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

Wednesday, January 21, 2015

A little of a lot.

Since it's been so long since I've updated you on Harlie, I'll start there.

Her heart

It has been over a year since her last heart cath (it was in December 2013).  I feel like a lot has changed since then, which is good. She had her pacemaker adjusted and she's been able to spend some good time on room air. I'm hoping that means good things for how her lungs are doing.

So, right now I'm working on getting a date for a heart cath soon. I didn't want to have to worry about it with our Disney trip in December. I thought it wasn't smart to get it done before - what if something happened during the cath that would've prevented her from going or what if we got bad news?  So, we decided to wait until after the holidays.

It's interesting to look back at my decisions sometimes. In 2013, I wanted her to have the heart cath, despite the fact that it was done on December 13th. I could have thought it was too risky to go into the hospital so soon before Christmas - what if something happened during the cath that would've prevented her from being home for Christmas or what if we got bad news? Instead, I had hope and thought, what if they can do something that could get her off the oxygen before Christmas?

I think I'll always have a glimmer of hope.  But, I also think after eight years of reality slapping me in the face, I can't deny that things don't always work out the way I want them to.  Let's just say that I've gotten a lot of practice in learning to live with disappointment.

Her back

Anyway, another area I need to work on is her back.  The last time we saw her orthopedic surgeon (a year or two ago, I can't remember) she said that when Harlie complains about back pain regularly, we need to do something. She really did not want to do another surgery.  She would rather wait until she grows more (like when she turns 12 or so). But, if Harlie is in constant pain, waiting wouldn't really be an option.  The pain is most likely due to the area in her spinal fusion that became infected. The infection forced her surgeon to remove the bone graft and didn't allow for optimal healing.  Doesn't this just look like it could be painful?


It's so gnarly because after it got infected, they had to put a wound vac in it for several days.  And she had to go into the OR several times for debridement.  It was a horrible time.

Anyway, at this point, she complains about back pain almost every single day.  Some days are really bad and she might tell me that her back hurts ten times. For a while I asked her if we needed to go to the doctor and she would say no. Until one day, she said yes. That means she's pretty serious.

Then, when we were in Disney, I noticed that she would sit in her wheelchair while leaning to her left.  And, about six months or so ago, she stopped using alternating steps while going up or down the stairs.  We worked really hard in physical therapy and at home to remind her to take alternating steps.  And for a while, she would point out to me when she was doing it without being asked (so she was proud of herself).  But then it just stopped.  And she absolutely refuses to do it.  Period.

So, something is up. Darn it.  So, I'm working on getting that appointment scheduled, too.

Sleep Study

Another thing I need to think about is getting a sleep study date.  We've been toying with doing this for years and have yet to accomplish it. I'm pretty sure that my reasons for/against a sleep study are more complicated than I would like them to be.

We've been able to cap her some lately, which is nice. And the other night she asked to sleep with her trach mask around her nose and mouth instead of it being around her neck. I took advantage, and switched the trach mask for a face mask and capped her.  That way she would get what she wanted, and oxygen, too.  She fell asleep like that just fine and maintained good sats for a while.  But, I had a hard time sleeping knowing that she was capped without proper monitoring. So, around 1am I got up and took the cap off and returned her to a trach mask. She was making some noise (almost like snoring - definitely some obstruction noise), but her sats were at 84 instead of 91. Not sure if that means anything really. I just don't know.  I suppose we should do it, just to get some sort of data, if nothing else. But, I'm just not excited about anything having to do with it.  And decannulation (getting the trach out) isn't that simple. She has so many other issues.  I'm just afraid (among other things) that it might complicate another thing or that it will be temporary.  Anyway, far too deep of a discussion for today. So, as usual, I put off the decision for another day.

Hearing Aid

We finally got in to see her audiologist a few weeks ago.  We haven't seen her in far too long. But, as it turns out, it's been FIVE years since she got her very first hearing aid.  I can't believe it.  It almost feels like it happened yesterday. Anyway, she's due for a replacement.  Apparently they don't last much longer than that.  So, she got a mold of her ear and got to pick out another aid.


She puts this foamy stuff in her ear and lets it harden.  Then pulls it out to send it to the company to have the ear piece made.


She picked out a pink hearing aid (the one she has now is purple).  It should come in soon.  Oh, the things we find exciting!

Nursing

Another new thing for us is our nurse, Terri is back.  Harlie was happy to see her.  Terri hasn't worked here in a little over a year.  We missed her. We also made another change and let the nurse that was sharing the week with Brandy, go. I can't go into details, but I just felt like I had no other choice.  We've been so incredibly lucky with our home health nurses that I've never really felt like complaining about having nurses that much.  I mean, the requirement of needing them totally sucks and I don't know a soul that would argue with me there.  But, we've had such wonderful people that I've always felt good about it. They allow me to live as normal of a life as possible and I am eternally grateful for that.

But, home health nursing is a weird arrangement. The nurse is employed by a company. But they work in a patient's home. So, as a patient's mother, I am not their boss.  But, I have a say in what they do with my daughter. It is such a gray area. And when you want to make a change in nursing staff, you tell the agency, who then tells them.  There is no notice given to the nurse.  Which stinks for them. I shouldn't have to explain that it's just not smart to give a nurse notice. It puts the patient and patient's family in a vulnerable position.  But, typically in this business, there usually is another family who needs help.  It always seems like there are more patients than there are nurses.

So, making this change back to Terri wasn't as well received by one nurse.  And she sent me a horribly ugly message a couple of weeks later.  It was upsetting to read. It's clear she didn't like me and judged me poorly in a number of ways.

Think about that for a minute.

Someone was in my HOME for over a year, and was a caregiver to my child with limited communication abilities (whom I love more than words could convey) - and didn't like me.  Judged me.  Doesn't that sound horrible?  One should never have to have someone like that in their home.  I feel so violated.  Can you imagine having someone in your home watching you parent?  And judging how you live your life?  Ugh!  It's an awful thought! As if our life isn't painful enough anyway.  I keep thinking about some of the things she said and how we never asked for any of this. I wish we never needed a nurse. I love our nurses, but I would have been perfectly happy having three healthy children and never meeting them in the first place.

So, for now, I am done with strangers.  I would rather go without than having to start over with someone new right now.

Independence

On Monday, the kids didn't have school.  And we didn't have a nurse scheduled.  So, after Harlie's teacher came in the morning, I took all three kids - all by myself - to the mall.  I've never done that before. Harlie got a Build a Bear gift card for Christmas and all three had some Christmas money to spend.  So, we went and Harlie picked out Mikey, the TMNT, of course.


And Cooper picked out Toothless from How to Train Your Dragon.



Then, we went to Toys R Us and let them spend the rest of their money.  Murphy picked out two Disney Infinity characters, Cooper picked out some Trash Pack things with what he had left over after getting Toothless, and Harlie picked out a Baby Alive baby with a toothbrush and toothpaste.  They were all very happy.  Then we went home.  Success!  It's times like these - just being a regular mom, and not a special needs mom - that I've lost.  I'm ready to do more of that, and less medical stuff.

Feeding

Oh, and I almost forgot... another milestone for Harlie! I think I can officially say, that after eight years, Harlie finally knows what hunger is.  Wow!  She will tell me that she's hungry and will let me feed her.  YAY!  It doesn't happen every feeding, of course.  But, I will take it!  I'm very happy about this development.

My nephew

I've been able to spend some good quality time with this little guy lately...


His name is Chase, and he is my younger brother and his fiancee's baby.  He's about to be six months old. He's super cute.  And I've been keeping him a couple of days a week for the last few weeks.


Harlie took this picture.
She cracks me up.
Harlie loves him and helps me throughout the day.  She gets me his clothes and diapers and wipes.  And always makes sure he has a toy within reach. Last night, I wanted to get a pic of the two of them together.


And she decided she needed her eye patch.


And he clearly thought she was crazy.


Rooney might be a little jealous.


Or he saw that my arm had no support, so he came to my rescue.  Either way, he's such a good dog and is so tolerant.  Chase likes to grab his hair, and he just takes it.  Just another reason why Pugs are so great.  Man, I love that dog!

Okay, I think that's all I can do today.  Chase will wake up from his nap anytime now.  I have another post already started.  I am trying really hard to work this blogging thing back into my life.  I missed it!

Thank you for reading!
~Christy xo

Wednesday, January 14, 2015

Disney World. Thank You.

Ahhh, Disney World.  Where do I begin?

First, I want to say thank you.  I have struggled for weeks thinking about what I was going to say in this post.  I mean, how do you begin to thank people for this kind of generosity!?

I do not think I will ever be able to convey how great of a gift this was for our family. To all who supported this trip and helped make it happen in any way, we will remain eternally grateful for your love and generosity.  We had an absolute fantastic time and we have a boat load of wonderful memories to keep forever. It was a wonderful week on so many levels.  Harlie did great, and only needed oxygen now and then versus all the time.  And, I suppose we have the Disney magic to thank for this, but she had NO accidents the entire time we were there!  It was a Disney miracle!

I am excited to share more details.  But, that will be a longer post for sure.  So, I'll start with this message of gratitude and just a few pictures.  I am going to try very hard to post more often now, with shorter posts.  It's my new year's resolution.  And today's the 14th.  Not a great start.  But, it IS a start.  And sometimes that's the hardest step.

Here we are at the castle at Magic Kingdom.  This was taken on Friday, our last day.  The first day we went to Magic Kingdom was Monday, but it was very rainy that day.  So, no pics.  But, despite the cold temperatures and the rain, we still had a wonderful time.


This is our entire group.  What a fun bunch!  Everyone was so helpful with each other and with Harlie.    


This was later on that evening.  The lights were on, and it was beautiful.  Later on, Queen Elsa "froze" the castle and it was awesome.  I'll share those pics later.


This was a magical moment - Harlie meeting Princess Tiana.  She is the princess from The Princess and the Frog.  She was the only person (or character) that Harlie wanted to meet.  Period.  We got so lucky and arrived at her spot right after she stopped for a break.  The cast member manning the line told us we had to wait an hour till she came back.  Then Laura said, "Well, my girls don't need to meet her, but Harlie really wants to."  And then she stepped aside and let him see Harlie.  He looked down at Harlie in her cute little wheelchair and paused.  Then he said, "Okay, go to the exit and you can meet her."  Yay!  So, we were the only ones there and she took her time with us.  I just can't say enough wonderful things about that woman.  She was so warm and caring towards Harlie.  I had to hold back tears the entire time we were with her.  Just look at this picture!  Harlie is making eye contact with her - with no instruction to do so.  It was so incredibly amazing.



Isn't she beautiful?!
When we were leaving her, I tried to get Harlie to sign "Nice to meet you."  So, Princess Tiana got down on Harlie's level and finger spelled it back to her.  That's over Harlie's head (for now) but she saw that she was signing and we were blown away.  It was a wonderful, wonderful moment.  I give Laura all the credit for making this happen.  Harlie was saying "no" to meeting everyone until Laura asked her and then made it happen.  She was a master at navigating Disney.  I gave Laura a list of what I thought Harlie would enjoy and she made it happen!  Thank you, Laura!

I have so many more photos and stories I want to share.  But, I will stop for now.  And I will try super hard to post again tomorrow.

Much Love,
Christy xo



Sunday, November 23, 2014

Disney World

You might remember this post from last fall.  It's funny, because when I just re-read it, I actually thought we could go to Disney in February.  Hahahaha!

So, over a year later, the trip is planned, booked and is exactly two weeks from today!  Wow!

We started planning it within a few months of receiving this wonderful gift. We quickly learned that you need to plan it months and months in advance.  Tom worked with his friend, Celeste, who is a Disney planner.  After many emails back and forth, finding a place on property proved to be very difficult.  For one, we need more than just a single hotel room.  We are taking our niece, Maggie with us.  She is trained to help us take care of Harlie and she is a Disney fanatic, so it was a no brainer that she had to come.  So, three adults and three children, one of which has equipment that runs all night.  The bigger hotel rooms are very pricey.

The other issue is that we have to have a Plan B for Harlie.  We know she gets fatigued easily and quickly.  Even if it's something that she enjoys.  She knows her body and what it can do, and when it needs rest (most of the time).  Celeste did a great job talking us through things. For example, at first, we didn't think the resort where we stayed was all that important.  I mean, it's Disney, all of them are good, right?  But, she realized that when Harlie got tired and we went back to the resort, that's where we would hang out.  So, then a zero entry pool became more important.  More on why that was so important in a future post (which I've already started, so I promise it's coming).  Then the thought of hanging out in a hotel room to get a true break (hanging out in a pool with Harlie is hardly relaxing, especially without a zero entry) wasn't very appealing.

Another challenge was travel.  We were originally thinking we would stay at a resort on the monorail. But, one of the major resorts is under construction and she said that it was making the monorail kind of iffy sometimes.  She said it would be better if we had a car we could rely on when needed vs. depending on the monorail and being up the creek if it wasn't working.

In the end, there were too many obstacles.  And if you know me, you know how much I hate planning.  So, Tom found a large house just off property.  It has a heated pool, with a large wading area, which will be great for Harlie!

And we are sharing the home with friends (two families, Mike, Laura and their two girls, who we have spent spring break with the past two years and Mike, Marcy and Kaden) which made the rental home more affordable for all of us.  A win-win all around!

Once the house was booked, we purchased our plane tickets. Woohoo!  But, we still couldn't talk about it openly because we had not told the kids yet.  There were a few times that we almost slipped and said something about Disney with them in the room. I was afraid I would mess up, so I really wanted to tell them.  Plus, I wanted them to look forward to the trip.  I wanted the anticipation of the trip to be part of the fun.

So, the weekend after Halloween, we had Mike and Marcy and their son, Kaden come over for lunch.  Marcy and I made a sign, and then cut it into puzzle pieces.  Tom hid the pieces around the house, and the kids had to find them, then put them together to read the message.


Ahhh, parenting. I had this vision of how things were going to go when we told them.  My vision was awesome.  And I was SURE it would go just the way I imagined it. First, it took them longer than I thought it would for them to figure it out.  Harlie and Cooper can't read yet, so Murphy read it aloud. They all looked at us and said, "Right now?"  And we said, excitedly, "No, in 34 days!"  And they all looked VERY disappointed and exclaimed, "Awwww!"  At that point, Harlie turned around, headed to the living room, and asked if she could watch TV.

Awesome.  To us 34 days is no time.  But, to them, 34 days might as well be never.  Murphy seemed to be the most excited.  And he did hop around a bit.  It really only took a few minutes for it to sink in.  And then Tom pulled up the photos of the house we rented so they could see where they'll be staying.  That really helped.  And, of course, the Mickey ears helped, too!


And, as usual, Harlie had to put them on the dog.


Every day since, we have been counting down the days.  And the kids have been watching Disney parades on Youtube.  If their faces - from just watching the videos - are any indication, we are going to have a fantastic time.

I managed to book Harlie and Mike and Laura's girls appointments at the Bippity Boppity Bootique salon so they can be the princess of their choice.  And I booked appointments for all the boys at the Pirates League.  That's about all the pre-planning I could muster.  It's a little intimidating to see that people have already booked fast passes for rides.  And for specific times!  Seriously?  Thirty days out, you already know where you're going to be at a certain time?  I don't know about you, but I don't call that a vacation.  And with Harlie (especially now since she's sick) there's no way I can predict where and when we'll be somewhere.

So, we are going about it differently.  We are going to go with no real expectations, other than to just have fun and enjoy the experience.  We will be happy with whatever we can do. And the house and the amenities that come with the house (like a water park) will hopefully mean that no matter where we are, that we'll have fun.  We are all so excited!  I think Tom is more excited than anyone, though.  He researched the heck out of restaurants (I think this is his favorite pastime activity) and he made a reservation for an adult dinner out.  I'm pretty sure he will know the menu by heart by then.

If you ask Harlie who she wants to see while there, she says, "Mickey."  So, I just can't wait for that moment.

Of course now we are all a bit nervous because she must have caught whatever I had.  She's now sick, and has been for a week.  We took her to the doctor last Friday.  He put her on antibiotics.  And we have been giving her a lot of vest and breathing treatments throughout the day.

A week later, after her walking downstairs with no oxygen, these were her numbers...


The 73 is low even for her.  But, her spirits are good.  She's not playing - just watching a lot of TV.  So, as long as she's not miserable, I am going to think positively.  We called her doctor to let him know that she was not better.  So, he called in a different antibiotic.  So, we'll see if that one works.

The big bummer is that even if she gets better before we go, she will most likely still need to be on oxygen.  I'm hoping I'm wrong.  But, I seriously doubt that her lungs will recover 100% and be able to function completely free of oxygen support.  So, that means that we will be lugging around oxygen at Disney.  And that means that we have to have oxygen available to us while there.  Disney will not help us with this since we are not staying on property.  So, we are on our own.  I asked our supply company if they could help.  Another hiccup will be that the companies in Florida will not likely accept Virginia Medicaid. So, we'll have to pay cash for it.  But, that's okay.  I think it's worth it. ;-)

I am still not well.  It's been FOUR weeks now.  I am so tired of feeling tired and being unable to run or work out at all.  I've heard that the cough will likely linger for a while longer.  I'll deal with that. I just would like to have some energy back.  I do think my lungs actually feel a bit better now.  I got out the child's large vest that they sent for Harlie (that was too big for her) and got some vest and breathing treatments myself.


Harlie got such a kick out of seeing me go through the torture, too.  Now I understand why she resists the vest treatments.  It's pretty unsettling and uncomfortable.  But, I think they work and are much more appealing than having to go into the hospital.  And I fully believe that the vest has kept Harlie healthy.

Unfortunately, we weren't able to go meet my new niece, Maggie this weekend.  So, Tom took the boys and went to his mom's in PA.

Mandy's baby, Maggie.
I am totally bummed.  I would have loved to have held her, too!  Since that left just me and Harlie, her nurse, Dawn, came to stay with us this weekend to give me a chance to really rest.  There is no resting with kids around all the time.  So, that's been really nice.  And last night Marcy went and got soup for me, brought it to me and then walked Rooney for me!  I am so lucky to have such wonderful people in my life!

Okay, well, that's it for now.  I'm working on my next post already.  So, hopefully I'll be able to do that today.

Thank you for reading!
Much love,
~Christy xo