us without a "home" hospital.  Which kind of explains part of my dream.  Sometimes, it hits me hard just how many challenges Harlie has to live with.  Even while I'm sleeping.

Much love,
Christy xo


Thursday, January 22, 2015

Disney World. Day 1.

Day 1 - Saturday, December 6th

Our flight left at 8am from Richmond to Orlando, direct.  Our friend Chris was nice enough to get up super early in the morning and drive us to the airport so we wouldn't have to pay for parking.  So nice!  Thanks Chris!

We flew Southwest and it was, by far, the absolute best flight EVER.  First of all, we were beginning our Disney vacation.  So, it was probably going to be the best anyway.  But, Southwest took it up a bunch of notches by entertaining us the whole way down.

Here are some examples:

1.  During the safety briefing, when they discuss the life vest, the guy said, "and in the event of a water landing... gooooood luck."  Followed by, "Swim to the nearest land and we'll be right behind you with the beer and liquor."

2.  At one point he was talking about traveling with kids, and he said something like, "If you're traveling with one child"...something or other (I don't remember) and he went on to say, "If you're traveling with more than two children... what were you thinking?"

3.  Out of the blue (after there had been some minutes of silence) he announces, "Ladies and Gentlemen, I just saved 15% by switching to Geico."

4. "We will be turning the lights down so hopefully you will rest and not bother us."

5.  During takeoff, he broke out into song, singing, "Rolling...  Rolling down the runway."  Everyone started clapping and singing "rolling" when it was our turn.  It was hysterical.

6.  When we landed, they said, "Whoa, Nellie!" and played a sound effect of a horse clopping.  It was really funny.

The entire flight was entertaining from start to finish and these are just a few I can remember right now.








We traveled there with our friends Mike and Marcy and their son Kaden.  Maggie (my niece) was supposed to go with us, but her grandmother passed away a few days prior, so she couldn't leave then.  It felt so weird to be so excited about this trip when Maggie and her mom's family were feeling something entirely different.  Maggie's grandmother was a wonderful, kind and fun loving woman.  She will be very missed.

Once we landed in Orlando, I took Harlie to the bathroom.  When we were leaving the bathroom, a girl was coming in and looked at Harlie and said, "Oh hi Harlie!"  I was so surprised!  I didn't know her, so it was crazy that she knew who Harlie was.  Can you imagine?  She went on to introduce herself to me and she said that she went to high school with Tom.  Small world!

Then, we called our friends Mike and Laura (and their girls Vivian and Chelsea).  They flew down from Pittsburgh the night before and were there waiting for us.  So, we all met up, went and picked up our two rental vans and headed to lunch.

We went to lunch at a restaurant called Columbia.  It was really good.  They made a pitcher of sangria at the table and it was delicious and the perfect way to start a vacation.



Then we walked down the street and found a fountain.  The kids were not dressed appropriately to play in a water fountain.  But, that did not stop them.  My boys were in jeans and tennis shoes and they got soaking wet.  We let it go because, well, we were on vacation.  As my friend Jenny said about her recent Disney vacation, "It was a week of yes's."  And we started then.  They had a blast, and we had fun just watching.




Then we headed to check in at the house.  And oh, what a house!  This place was amazing!





















Renting this house was awesome.  It insured that no matter where we were (at a Disney park - or at "home") we were guaranteed to have fun.  Best. Vacation. Ever.

I set up an oxygen tank delivery with an Orlando medical equipment company.  It was a little confusing because I gave the rental company the wrong address.  After a stressful conversation with the delivery driver (not his fault since I had no idea where he was or it's relation to the house we rented) we got it straight and all was well.  I did panic there for a second since it was Friday and delivery had to happen that day.  It all got worked out though.  Whew!

So, when we arrived at the house, the oxygen and other equipment I rented was already there and ready to go.  So nice!

The rest of Saturday, we hung out in the house and let the kids explore and play and swim, of course.



Harlie was ecstatic about the movie room.  Seriously, she loves her movies.  And the guys went shopping to stock up for the week.  It actually makes me sad to think about it.  I so wish I could be back there during that time.  You know, when the rest of the week is ahead of you.  Best. Vacation. Ever.

Day 2, coming soon!

Much love,
Christy xo