Thursday, October 30, 2014

Murphy and swimming

We signed Murphy up for year round swimming this fall.  He had a brief stint with gymnastics once a few years ago.  And, of course, he's been on the summer swim team with our pool for the past few years.  But, I think other than that, this is our first real commitment to an extra curricular activity.  And I have to tell you, it's not easy.

When it comes to being the parent of a child with special needs, I got it.  It's been eight years now, and I feel like I have a good handle on it.  But, this carting around kids after school and getting to practice on time, like every time, weeks and months on end?  And volunteering (aka making commitments in which other people are relying on me)?  I'm not so sure about all that.  Walking into NOVA for practice, I feel like a fish out of water.

Plus, that's not my community.  Those aren't my people.  They don't know me, us, or Harlie or what we have on our plates.  I feel like I'm exposing myself.  And it's really scary.  But we are going to try this for a year, and see how it goes.  I know we'll meet more people and Murphy will make some friends.  It's just going to take a little time.  Luckily, I do know a few people so that's good.

So, every Tuesday and Thursday, I put Harlie in the car and drive to school to pick up the boys from the car pool line.  Murphy is in the 5th grade, and this is the first time I have ever used the car pool.  We are walkers.  Rain or shine. Every day.  Well, except Tuesday and Thursday afternoons now.  Dismissal for car riders is at 2:10 and practice starts at 2:30.  It takes about 15 minutes to get there.  So, by the time he actually gets in the car and changes into his swim suit, he's a few minutes late.  But, they said they are fine with that for the 2:30 class, since they know it's a tight fit.  I tried the 3:30 class the first week, and it is very crowded.  Considering this is his first year, I thought he would get more attention and time in the water with a smaller class.

He is the tallest kid in his class (granted, it's a small class).  But, after just a few days, Murphy came home and said that everyone was asking him why he's not with his age group.  He is in a novice intro group vs. an age group.  I feel so bad that it took us so long to be able to introduce him to something.  But, it really was the best we could do.  I know I could not have handled this kind of schedule last year or any year prior to that!  So, I explained that to him and told him that it's up to him as to how fast he can move up to his age group.  He has to earn it.  Hopefully it will be a good experience for him.  

Anyway, he had his first swim meet October 11th and 12th.  He had two events on Saturday (50 Free and 50 Breast) and one event on Sunday (50 Back).

On Saturday, I had to run twenty miles for my marathon training.  His session was in the afternoon, so Tom let me rest at home while he took him to warm ups.  Warm ups were at 1:30 and he was scheduled to swim a few hours later.  So, I just showed up in time for the events.  He did great, I think. He wasn't scared, and he didn't DQ, so I considered that a success.  And he already looks so much better in the water than he did this summer.

On Sunday, Harlie's nurse had to leave before Murphy's swim meet would've been over.  So, Tom stayed home and I took Murphy to the meet.  Warm ups were at 1:30 and he was scheduled to swim around 4:20.  I took two chairs for us and he brought a book.  We found a spot and I put my feet up in Murphy's chair to relax while we waited.  It's pretty warm/hot in the building and I was sitting down, relaxing.  And I fell asleep!  In public!  And I'm not even a napper!  Please remember that I ran twenty miles the day before!  I was SO tired.  And we had all those appointments that week for Harlie's tooth.  Plus, the We Haunt Harlie event.  It had been such a busy week.

Anyway, the next thing I know Murphy says, "Oh, 134? That's my event!"  Oh no.  Murphy was in the first heat!  There was no way he was going to make it if they were announcing the event already!  I told him to run (through a crowded building) but he did not make it.  There was no way.  Ugh.  I wanted to cry. I went over to that area, and he didn't return.  I saw his coach doing a lot of talking with a few people.  It looked like they were talking about him.  So, I was crossing my fingers that they could work him into another heat.  When she appeared to be alone for a sec, I went over to her and told her that I was Murphy's mom and that I was really sorry that he missed his event.  She was very kind and understanding and said it happens.  She said they were looking for a place to put him, but all the heats were full.  I stood by the pool and waited while the meet continued, praying that they would work this out for him. To think we sat there for three hours - for nothing?!  Ugh!  And I knew Tom was never going to let me live this down. I am so irresponsible when it comes to time. I just can't seem to get it together! I felt absolutely horrible. And to make things worse - I didn't take one single photo of him at his first meet.  After several events, she came over and told me he would be in the first lane, in the next event.  Oh, thank you so, so much!  What a relief!

So, the announcer said, "Event number so and so, 50 Breaststroke, and Lane 1 will be swimming 50 Backstroke."  :-)

I must say, I was way more upset and worried about it than Murphy.  He didn't seem to be at all bothered by it.  He didn't even care that he was swimming a completely different stroke than everyone else.  I'm not sure if that's a good thing or not.  One could speculate that he just doesn't care, period.  But, I'm hoping that he's just a "go with the flow" kind of kid.

He had another meet this past weekend.  This time he was swimming during the morning session.  I had to run my last twenty-mile run (before the marathon) on Saturday.  So, I missed it.  Apparently, it wasn't a good session.  He flip turned too early in one event and his goggles fell off in another.  Tom took him again on Sunday, since they had to leave so early. I guess he didn't want to repeat what happened the last time I was in charge. :-)  He swam his first 100 meter event, and it was 100 Breast.  There were only three boys in the heat, but Murphy came in first.  So, that's exciting!

And, thankfully, my twenty-mile run went really well.  Despite the fact that I was LATE getting to the start.  I know, that's shocking, isn't it?

I left early Saturday morning and thankfully was talking to my friend Niki on my way.  She's clearly a really good friend because it was before 7am at the time!  Anyway, she said something that made me realize I left my Garmin at home!  ACK!  Seriously, I cannot thank Niki enough for this!  Luckily, I was right at an exit when I realized it, so I was able to take the quickest route back home.  Grabbed my watch and hurried to try to make it.  Since I am doing Galloway (run/walk combo), I need my Garmin to beep to tell me when it's time to walk/run.  That day I was running for five minutes, walking for one.

Anyway, the group was starting in waves according to one's predicted marathon times. I was going to start at 7:20 or 7:23.  Either wave would have been fine.  I pulled into the parking lot at 7:27.  There was one group left.  I hurried to my team's meeting area to sign in (we sign in so they know everyone who started, finished).  And that last group left.

I was literally the LAST person to leave the parking lot. Sometimes, I don't know how I survive.

Anyway, I had to work hard to keep my running under control for the first few miles.  I didn't want to run faster because I felt rushed.  I wanted to keep to my plan.  Which, I did.  And I am really proud of myself.  I ended up catching up to my team!  I couldn't believe it.  And, as a bonus, I ran it seven minutes faster than my last twenty! I have had some great runs lately.  So, after that last twenty, I feel really confident.  And now we are officially in taper mode.  Yay!  So, my next long runs are twelve, eight and then the marathon - 26.2!

As difficult as the past few months have been, I can now say that I am truly excited about this marathon.  I know that sounds weird.  But, I'm almost there.  It's almost over.  And, I'm ready.  And it feels really good to know that I'm ready to run 26.2 miles.

I wrote all the above on Monday night.  Is now Thursday and I am finally getting around to finishing it.  Since Monday night, I have come down with some illness.  I am super tired, and coughing a lot.  My lungs hurt.  Awesome.  So, I am not running for a few days, hoping that some extra rest will kick this thing out.

We got Harlie's new wheelchair yesterday.  She just loves it.  But, I will save that post for tomorrow.  I'm going to finish up this one for now.

Thanks for reading!
~Christy xo

Monday, October 27, 2014

We Haunt Harlie & Friends Event

Friday, October 10th

Harlie's IEP was at 10am.  I was supposed to meet my friend, Emilie, for coffee that morning, but on my way out the door, I realized that Murphy left his lunch box.  So, I took that to his school and on my way to Starbucks, I called her to tell her I was running late (not that she didn't expect that anyway).  But, she answered and said she was still at home.  And she was very upset.  She has a daughter with special needs, too.  And Anna Cate was having a very rough morning. Anna Cate is nonverbal and Emilie suspects something might be hurting her - but she can't communicate what's wrong.  The effort to try and find out what is wrong is truly exhausting.  Keep in mind that our special kiddos have lots of other issues, too.  So, there are lots of possibilities! My heart ached for Emilie.  It's so overwhelming to know that you have to think of everything.  Anna Cate is counting on her to figure this out.  She's been keeping a log of everything that Anna Cate does to try and see if there is a pattern to her discomfort.  And in her house at that moment, I know how alone and isolated Emilie felt.

I'm thinking I just don't share these kind of down moments enough.  Even the good days are hard.  And the hard days feel downright impossible.

After I hung up with her, I went to Harlie's IEP meeting.  I'll summarize - because no one wants those kinds of details.

The minimum number of hours per week that are given at home is five, which is what she received last year.  After a lengthy discussion, the number being considered was seven.  I said that I just didn't think that was enough.  So, I asked for ten.  I said that I want to be able to send her to school whenever she gets the okay to go.  And right now, if that were to happen, we would be in a difficult spot because where would she go?  Technically, she needs to repeat first grade.  And she's definitely not ready to be put in a second grade class.  But, apparently, there's some rule that says you can't hold a child back twice?  I don't know, don't quote me on that.  Anyway, I said that we have a lot of ground to make up this year and I don't see how seven hours is going to cut it.  So, let's give her ten, and if she catches up too fast, we can reconsider then. ;-)

So, they countered with ten hours, one of which will be speech therapy.  I would be happier about it if it weren't for that.  I went in there wanting more speech therapy than just one hour per week.  Since she was supposed to receive an hour per week last year, and never got it, I was hoping to negotiate more this year to make up for it.  And to make it worse, her speech therapist can only come on Thursday mornings, and the two Thursdays after our meeting Harlie had a doctor's appointment and then dental surgery - so no speech therapy for three weeks!!!

That night was the We Haunt Harlie & Friends event at the Children's Museum of Richmond in Short Pump.  Lynda did a fantastic job organizing this event.  There was pizza, desserts, beer and wine.  I think all the kids had a fabulous time.  My kids were exhausted when it was over.  I don't think Harlie has ever walked/ran that much in one night ever!  Her sats were a little low, but there was no stopping her!  I did a lot of talking - I was trying to speak to as many people as I could - so I couldn't take many photos.  So, this is all I got and I'm totally bummed.  I wish I had at least gotten some photos of the volunteer stations (bar, pizza table, t-shirt sales, etc.).  After all, if it weren't for all the wonderful volunteers, none of this could happen.

Cooper (aka Optimus Prime) and Harlie.

Frostings donated the yummy mini-cupcakes. They were delicious!

Lynda and I.
I hope everyone who came had as much fun as my kids.  It really was a great event.  Thank you for coming out and supporting the We Heart Harlie & Friends Foundation.  It really is overwhelming to see so much support for us from our community.  We are beyond blessed to be recipients of this kind of love and support.

Much love,
Christy xo

Thursday, October 9, 2014

Several updates.

Dental Surgery Update:

Can you believe that the very next day after our appointment with the VCU dental clinic, the scheduler called me to tell me that they moved Harlie's surgery date up to .... OCTOBER 23rd!  Isn't that fantastic?!  I am so relieved!  She will have a pre-anesthesia appointment a week prior and then a pre-op check from her pediatrician the day before.  I am so, so happy to know that she doesn't have to wait so long to get some relief.

And I just want to say thank you to everyone who cared so much about this on Facebook.  I was just venting and couldn't believe the response I received!  I can't tell you how grateful I am that Harlie is so well loved and supported!  So, thank you!!!


Harlie had her annual well check with her pediatrician last week.  And she had an appointment with the feeding clinic, too.  Unfortunately, she's lost two to three pounds since April.  In April, we switched her diet from Pediasure 1.5 to Pediatric Compleat.  Both have the same volume per can, but Pediatric Compleat doesn't have as many calories (but it's a little easier to digest).  So, in order to give her the same amount of calories, we had to increase the number of feedings per day to five cans.
Well, her schedule was already a little nuts.  So, we tried to sneak the additional can into the middle of the day by breaking it up into two other feedings.  That just didn't work for her.  She would complain about her stomach hurting the whole day.

And when she covers her g-tube with her hand and says, "No! I'm not hungry." I just can't force any more into her.  I can be tough on her with a lot of things, but this is not one of them.  So, she suffered.  She lost weight, and as a result only grew one inch in a year.  You grow out before you grow up. (Although I cannot help but wonder how the heck Murphy is as tall as he is.  He is nothing but skin and bones!)

Now to catch up, she needs 5.6 cans a day.  Clearly, we have to make a change.  If I couldn't get five in, there's no way I can get 5.6 in!  After thinking long and hard, I made the decision to go back to continuous night feeds for a while.  I dusted off the ol' feeding pump and found a box of food bags in the attic.  I thought I wouldn't remember how to work the pump, but it all came back, no problem.

She now gets two cans during the night while she sleeps, and we bolus feed her the other 3.6 cans during the day.  It definitely feels like we are going backwards, but I don't see any other way.  I can't be accessing her g-tube every hour - that's just not sustainable for regular life.  And I don't want her to be uncomfortable during the day.  So, we'll see how it goes.  We have to go back for another weight check in two months.


I might have mentioned that I'm training for the Richmond Marathon in November.  As the miles are getting longer, working them into life is getting more difficult.  I have to document just how difficult it is so I don't forget it the next time I think about doing this again.  It's clear to me that our life isn't conducive to me running this many miles.

Last week, Harlie had three doctor's appointments.  At one time in her life, that would make for a slow week.  But, since we took some time off from all things medical, it was a shock to my system.  Throw in my part-time job (which is very part-time) and Murphy's after school sport (I might have forgotten to mention that we signed him up for year round swimming, more on that soon) and last week I was wiped.  Being at all those appointments messes up any kind of eating/drinking routine, too.  I had to skip a few meals, and glasses of water.

Normally, I run my long runs on Saturdays.  But, last weekend we went camping and we wanted to get on the road as soon as the kids got out of school on Friday.  So, I had to move my long run to Friday morning.  Luckily, it was a recovery week, so I only had to do 12 miles (I have to run 20 this Saturday).  Thursday night I told Tom that I didn't feel prepared for the run.  I had a really hard week, with not enough focus on eating and drinking.  But, it was too late to do anything about it.

Anyway, I had a hard time getting out of the house the next morning.  And after I finally did, all I could think about was all the stuff I had to do before the kids got home so we could be ready to go.  It's so much easier to set up camp in the daylight.

At about the five mile mark, I knew it was going to be a hard run.  I tried to talk myself up, but by seven miles, I reached for my phone and called Tom.  I asked him where he was (hoping he was out on a job close by) but he was in his office.  So, I said, "Okay, let me go.  I'm going to call my Mom and ask her to come and get me and drive me home."  I have never said that during a run before.  Never.  He encouraged me to continue and told me that we would still make it to the camp before dark - even if I walked home.  He said to run when I could, and walk when I had to.  I wanted to cry.  For real.

I forced myself to continue.  But I hated every minute of it.  As I ran/walked home, I kept on looking at every car that passed, hoping and praying that it would be someone I knew so I could ask them to drive me home.

Second. To. Worst. Run. Ever.  This was the worst.

After what felt like FOREVER, I finally arrived home.  And I have questioned my ability to run this marathon ever since.  One thing about running really sucks - all it takes is one bad run to completely destroy your confidence.

I ran ten miles on Wednesday and it went fine.  I need to put that lousy 12-miler behind me and move on.  And hope for MUCH better with the 20 on Saturday.  Ugh.  Why in the hell am I doing this?  Never again.  I will only do half marathons in the future.  I don't need this extra stress and anxiety.

Harlie's IEP (individualized educational plan):

I don't have enough energy to give this a proper update.  But, after a month of trying to get this IEP to happen, it is finally scheduled for Friday morning.  This is the first IEP I have ever dreaded.  I suppose that's not that bad, considering she's had more than I can count.  But, this is the first time I am asking for more than I think they want to give.  For home bound services, the minimum/standard is five hours per week.  But, that is for a typical kid, with no IEP, who can hear and talk and read and all that jazz.  Five hours per week is hardly appropriate for Harlie.  So, I want her to have more.  Since this is not something the school has ever really dealt with, there are a lot of questions for central office.  So, I asked the person with authority to make decisions on this to be in attendance.  I haven't met her.  So, I'm feeling a little nervous about having an "outsider" there, who has never met Harlie.  I'm hoping she's completely reasonable and excited about making a positive difference in Harlie's life.

No matter how many IEPs you have, it's never easy to sit around a table with a bunch of educators and talk about your kid and what needs to happen to help her learn.  I have a feeling that I'm really going to want a drink afterwards.  But, since I'm running those stupid 20 miles on Saturday, I can't have a drink.  Seriously, why am I doing this?!?!?!

I have to wrap this up now.  I have plenty more to tell you and I want to share some pictures from our camping trip.  But, I need to get to bed.  More soon!

Much love,
Christy xo

Wednesday, October 1, 2014

Dental issues are never fun.

A few weeks ago, when I was reading Harlie her bedtime story, she put her hand up to her mouth and signed "hurt."  I am not proud of this, but that particular evening, I was not up to the challenge of figuring out what was hurting her.  I just assumed it was her pins, or a tooth coming in or something.  I gave her a dose of Tylenol and called it a night.  About a week went by without another mention of it.

Then, again, while I was reading her bedtime story, she did it again.  This time her little hand shook a little while it hovered over her lower jaw.  I put down the book and told her to let me see.  I pulled her lip down, which is not an easy task (her skin is very tight around her jaw) and I found the source of her pain.  

She has a tooth that has come in on the bottom right.  It is her "S" tooth for those of you in the dental-know.  Her jaw has no room for all of her teeth.  So, this one popped out the front of her gum line.  It protrudes forward.  And it has rubbed a hole in her lip and it appears that the tooth sits IN the hole.  The hole is an open sore - like a really big ulcer.  Doesn't that sound so painful?  

I want it fixed. Like now.  

Of course, it's not that easy.  

First, I emailed her surgeon in Boston.  She said to find out if the tooth is a baby tooth or permanent tooth.  If it's a baby, we pull it.  If not, we discuss further.  

I then called her dentist and they got her in the very next morning.  Yes, it's a baby tooth ("S" tooth, baby teeth are letters, permanent teeth are numbers), thank God for small favors.  Now to find someone to pull it.  I should say "extract" it because pulling it sounds simple.  And, as you might have figured out, nothing is simple with Harlie.

Later on that night, Harlie sat in the kitchen floor and did this...

I never discussed her tooth issues with her.  Just with her doctors, around her.  Clearly she understands.  And knows this means the Tooth Fairy is coming.  Yes, sweet girl, the Tooth Fairy will not forget you.

Due to her heart and lung issues - she cannot be sedated at any outpatient clinic or setting.  She needs more monitoring, and that has to be done in an operating room, under general anesthesia.  

Numbing the area and pulling it - like some might be able to do - is not an option, either.  There is no way that Harlie would ever cooperate for that.  Please remember that this girl has been through more in her life than most can even imagine.  She is very fearful and the experience would only cause her more trauma.  PLUS, since her mouth is very A-typical, they have no idea what's involved with extracting this tooth.  

So, they will need to put her under, take x-rays, and then figure out what to do from there.  

The only facility here in Richmond that I'm comfortable with her going under anesthesia is VCU.  So, I made an appointment with the VCU dentistry, pediatric department.  They got us in for the very next day, which was today.  

At first, I was pretty annoyed.  I tried to read about the dentist that we were seeing and I couldn't find her anywhere on their website.  So, I called to ask and was told that she is a resident.  While I understand that a resident is a dentist, I knew this was too much for a resident.  And I just didn't want to go down there, have a resident look at her and her history and then tell me I had to bring her back to see someone else.  It was a frustrating conversation with some "IF she needs it pulled" and "IF she needs anesthesia" as if I had no idea what I was talking about.  Ultimately, I gave up and thought we would have to go just to get in the door and take it from there.  I vented to her cardiologist, who told me that once they met her they would understand, so I should relax.  He was right.  

When I checked in for our appointment, she told me that they re-assigned her from the resident to a faculty member.  I promise I don't want to be insulting to a resident, but I really feel like Harlie's earned some sort of gold star, premium membership, fast-pass, kinda thing.  She really shouldn't have to mess around anymore.  She's seen more than her fair share of residents in her lifetime.  

The practice was very nice and compassionate.  I handed over Harlie's five page medical summary and they listened.  Based on her previous jaw work and crazy mouth, they felt that an oral surgeon would be best to do this, along with an oral maxillofacial surgeon's involvement.  

They warned me that there was a wait for surgery dates.  So, I asked what do we do if Harlie's pain becomes worse or unbearable and he said, "Let us know and we'll prescribe something."  Hmm.  

But, since I didn't know a date yet, there was no point in arguing.  They sent me to the scheduler next.  
She sat me down and gave me a date - January 22, 2015.  WHAT?!

She saw my face and she started explaining.  She was awesome.  For real.  So compassionate and understanding.  She said that they only get two days per month in the OR - the first and last Thursdays of each month.  Considering her pain, she put Harlie on the hot list, which is a list of kids that need to be worked in ASAP.  As they get cancellations, she works them in.  I asked her how likely that was and she said highly, thanks to that enterovirus going around.  

Clearly, I am upset.  The thought of waiting almost four months to relieve Harlie of pain KILLS me.  Not to mention that her having an open sore in her mouth makes me very nervous about the infection risk.  We've been there, done that, more times than I care to remember.  And it's always been horrible.  Her infections have never followed the norms, either.  Because I never would have anticipated a four month wait, I didn't go over her infection history with them.  I wonder if that would have made a difference at all?

I totally get that their docket is full.  And I totally get that there are other children with pain related issues that are also waiting on their OR times.  I don't want to bump another child so Harlie can be seen sooner.  I don't.  

What I want, is to have a facility here where children don't have to compete with adults and fight for OR times.  I want a facility that can operate on her when it's appropriate for her, and not just put her in line.  As many times as Harlie has had to go into an operating room (40 surgeries, people!) we have NEVER had to wait almost four months for a surgery date.  Never.  

I put something about this on Facebook today and was astounded at the response I received.  So many caring friends offering to call people they know to see what they can do to help Harlie.  I wish I was the kind of person who was comfortable with this sort of action.  But, we need our local docs for the long haul, and the last thing I want to do is piss them off, or burn a bridge.  I don't want to have to have someone pull some strings.  I just want a facility that runs with the best interest of children in mind.  And having a child with heart defects wait four months for a surgery that involves an open sore in her mouth sounds like it's not in her best interest.  

But, then I remember all the infections.  And I know her history.  And the thought of this going the wrong way terrifies me.  After all she's survived, what if it was a stupid tooth that took her down?  And I was too nice to let people help.  I would never forgive myself.  

While I am mulling that over, I have already gotten a call in to Children's National in DC and I've emailed her surgeon in Boston.  I really don't want to have to go to Boston for this.  But, I am curious as to what kind of wait they have, just for comparison purposes. 

As much as I would like to stay local as much as I can, this is exactly why I leave Richmond.  It has nothing to do with her doctors.  I am very happy with them.  And VCU has a great PICU, with great nurses and doctors.  But, navigating this system, and knowing that kids come second to adults makes me take her elsewhere.  And so many people here think we already have a children's hospital.  Crazy.  
Well, it is late and tomorrow is another busy day.  Harlie has an appointment with the feeding clinic in the afternoon.  I'll let you know how that goes.  

Thank you so much for caring about our sweet girl!
~Christy xo