Tuesday, September 25, 2012

Happy Birthday Harlie!!

Wow!  SIX YEARS old!!!  Hard to believe.

I remember sitting in that doctor's office when he told us that she had a 5% chance of being born alive.  I liked my doctor.  He was really nice.  And he was giving it to us straight, which was exactly what I asked him to do.  Somehow she made it.  And with MORE problems than he knew.  She really is something...

One day, I'll have to share the details of those days.  I had not yet started to blog then.  But, I did write.  In a journal.  You know, with a pen and paper?  For the entire pregnancy.

Her birth was a crazy, difficult time.  And it is really weird to "live" in a hospital setting during a time like that.  For one, there's NO rest.  None.  And there's tons of walking.  Exactly what you want when you've just given birth.  And when you're in there, that's all there is.  It's as if the world outside those walls simply don't exist.  All of your focus, attention, energy and brain power must be devoted to what all those doctors and nurses are telling/asking you.  And getting to know your baby?  Well, that just had to wait.

Yes, her birthday is bittersweet still.  But we are so lucky.  More and more years are put in between that day and the present.  And there are more good memories, than bad.

Here I am sitting bedside her first few days.  The critical airway sign above her bed meant we couldn't hold her.  We had to wait till they gave her a trach - three weeks later - before we could hold her.


I remember taking these next two photos on Day 3.  I knew they would be the last photos of her body with no scars.  She was just under five pounds.



Since she was rushed to Children's from the hospital next door where I had her, there was no time to officially name her.  So she was "Baby Girl Holton."


Post-op from her first open heart surgery.... just four days old.


But look at her now...


Okay, maybe a couple of weeks ago.  She still had her cast.  Anyway, here she is post-op again - 30 surgeries later...

She is one happy little girl.  And we are so thankful!!

Happy Birthday Harlie!  We love you!!!

Thanks!
~Christy xoxo

Sunday, September 23, 2012

Good stuff

Thursday night was back to school night at Harlie's school.  I can't remember if I mentioned it or not, but we made those "My Name is Harlie" books again and gave one to each student in her class.  It is weird to walk into a room and know that everyone knows who you are, and you not know anyone.  I just want to hide in situations like that.  So, I was a little nervous about going.

Anyway, I was shocked to hear that they said she was doing really well (for her, anyway).  It is so hard to find something to motivate her to do something she doesn't like, or something that she has to work really hard to do.  Most kids would be motivated with some M&Ms or goldfish, etc.  But, that won't work for her, obviously.  So, she makes her teachers work really hard.

So, I couldn't believe it when I saw this...


How freaking cute is this little robot?!  Her HH (hard of hearing) teacher said that the class drew these robots together, following instructions like, "draw a square in the middle of your page."  She followed all the instructions with no problem!  Woo Hoo!!!

They have a Doodle Diary they have to write a word in and draw a picture of every morning.  Here are her drawings so far...





I am so proud of her!!!  That monster is colored like Sully from Monsters, Inc.  Which makes me feel a little bit better about an incident on the playground the other day.

Harlie's nurse texted me to ask me if she could tell a little boy to go away if he was bothering Harlie.  He called her a monster.  I told her, yes, please tell him to go play elsewhere if he can't be nice.  No one would argue with that.  But then she said that a little girl that was sitting there told the little boy that she wasn't a monster.  And he went away.  Terri said that she didn't think Harlie was paying any attention to him.  Of course, it's hard to tell because it's normal for HH kids to look away when they don't want to "listen."  But, I'm hoping that maybe when she heard the word "monster" that she thought about Monsters, Inc.  Maybe?  Either way, she didn't and doesn't appear to be upset about it.

The next day Terri said that the same little boy came up and asked her a bunch of questions, like "can she talk?"  Terri said, "yes, if you listen very carefully, you can hear her."  Terri said that it looks like he has some issues he's dealing with himself.  So, we're cutting him some slack.  He could certainly have challenges that you can't see.  And the fact that he's asking questions is good.  He's curious.  He doesn't understand what's going on with her or what it all means.  He's probably never seen a trach before.  And once his questions are answered, he'll probably feel a lot more comfortable around her, and won't call her a monster.

But, before I learned that I went to the CCAkids website.  Earlier in the month I saw on Facebook that September was National Craniofacial Acceptance month.


So, I think I might make a flyer about why kids tease (info provided on that website).  And I think I want to do something next year since she'll be in first grade.  Even though these kids have already been introduced to Harlie in person, or through her book we provide to the classes "My Name is Harlie" the questions will change as the kids get older.  As they grow, and become more aware, they will notice more, or different things and their reaction will change, too.  They always seem better when their questions are answered.  So maybe I can make things easier with a little flyer.  Plus, even parents of typical kids could benefit from that information.


I've had some requests to put something on the blog, too.  So, I'll try to work on that.  The bottom line is that I want to do everything I can to make school a better experience for her.  I haven't been able to protect her medically - maybe I can make up for it, emotionally.

We had Murphy's back to school night the week before.  Here is a drawing we found in his desk...


I think it is so cute!  He drew himself walking Rooney.  He's wearing his favorite skeleton shirt.  Rooney's leash is green and the little bag carrier is blue.  I think he did a great job!

Speaking of Murphy...

Murphy's first day of 3rd Grade.  

Murphy holding a snake Tom found in the yard.
Murphy and Harlie during a walk.
This was a really good moment at home... Murphy and Harlie doing their homework together.  They kept on giggling and getting distracted with each other, but I loved it.


A couple of other things...

I secured some awesome private speech therapy for Harlie and her first session is tomorrow!  I was definitely worried about this.  I know that Harlie could really benefit from someone who can use Talk Tools.  They are plastic shapes that help teach her how her lips should form to make certain sounds.  Her last speech therapist used them on her and it was really good for her.  But, I thought for sure that she would be booked.  She's awesome and it's always hard to get on a schedule with a therapist in high demand.

So, I called and emailed her.  And not only did she find us a slot - but she hooked us up with another ST that is further along in her Talk Tools training than ours.  So, the two STs will be working with Harlie at the same time!  They even added a session in their day to accommodate Harlie.  I just can't believe it.  My conversation with her was great.  She believes in Harlie and her ability to learn how to overcome her challenges.  I am constantly reminded how lucky we are to have such great therapists in our life.  Thanks, Amy (ST), Allison (Feeding) and Traci (PT)!!!

Unfortunately, these STs are private - so no insurance.  And these hard working therapists do not come cheap.  So, for people wondering what we do with the money that is raised through the We Heart Harlie fundraisers - that's a huge part of it.  If you've donated before, you are helping teach Harlie how to TALK!  There's just no way we could ever thank you enough for that gift!!!

We now have our follow-up appointment to go to Boston.  We go on October 19 (also where the We Heart Harlie money goes).  Hopefully they will be able to make us feel better about where we are and where we go from here.  I think we are going to have to spend the night.  Considering our history with the airports, I think it's too risky to have to rush - especially on a Friday - and we don't know exactly when we would be able to leave the hospital.

Well, I think that's enough for this post.  I finally downloaded the photos from our camera (from the hospital) and will post some next time.

Thank you so much!
Christy xo

Thursday, September 20, 2012

Thank you!

This is just a quick post to say thank you and let you know that I'm much better now.

But first, I want to thank all of you of who commented on my last post, sent me emails, messages, called, etc.  We are so blessed to be surrounded by such wonderful family and friends.  I just can't imagine living this life without your support.  After writing that post I felt so... exposed.  And even though it was weird to talk to someone who read it (it felt like they were looking into my soul) everyone was so good to me.  I really do feel like we are so lucky in so many ways.  So, thank you!

I also want you to know that I am feeling better and stronger now.  I will always be sad about what's been lost and what battles we've fought and will continue to fight.  I know that will never go away.  So I have to learn how to live life with those feelings.  And be happy despite them.  I try so hard to focus on the positive.  But, some days it's harder than others.  And the past few days were really hard.

But, as they say, time heals... and that's true.  And just being with Harlie makes me feel better.  She really is such a happy kid.  We've started focusing on her communication device again.  They are bringing home letter books and I am teaching Harlie how to "read" the book with the device.  That has been awesome.  And I'm excited to get the next letter book to see how she does.  Wow, how different things are already this year!  

I have so many more positive things I want to write about, but I need to get to bed.  Hopefully tomorrow I'll be able to upload some pics and tell you more about what's going on.

Oh!  And I want to thank all of you that have already registered for the We Heart Harlie 5k.  We're so excited to see everyone!

Much love,
Christy xoxo

Monday, September 17, 2012

Some days are just hard.

I hate to do this.  But, I cannot help that it is what it is.  And that this is not going to be an uplifting post.

We are struggling right now.  Harlie's first Daisy meeting was tonight at 6:30.  It is now 6:49 and we are still at home.  She is struggling on the potty.  Despite the fact that she gets almost exactly the same amount of formula and water each day, she is struggling on the potty.  WTH?!?!?

I know she wants to go to the meeting.  And I'm sure she is going to be really disappointed when she realizes that she missed it.  How the hell do I explain that to her?!  This is killing me.  I would rather her fall in the street and get a skinned knee than have her miss her first Daisy meeting because she's stuck on the potty.  We deal with pain on all levels in this house and I am so, so tired of it.  Why does everything have to be so freaking hard?!?!?!?  Can't she have anything normal?

It doesn't help that we are at our wit's end with her drooling.  I have to pack her two backpacks every day - one for her medical supplies and school folder and one for her extra clothes and burp cloths (which she carries around with her to wipe her mouth).  She is going through 10 to 20 shirts and several pairs of pants per day.  The laundry adds up quick when you're going through that amount of clothing.

I emailed her surgeons to ask about the drooling.  I didn't hear what I wanted to hear, which was that it would take x amount of weeks, and then she would be able to swallow again.  Although, I knew in my heart that I wouldn't hear that because one of her surgeons said they wanted her to eat soft foods, like pasta as soon as possible after surgery (to get her to move her jaw).  Of course I told him that she's never been able to eat solid foods (which was part of the point of the surgery in the first place).  So, clearly not being able to swallow isn't normal.

One surgeon said that because her back teeth touch before the rest can overlap - an open mouth posture happens.  So, it's even harder for her to close her mouth and lips.  Try to swallow with your mouth open.  Seriously, try it right now.

Yeah, it's impossible.

And thinking about it makes me sick.  I was unloading the dishes earlier today and I opened the cabinet where her squeeze bottles are (the ones that she drank out of).  I looked at them and wanted to cry.  It took us YEARS, countless hours and more energy than one should ever have to give, to get her to the point where she could eat pureed foods and drink her formula.  And now she can't.  Simply cannot.  And it makes me so sad.  Today I watched Cooper eat a granola bar while standing next to Harlie, who was drooling.  No words to describe those feelings.

Oh, it's 7:05 and she's done and wants to go.  I hate to go late, but I simply can't tell her no.

It's 10pm now.  It's just been a rough day.  A rough month.  A rough six freaking years.

Just so you know, I'm not a crier.  At least not because I'm sad.  I cry at commercials, movies, when I laugh, or when someone else cries - but typically, I don't cry much.

So, I put Harlie in the car and we go to her Daisy meeting.  I get her out of the car and one of the moms happens to be in the parking lot getting something from her car.  She comes over and says hello and asks me how I'm doing.  And I started to cry.  Ugh.  I didn't want to.  But, I was just so overcome with sadness for Harlie.  For how much she has to deal with.  For how much we have to deal with. For how incredibly hard it is to do normal things.  I can't tell you the effort that goes behind everything we do!  And the drooling.  It just makes everything THAT much more difficult.

It's the proverbial straw.  We've handled and dealt with so much, but it's the drooling that's going to push us over the edge.  But, what are we going to do?  Stop dealing with it?  Well, that's not an option.  Tonight one of the girls sat next to Harlie and squealed, "Ewww!" when she drooled.  I know.  I get it, sweetheart.  It's gross.  And I don't blame you for thinking that.  But she can't help it.  And it breaks my heart.  Then they started to play duck, duck, goose.  Not exactly the best game for a kid who can't talk or run.  But, she didn't care.  And she did it.  She didn't sit in the right place when her turn was over.  And one of the girls said, "That's okay, Harlie, you can sit wherever you want to."  And I wanted to cry all over again.

The reality of knowing that there will be no true break (from heart break or the physical demands) in the future is exhausting in itself.  No weekend away would ever be able to touch the heaviness of all that's involved with a child like Harlie.  We've left the medically fragile intensity of years past and entered the emotionally difficult phase.  With medical oddities and challenges thrown in.  And when I find myself asking God to make things easier for us, I take it back.  Because I know it won't ever be easier.  As long as she's here, she's going to have challenges to deal with to try to overcome, or accept.  So I tell God, never mind.  Just give us the strength, okay?

I am trying to be patient.  And hopeful about this surgery.  But to be honest, right now, I hate to say it - but I regret it.  There, I said it.  I wish we could go back in time and change our minds.  I know her jaw was only holding together by a piece of scar tissue, but it was better then.  She could swallow and she was able to verbalize so much more.  We did this surgery to gain function.  We want her to have the ability to swallow, chew, speak and breathe without the trach.  But we have less function now than we did prior to surgery.  It's heartbreaking.  And I don't know how they are going to fix it her open mouth posture.  If it were easy, they would have done it while they were in there.

I have to go.  I know this was a sucky post.  And I'm sorry.  But I also know that we'll find a way. We love her so much.  She's worth whatever we need to do to give her the best life possible.  She didn't ask for any of this.  And she's still happy.  If she can do it, then so can I.

Much love,
Christy

Thursday, September 13, 2012

We Heart Harlie 5k Info

So, here's the scoop on the 5k... click on the flyer to see it better.

And you can register online here.  How cool is that?  I would say I feel so high-tech and all, but I didn't have a thing to do with it.  And if you don't want to run it, but want to help, they made an option for that, too.  It's pretty cool...

Many thank yous to Paul Caminiti, Founder of Team Adrenaline and Lynda Reider for organizing this and doing all they do to help our sweet little girl!!!

And thank you to all of you that have already registered!  It is so fun to see who's excited about this 5k!!

We hope to see you on Sunday, September 30 at 8am at Deep Run High School!

Much love,
Christy xo

Quick Update

Oh, starting this post so late.  So, I will try to be quick.  Just wanted to let you know that Harlie had her first day at school today!!  She continues to get better and stronger each day.  Either Sunday or Monday was the first day she didn't need any supplemental oxygen.  And tonight marks the third night she hasn't needed it.  Woohoo!

She clearly felt better and stronger, and so I thought it was time to send her to school.  We started her on a Wednesday so she wouldn't have the whole week to get through.  And I picked her up at 11am today.  She will have another short day tomorrow (easing her into it) and then a full day on Friday.  I just didn't want to push her too much, too quick.  She's only really walked in the house - so I didn't want her to have to walk all over the school and cause her to go back a step or two in her recovery.

We went to the DC zoo on Saturday.  Every year the Children's National Heart Institute (in DC) throws a social function at the zoo for their heart patients and families.  We haven't been able to go in years.  But, I really wanted to make it happen this year.  The event is from 10am to 2pm.  The last time we went, we didn't get there until after noon.  I remember thinking that I wanted to plan better next time.

So, this year, I packed everything (okay, mostly everything) the night before.  My goal was to leave the house by 8am.  I guess it's been just long enough since my last trip into DC that I forgot just how bad traffic can be on a Saturday.  Ugh.  Although it didn't help that we didn't leave until closer to 9:30!!!  Unfortunately, we suffered a hiccup when I went to get Harlie up.  I realized that her cast had gotten soaking wet from her bath the night before.  She woke up crying and tugging at the cast signing "off" over and over again.  I didn't want to, but we were forced to cut it off.  There was no way we could let her leg stay in a wet cast - especially with a really long, fresh incision that needs to heal.  Luckily, the hospital had pre-cut the cast for us (but left all the padding and lining intact) so we could remove it after two weeks or when we thought she was ready.

The cutting of the padding took a lot longer than I thought it would.  It didn't help that she was NOT cooperative.  She just doesn't trust.  Period.  There's just no calming her.  So, when you have scissors next to a moving leg, you have to be careful.

After the cast came off, she wouldn't put any weight on it at all.  She went from being independently mobile, to immobile.  Right before the zoo.  UGH!  And her leg was no longer protected.

We went anyway.  I am determined to do normal family things!  Sometimes I don't make the best decisions.  Traffic was awful and it took us well over three hours to get there.  So, we arrived after noon.  Again.  Sigh.

It was good to see the friends, nurses and doctors that I saw, though.  That hospital knows us the best.  And I feel comfortable around them.  And for some reason, I don't want them to forget us.

After the zoo, we went to Potomac Mills.  Tom had a brilliant idea to stop at the Lego store there on the way home.  It was a fabulous plan, because even though the zoo wasn't the best (a lot of exhibits were closed, and we weren't there that long) they were thrilled with the trip to the Lego store.  They each picked out one Lego toy and then we headed home.  Despite the hiccups of the day, it was a good trip overall.

Back to her leg - so what to do about the cast?  At the time, I was thinking she needed another cast.  But, the next day she walked a little in her walker.  I e-mailed her doctor in Boston and he said we could try an airboot first.  That would be a lot less traumatic.  But, by the time I could've done that, she was walking even better.  So, we never did.  It looks like she just didn't need it.  She's now walking without the walker and doing well.

I was very nervous to send her to school with no protection - but she really seems fine.  Although, it still wasn't easy to send her on the bus this morning.  Oh, sometimes she seems so SMALL!!!

But the bus situation is awesome this year (so far, anyway).  Right now, she is the only one on the bus!  So, that means that she gets picked up here and goes straight to school.  This morning she got on the bus at 6:57am and was at school at 7:14am.  But, no one can be there before 7:20am.  So, the bus driver is going to come later tomorrow.  I would have never thought that she could take the bus in the mornings, too!  I am thrilled!

I know that might sound weird.  Especially to all the parents who chose to drive their kids to school instead of letting them take the bus.  But, for one, Harlie has Terri to look out for her, so I know she's okay.  And two, those early years kids love to ride the bus.  After that, not so much.  So, I say take advantage of the time that they love it.  It is so short!  Plus, when the bus isn't an option and your kid is going to a school outside their district/zone/whatever, it kinda changes your perspective a little.

Okay, it is way too late.  Tomorrow I am going to post all the details about the We Heart Harlie and Team Adrenaline 5k and 1/2 mile kids' run!  So exciting!!

Much love,
Christy

Thursday, September 6, 2012

Adjusting

Things are okay here.  Harlie isn't letting the cast stop her, that's for sure.  She seems more and more energetic each day.  She's definitely still dealing with some pain.  And it's always on her right side behind her ear.  The drooling is awful.  Truly, truly awful.  I don't know how she's going to go to school like this.

Speaking of... I've decided to ask for homebound services for her, until she can go to school again.  She still needs the supplemental oxygen several times a day.  I'm so surprised considering how much she is up and around.  But, we take her off for a little while, and then check her sats to see how she's doing.  If she's hanging around 80, we put her back on.  If she's higher, we give her a little more time and then check her again later.  When we put her to bed tonight (Wednesday night), I was hoping she'd be in the 80s, but she was in the high 70s.  Ugh.  We'll just see how tomorrow goes.

The past few days have been an adjustment for me.  She seems to be adjusting faster than I am!  School started on Tuesday.  I really wanted to walk with Murphy to school.  But, school started for our nurse's kids, too, but they go later than my kids.  So, she can't get here till later.  I was hoping to get Harlie up and walk her down, too.  But, that didn't work out.  In fact, I was upstairs with her when Murphy went outside and Tom took pictures.  Ugh.  I feel like I missed it all.  I know I shouldn't complain.  Heck, I didn't know if I would even be home for the first day.  I should be happy!

But, it was still sad to see all the kids, all dressed and excited for the first day - especially siblings - that were going together - and knowing that Harlie wasn't one of them.  I don't think I'm ever going to be good with the fact that Harlie can't go to school with her brothers.

Cooper will go to preschool four days a week.  But, he doesn't start until next week.  Personally, I think that's insane and just plain cruel to the parents, and the kids.  WTH?  Why couldn't they start at the same time??

So, after Murphy left (on Tuesday), I spent most of the day walking in circles around my house looking at all the stuff that I was supposed to be doing - unpacking, putting away, washing, etc.  I literally did NOTHING.  I had no focus and no energy.  Today (Wednesday) wasn't much better.  But, I did manage to bring down the dirty laundry, sort it and start washing it.  So, that's something.  I just can't seem to start something AND finish it in a reasonable amount of time.  It's not only frustrating, it's terribly inefficient.  At one point I looked around and the soap was on the counter for the dishwasher, but I didn't get to put it IN the dishwasher and start it, the sheets were washed, but were not on the bed, and there were clothes in the washer, but the door wasn't shut.  It all just seemed too hard to do.

For some reason this morning (Wednesday), I wasn't handling Harlie's drooling so well.  I was thinking that maybe I should get her to drink by mouth.  Maybe her seeing the squirt bottle, and knowing that she needs to drink it would make her swallow it.  But she just squeezed some formula in her mouth and then it just sat there.  Ugh.  I couldn't make her swallow it.  I would tell her and she just shook her head no.  I got the feeling that she is scared that it will hurt if she swallows.  Frustrated, I called our feeding therapist.  We've had her since Harlie was just a few months old.  She knows us.  And she knows her stuff.  I left a message, thinking that she was probably with patients and who knew when she'd be able to call me back.  But, it must have been divine intervention - because she just happened to have an opening in her schedule, so she was able to call me right back!

It was so good to talk to her about this.  I brought her up to speed with how she's been doing and what's changed about her mouth.  One thing I forgot to blog about was a conversation we had with Harlie's oral surgeon.  She said that now that Harlie's teeth are aligned, because of her abnormal mouth shape, her back teeth touch before any of her other teeth touch.  So, that means she can't close her mouth.  Maybe I didn't blog about it because I didn't want to think about it.  The chain reaction of that fact is not a good one.  And I don't know what that all means.  Other than more surgery, obviously.  And more challenges in her speech and eating progress.  One of the functions I was hoping to gain was the ability for her to chew food.  I would think chewing would be more difficult with a mouth where the back teeth touch and none of the others do.

Anyway, the bottom line is that everything about her mouth is different than it was prior to surgery.  So, she's going to have to re-learn how to swallow and handle food in her mouth.  Plus, she still has some swelling.  And pain.  She said that if she can't swallow her secretions, then she's not going to be able to swallow a drink, or food.  So I need to give her more time.  I was thinking she was just being stubborn.

She also said that she just had major surgery.  And I had to laugh.  It is sad that she can have a major surgery like that and that I am expecting her to be back to herself (and maybe even improved) so soon.  What's considered serious vs. minor is so skewed in my mind.  You've been home for four days, Harlie, geez, what's your problem?

So, I need to have more patience.  And I need to give her more time.  And I need to get her back into feeding therapy.  She's going to do whatever she can to get us back on her schedule ASAP.  I felt so much better after talking to her.  I don't always know what to do.  And I am so glad that I have some good people in my corner to help me figure this stuff out and make the best decisions we can for Harlie.  And when I'm feeling down about things, I remember people like our feeding therapist, and that reminds me how lucky I am.  We have such a great support network - in every way.  Support in our spirits and support in the technical/medical aspects of raising Harlie.  I just couldn't do it without you all!

I certainly didn't expect immediate results from this surgery.  I promise!  I know it will be months and months (if not a year or more) before we know if this was successful for what we wanted it to accomplish (eating, breathing and speaking).  But, I certainly didn't anticipate an open mouth (that couldn't close) and the inability to swallow.  One could think swallowing should theoretically be easier if her jaw is more aligned, and pulled out of her airway.  But, it's not that easy.  And for future reference, it's never going to be that easy.

I'm trying to keep myself from being too scared of the future and from being disappointed so far.  I guess I just didn't realize we'd be taking 10 steps back.  I'll be okay with that if/when she makes 15 steps forward.

Our feeding therapist gave me some good questions to ask the surgeons about her mouth.  So, I need to get that e-mail out.  One thing he said we needed to do was to make sure that she opens and closes her mouth a lot to keep that bone in her TMJ from over-fusing (which wouldn't allow any movement).  But, we are struggling with that - and have no idea if she's opening it enough (as in actual opening distance vs. quantity of openings) or not.  And with her continued pain, I'm a little scared that some fusion has already started.  I don't know.

But that's one thing that our feeding therapist said she would help me with, too.  She said she'd show me how to get some regular mouth/jaw exercises in her day.

Speaking of exercises and therapy, I need to call her physical therapist, too, and get her back on her schedule.  Even though she's walking around well in the cast, when it comes off, she's going to be weaker in that leg.

So, look at the chain reaction of jaw surgery - decrease in ability to swallow, need to add feeding therapy back in our schedule, decrease in leg strength, need to add physical therapy in our schedule, decrease ability in verbalizations for communication, need to add/increase speech therapy in our schedule, can't attend school and need to add homebound services.

I know she looks great and all that good stuff, but all I'm trying to say is that despite all the positiveness, it's still hard right now.  It's just plain hard.  I want her to be able to talk to me!  I want her to get a break from pain and surgeries!

I try to be as positive as I can every day.  And I have since the day we found out that things were going to be rough for her (May 5, 2004).  But it is a challenge balancing out finding the positive, and being sad about our reality.  I mean, no one can be positive about everything all of the time, right???  But, then again, being sad about it doesn't really do any good, either.  I just wish we could be nearing the end of surgeries for her.  But, it doesn't look that way.  So, every time we go through it, we know it isn't our last.

Okay, it has taken me DAYS to write this stupid post and now I feel like it's all choppy and doesn't flow.  So I need to just end it.  And I really hate to end it with me complaining.  I really hate complaining.  I have so much to be thankful for.  So, please know that I know it will get better in time.

And when Cooper goes to school next week, maybe I can back to running again.  That usually makes me feel better.  Not immediately, of course.  Because usually running hurts while I'm running.  But, afterwards, I feel better.  I am not one of those runners that runs with a big run all energetic and all like, "Oh, look at me and how good I can run!  I'm all bouncy and fast and I'm so good I don't even need water!"  Nope.

I'm more like, "Oh God, it's hot.  It's so freaking hot.  I can do this!  One foot in front of the other.  Great, I'm doing it and feeling good about myself.  Ouch, my back kinda hurts.  Okay, big arms.  Faster arms means faster feet.  Land on my toes.  Keep my knees up.   Look straight ahead.  Chin up.  Think strong.  I can do this.  Beeeeeep!  What?!  It's only been ONE mile?  Are you kidding me????  Shit, it's HOT!  I need more water.  Cars are passing.  Can't walk with cars passing.  Damn!  What's up with this stupid traffic!  Oh, light please turn red, please turn red.  UGH!  I hope I don't pass out."

Then, I finish.  And get home.  And then I'm, "Oh, I am so glad I got that out of the way in the morning before it got too hot.  Whew!  Good run!"

Runners are stupid.  No, not really.  Most of the time, even when I'm cursing for most of the run, there's something that I actually enjoy.  I just don't know what it is exactly.  Do I enjoy hurting myself? I don't think so.  I certainly don't enjoy it in any other fashion.  I guess it's that it IS hard and somehow I do it and feel stronger because of it.  And I just think that if I feel strong physically, that somehow I'll be strong mentally and emotionally.  Because unlike the run, I don't have a choice in my daily life.  I HAVE to be strong for Harlie and for my family.

That's it.  Now I really gotta go and get some sleep.  I hope to have a much more focused post next time.  Thanks for reading!

Much love,
Christy xoxo

Monday, September 3, 2012

Airport Adventures...

First of all, we are HOME!  All is well, except that Harlie still needs oxygen support.  I find this rather unusual, given her history of surgeries and how her recovery has gone.  We're on post-op day 9, you'd think she would be back to normal by now.  I guess we'll see how she does in the next few days.  If she's not better by mid-week, I might have to go and get another x-ray or something.

Anyway, our trip home was full of adventure (aka stress, to me).  My daily life is adventurous enough, I really don't need any more.

We were ready to go on Saturday.  But we had to wait for the guy to deliver the portable oxygen concentrator.  He was due to arrive at the hospital around 2pm.

He arrived a little after 2pm and went over the instructions.  It is a small machine on wheels (like a piece of luggage).  And it came with a black neoprene-like material bag that holds two back-up batteries and the power cord for the concentrator if you have access to power.  Each battery lasts several hours (+/-) depending on how much oxygen it's churning out.  So, we knew we'd go through at least two batteries to get home.

We packed up, signed all discharge paperwork, got prescriptions and left.  We had to take a cab back to the hotel.  I had already checked us out, but I had them store our luggage there, since we were still at the hospital.  There is a phone out there that when you pick it up it automatically connects you to some cab dispatch place.  We were in a cab in just a few minutes.

The hotel is .9 miles from the hospital.  And we had been walking, biking or running between, so we knew how long it took to get there.  However, Labor Day weekend is move-in day for all the area colleges and so it is a BUSY day, with tons of moving trucks double parked, and furniture all over the place.  Traffic on the way to the hotel was at a standstill.  We should have walked.  But, it would have been cumbersome with her chair, and the oxygen concentrator, both on wheels and needing to stay close together.  And we just didn't realize how bad the traffic was going to be near the hotel.  Plus, when you walk it/run it, you can go directly there and not worry about the one way streets or the "no left turn" signs apparently placed at every corner on the way to the hotel.  Seriously.  We could see the freaking hotel and couldn't get there.  It was agony!  And it was expensive!  Lesson learned there.  We should have loaded the luggage in the complimentary shuttle and brought it to the hospital.  Especially since the hotel was in the complete opposite direction from the airport.  So, after Tom ran in to the hotel to get the luggage, we had to turn around and go back past the hospital to get to the airport.

So, FINALLY we arrive at the airport.  It is now 4pm.  Our flight leaves at 8pm.  PLENTY of time to get through security and relax a bit before getting on the plane.  Right???

We tried curbside check-in, but the guy told us that we couldn't do it there because of the oxygen.  So, we walked in and went to Jet Blue full service.  No line.  Sweet!  As we start walking with our luggage, my luggage wheels break.  One wheel falls apart and it magically turns into a square shape, which doesn't roll easily.  Awesome.  We go to the open counter and start the process.  The guy says, "Do you have a letter from the physician for the oxygen?"  Um, no.

Crap.

Oh wait!  No problem! I'll just call Shanda (our nurse that day) and ask her to fax one over.  Easy.  I use my smart phone (couldn't live without one) to look up the number.  I think it was right about that time that I look around and say, "Tom, where's the bag of batteries?"

Shit.  They are in the cab.  Which is far, far away by now.

NOOOOOOOO!!!!!!!!

So, he says, "Do you remember the cab company?"  Um, no.  He said, "I think it was Boston Cab Company."  Okay, great.  Call it.  I think back and remember that at one point, the TV screen in the back of the cab flashed, "You are in cab number 1222."  Or something like that.  I know it had three 2's in it.

Tom looks up the number and calls.  Someone answers and he asks, "Is this Boston Cab Company?" The person says, "Yes" and Tom proceeds to tell him we left something in the back of a cab.  Then they guy confesses that it is not, in fact, Boston Cab Company.  Ugh!  We don't have time for this!

So, Tom tries again and gets the right company and tries to explain the situation to the woman who answered.  I hear him say, "We left a piece of luggage in the cab that just dropped us off at the airport."  I raise a brow at his choice of words for seriously needed medical equipment, but don't say anything.

While he's doing that, I'm on the phone with the nurse asking her to write me a letter and prescription and fax it to this obviously newer employee, Brian.  Brian gets me his fax number.  All is well.  It will be taken care of.  Easy.  No worries.  Although Brian is clearly nervous, and keeps shifting his weight from one foot to the other.  Left foot.  Right foot.  Left foot.  Right foot.  ARGH!!!

Except something is wrong with their fax machine.  They bring me several pages of garbled up text (clearly from Boston Children's).  They hand it to me like, okay, ball's in your court people.  WHAT?!  I mean, did they seriously expect us to be like, well, okay, we tried.  We'll just have to fly home another day....

Give us another solution, people!!!  So, I ask if they have a different fax machine.  Like, one in security, by chance, who might know what to do in this case???  Somewhere further than the freaking front door of the airport!!!!!

In the meantime, Harlie is drooling like crazy.  The poor girl can't swallow her own secretions.  So her shirt is soaking wet.  And we have nothing to wipe her mouth with.  Luckily, they had not checked in our luggage yet, so I opened it up and got her a couple of extra shirts.

Oh, and there was a family at the counter next to us and the little girl was looking at Harlie and back at her mom (repeatedly) like she was really stressed about something - and she was crying.  Under normal circumstances I probably would have thought that meant she was a sensitive person, but at this particular time, it was pissing me off.

After concentrating on the fax machine problem for a couple of minutes, I look at Tom and say, "So, what did she say? Did she find the driver?"  He says, "She's working on it.  She's calling him and she'll have him call us."  Yeah, right.  Would you be confident in that kind of communication chain????

Keep in mind that Harlie's been on this battery since around 2pm and we are watching the battery bars decrease. ARRRGGHHH!!!!

So, we continue with the fax machine problems.  I swear, no exaggeration, that poor nurse had to have faxed those pages AT LEAST 15 separate times.  I'm feeling terrible about that.  I'm mad that the case manager that arranged the oxygen concentrator didn't know that we needed this paperwork, and I'm pissed that the cab company doesn't understand the gravity of the freaking situation.

The Jet Blue guy tells us that we can't have our seats in the front row (that we paid extra for) because we have to put the oxygen concentrator under the seat in front of us.  And there's no seat in front of the front row.  So, he bumps the people in the second row and puts us there.

Harlie has to go potty. This should be fun.  I leave Tom with our luggage at the ticket counter, and head to the potty with Harlie in the chair and the oxygen concentrator in tow.  Taking her potty was no easy, task, let me tell you.  But, after 15 minutes, we got it done, and returned to the ticket counter fiasco.

In the middle of the Jet Blue employees giving us at least five different fax numbers, I ask Tom, again, where we are with the battery/cab situation.

Me:  "Did she find the right cab?"
Tom: "Yes.  You had the cab number wrong.  It was 2221."
Me:  "Whatever." "Did you tell her it was medical equipment?"
Tom: "YESSSS CHRISSSSTY."
Me:  "Okay, I just didn't know.  If she understands how important it is why haven't they called yet?"
Tom:  To the Jet Blue employees, "What?  ANOTHER fax number?!?  What freaking century is this??!?!?"
Me:  "Harlie's soaking wet.  Again."

Then Tom's phone rings and he walks away.  I hear him explain the situation, again.  Then I hear him say  (with a raised voice, which NEVER happens when he's talking to someone other than me or the kids), "Ma'am, STOP TALKING. STOP. TALKING.  LET. ME. FINISH.  It is in a black bag, near the spare tire. It might have gone up under something."  Time passes.  Then he gives me the thumbs up.

YESSSSS!!!  THEY FOUND IT!!!  HALLELUJAH!!!

In the meantime, the Jet Blue employees are still struggling with the fax machine.  I finally break.  I say, "We aren't going to need this letter if that cab doesn't get that battery here soon, because I'll have to call 911 and have to have her taken back to the hospital!!!"  They perk up.  All of a sudden they are very attentive.

Then I finally come up the brilliant solution to plug the concentrator in. I'm a freaking genius!!! So, as soon as he's off the phone, I say to Tom, "Hey, where's the plug?"  And he says, "In the bag with the batteries."

I'm completely deflated.

Tom:  "The driver found the bag but he has a person in the cab that he has to drop off, then he'll come back to the airport."
Me:  "Great.  So, where is he?" (as in, how long till he gets here?)
Tom:  "I don't know."

Fabulous.

Then the Jet Blue employees say, "We got it!"  And a new guy (to the situation, I mean) says, "Normally, we require the letter explain the beeps from the machine.  So, do you know if it beeps when the battery dies?"
Me:  (with a look that says are you effing kidding me?) "I don't know.  We've never used this before."
Him:  "Well, we're going to let it pass this time."
Me:  "Thank you.  Thank you very much."

We head to the only place on this side of security that sells beer.  And wait for the cab to return and save us.

Now, I have to admit that most of this was our fault.  We should have called to check on the requirements.  Heck, I could have posted on Facebook to all my special needs moms and would have probably received several answers that could have saved us all a bunch of stress.

But, we are not perfect.  And we were tired.  It happens.

We ordered drinks and some food and waited.  Tom's phone rang and he ran to the front door to get the beloved batteries.  WHEW!  There was one bar left on the machine.

Now, to security!  OMG.  It's now 6pm.

Thankfully, we get to go through the priority line.  And everyone in security (as has been the case, every single time) was super nice and understanding.  And we get through with little fuss.

On towards the gate.  And I breathe a HUGE sigh of relief.  There is a kid play area (scary germs, oh no).  But how in the world do I tell Harlie no????  Seriously?  I would challenge anyone to tell that girl no in this instance.  We make it work.  Tom helps her from thing to thing and plays with her while I sit and gather myself.

Then I have to take her potty again.  Oh, give me strength.

All through everything - Harlie has not complained.  Not. One. Little. Bit.

She is my hero.

We go to the Life is Good store in the airport and buy her a t-shirt.  I change her shirt.  Again.  And we buy her a little Jet Blue plane that pulls back and goes forward and makes noise and blinks lights.  I'd buy her anything if she wanted it.  But she rarely wants anything.  She loves the plane.

We head to another restaurant and order more drinks.  Harlie plays with her plane and we sit by the window to watch the real planes.  Her oxygen concentrator beeps.  Time to change the battery!

It's finally 7:30pm, and we head to board the plane.  We get on and get settled.  We take off.  We are in the air.  And I crash.

I mean, I was DONE.

Whatever was getting me through the last two weeks, and was allowing me to be energetic and positive, and allowing me to run 6 miles (and say they were enjoyable) was gone.  GONE!  And I was left as a shell of my former self.

I closed my eyes and fell asleep.  Until Harlie woke me up to tell me she had to go potty.  Again.  That was fun, too.  Then I fell asleep again.  Until Harlie couldn't find anything on TV to watch.  So, I gave her the iPad and put a movie on for her.  Then I couldn't get the icom thing to work (the thing that allows the sound to go directly into her hearing aid - like headphones).  So I gave it to Tom to fix.  Because he can pretty much fix anything.  Which he does.  So, I give it to her and fall asleep.  Again.  Until Harlie wakes me up to tell me she has to go potty again.

Tom takes her.  And I want to die.  Seriously.  I am being tortured here on earth and don't know what the hell I did to get such a challenging life.  Being that tired will make you think some crazy things.

We land in Richmond at 9:15pm.  Home.  Sweet.  Home.

We get our bags and Tom's luggage wheels break.  For real.  One of his wheels falls apart, and now it is square as well.

Seriously, I couldn't make this stuff up.  How I haven't completely fallen apart is a mystery to me.

We walk like zombies to the car.  Now, I understand that 9:30pm isn't that late.  Heck, on a normal night, it's early!  But, like I said, I had no life left in me.  It might has well been 4am.

We load the car, back out and leave.  Tom told me to close my eyes and sleep and he would be fine driving home.  So I did.  I can't tell you how rare that is.

We got home around 10:30pm, Murphy was up waiting for us.  We unload the car and get Harlie's room set up for her.  We haven't had to use her oxygen or humidifier in months.  I could barely function.  But we got her in bed, and left everything else for the morning.  As I was falling asleep in my own bed (paradise!) I tried to ask Tom if the baby monitor was on.  It came out all garbled.  I really wasn't myself.  I can honestly say that I don't remember ever being that tired.  That spent.  The worry and stress over the oxygen wiped me out.

None of our nurses could work that night, which sucked.  I was very concerned that I wouldn't wake up if Harlie needed me.  Apparently, that was true because Tom said he got up to suction her once.  I had no idea.

The next morning, Tom couldn't find the suction machine.  Huh.  That's super weird.  That machine is always with us.  We all look everywhere.  NO suction machine.  FOR REAL.

As I try to think back, I know I had it at baggage claim, because I had to suction her.  So, we had it after we got off the plane.  Then I vaguely remember as we were loading the car, Tom saying, "the suction machine is behind you."  That means that it's on the ground, at my feet, so I need to get it and put it in the car.  He couldn't put it in the car, because I was standing in the way.  We put it on the floor, at Harlie's feet.  Since I was getting her in her car seat, he put it on the ground.  This is normal for us.  Except I was in a walking coma, and shut her door, then opened my door and got in and never gave it another thought.

So, the suction machine was in the parking lot at the airport.  Awesome.

I seriously can't believe it wasn't on the news that there was a suspicious machine found in the parking lot of the Richmond airport.

It rained overnight.  Of course.

Tom called and they had found it.  Can we relax now?

Harlie woke up crying in pain, holding the right side of her head (not the side of the BAHA implant).  I'm guessing it's her TMJ on the right side that hurts.  It was then that I realized those were her first tears from pain.  She had not cried tears since the surgery - except when she was scared to go into the OR the second time.  Isn't she amazing?!

And she is already up walking (limping) with her cast.  I started this post on Sunday, but it is now Monday night and I'm finally finishing it.  She was able to come off the oxygen for a few hours today.  But when I spot checked her, her sats were in the 70s again.  So, she had to go back on.  She doesn't like it.  But, she has no choice.

Tomorrow Murphy starts third grade.  And Harlie would be starting kindergarten again.  But, clearly, I'm keeping her home for a few days.  At least until her incisions aren't so fresh and scary looking.  And  she's off oxygen.

I have pictures to go with this post - but I just can't upload them and attach them now.  So, no photos, sorry!

Thanks for reading this and for all your love and support.  It drove my energy.  And I never felt alone.  Not once.  Thank you for that.

Much love,
Christy xoxo

Saturday, September 1, 2012

Post-op Day 8 - Discharge Day?

Hopefully today will go as planned. The plan is that the oxygen company is supposed to deliver the portable oxygen concentrator between 2 and 3 this afternoon. That kinda stinks. I wish it were earlier. But we forgot that it's Labor Day weekend. So I guess beggars can't be choosers.

There is a flight at 8pm tonight. So, if this oxygen guy is late, we'll be cutting it close. We really need to be at the airport before 6pm. If we had to add in extra time for security before... And we still need to go by the hotel and pack up and check out. Tom is doing what he can now. Then when I go later, I'll pack up my stuff. So hopefully getting out of there will be a quick process.

And the nurses tell me they will get everything done paper work wise before this afternoon, so when the guy comes with the concentrator, we'll be ready to go.

I must admit that while I know she looks great (and so much better than after her previous jaw surgeries) I'm not looking forward to taking her out in public. People will not know what she's been through. They will probably think she was in a car accident. Or that we abused her. At any rate, I know that look. That look of pity. And while I get it, it doesn't make it any easier to deal with the stares.

They just came and took out both IVs, so I think it's sunk in that she gets to leave today. They said all the paperwork is ready for us. And we have now purchased the plane tickets. We had to pay a little extra to get the first rows, but I think it will be worth it when we don't have to carry her through the whole plane to the back.

Well, that's it for now. I'm headed to the hotel to pack. I'm so excited to be able to go home!!! I can't wait to see the boys and Rooney, of course.

Thank you so much for all your continued love and support! I can't tell you how much all the messages have helped our spirits. That, combined with Tom being able to stay the whole time, has made this hospitalization so much better than what I expected.

Much love,

Christy xoxo