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!!!

Nutrition:

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.

Running:

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

Nike Women's Half Marathon DC 2013

What a great time!  Such an enjoyable weekend!  It was my first girl's weekend in longer than I can remember.  And it was my first destination race.  And it was wonderful!!!

My friends Sally and Stephanie came to pick me up at 11:00am.  It took me a few minutes to be able to leave.  It felt weird to be leaving - just me and no one else.  I honestly can't remember the last time that happened.

Anyway, we drove straight to Georgetown and luckily found a place to park not too far from packet pick up.  Then we went to Starbucks to use the restroom and stood in line for like 20 minutes.  That wasn't so fun.  Then we went to stand in line to pick up our packets.  OMG.  This was the line.  And that arrow is pointing to the tent where you got your packets.

It was a very intimidating line.  We thought we would be there forever!  But, it actually moved pretty fast.  The crazy line gave us a first impression of disorganization and chaos.  But, honestly, once inside, I realized it was actually quite organized.  And, pretty impressive considering they had to set up a tent on a small amount of space, to hand out 15,000 race packets in an already crowded Georgetown!

Then we went to find food.  We found a cute little Italian place and ordered brunch, at 3pm.  I have to say that the scrambled eggs were delicious!  I know that sounds strange, but they had white or black truffle oil, I can't remember which.  And they were the best I've ever had.  And that's saying a lot since they didn't even have cheese on them!  And of course, the drinks were delicious, too.

YUM!

Then we went shopping in Georgetown.  So fun!  The Athleta store was great.  And I got a new shirt and skirt to wear for the race.  Exciting stuff!

After going several places, we headed back to the car so we could check in at the hotel and get ready for dinner.  It was so fun to see so many people walking around carrying race packets.

Dinner was great.  I stayed up longer than I wanted blogging.  But, after I wrote almost all of my post, something happened and my fingers hit the exact combination of keys that deleted the whole thing.  Ugh!  I hate it when that happens!  Must remember to hit "save" more often.

Anyway, 5am came pretty quickly.  But, it wasn't that hard to wake up, really.  I was pretty excited for the race.  I took pictures of the three of us and texted them to Tom so he would know what we were wearing so he could look for us during the race.

Sally and me

Me and Stephanie

We met everyone in the lobby at 5:45am and walked to the start, just a few blocks away.  During dinner the night before Niki said that she packed "that awful Frostbite shirt" to wear in the morning.  Since it's colder in the morning, a lot of people wear something crappy that you don't care about to keep warm, and then when you don't need it anymore, you just toss it.  I said, "I packed my Frostbite shirt, too!"

Me and Niki - Great minds think alike!

Katherine, Wendy, me, Niki, Mary Curtis and Anna

Then we checked in our bags - so I couldn't take anymore pictures.  Next time, I'm going to figure out a way to keep it with me.  Just before we went to go get in the starting line - I looked up and saw Tom's face!  I don't know how in the world he found us!  My friends said that he installed some sort of tracking device on me when I wasn't looking.  He was on his mountain bike so he could ride from spot to spot to find me.  And since he was there well before 7am (the start time) he obviously woke up very early to drive up.  I think he said he left before 4am.  On his birthday!  He is something!  Love him!

Here is a picture of the start that I found on line.  Pennsylvania Avenue, pretty awesome, huh?

 I think the race was very well organized.  Clearly most of the 15,000 runners were women (with a few men) so they had some nice touches - like a red carpet at the start.  You can't see it in the photo, but it was pretty cool.  The only thing that we didn't like was that there were no wave starts.  I do think it would have been way better if they had wave starts with having to qualify for the faster waves.  It would have made the first few miles a lot less congested.  It was so crowded and you had to do a lot of weaving all across the road to find pockets of space.  

The start and finish were the same place.  So, here's a shot of it as people were finishing.  

Here's a picture of me near the end of the race (11 mile mark).  We came up 9th Street and took a right on Pennsylvania Avenue.  The finish was at 11th and Pennsylvania.  So, when you turned, you knew the start was right there, but you had to run away from it.  Ugh!  

I felt really good for the first six miles.  And I was running with Mary Curtis and Katherine.  But, after six miles, I started to get tired, and I knew I wouldn't be able to maintain that pace to the finish.  I was running faster than I thought I could considering the lack of training time.

My personal record for a half marathon is a 1:58, ran in 2009.  Back when we registered for this run, my goal was to beat that.  But, after the winter I had, I had to re-group and change my goal.  I decided to just have fun and not worry about it.  And I did!  But, I still ended up with a better time than I thought I would have.

Here were my splits...
Mile 1:    9:56 (it was so crowded!)
Mile 2:    9:38
Mile 3:    9:33
Mile 4:    8:57
Mile 5:    9:09
Mile 6:    8:54
Mile 7:    9:18
Mile 8:    9:15
Mile 9:    9:19
Mile 10:  9:00
Mile 11: 10:39 (my hardest and slowest mile)
Mile 12:  8:23 (my fastest mile!)
Mile 13:  9:29

My finish time was 2:04, with an overall average pace of 9:20.  I know that's slow for some people, but I am SO happy with that!  I haven't done any speed work in months.  And my training was inconsistent at best.  Just imagine what I could do if I could be consistent!  One day...

Tom said it was the easiest race to spectate.  He rode his bike and by mile 4, I had seen him 3 times!

After the race, I found Mary Curtis and Katherine (they finished just a few minutes ahead of me).  We got our finisher shirts and our Tiffany necklaces.  Men in tuxedos carry trays of the Tiffany boxes and hand them to you as you go through.  Since I didn't have my phone, I couldn't get any photos.  So I found this one online...

Then I went to our designated meeting place and found Tom, Sally and Stephanie.

Then I found Niki and Wendy.

Then we walked back to the hotel to shower and change for brunch.  Here's the necklace...

Of course I love it.  And will wear it proudly.

Then we headed on over to Marvin for brunch.  We didn't realize how far a walk it was.  And I wanted to quit.  It was well over a mile.  And it took us a solid 30 minutes to walk there.  My legs were tired and sore.  But, it was worth it.  It was a great time.

Sally, Katherine, Stephanie, Mary Curtis, Me, Niki, Wendy and Anna

It really was a fabulous time.  I loved every second of it.  Tom drove home and found this in our yard.

This is the same thing that my friends Heather and Niki did for my 40th.  Heather gave me the idea to do it for Tom.  And I thought the pigs were a perfect match since he likes to barbecue so much. he loved it!  Thanks, Heather!

So, that was the weekend.  Such fun!  Tom did a great job selecting a great hotel, and great restaurants.  I hope we get to do it again next year!

Much love,
Christy xo

Love Rox Half Marathon

Will go down in history as the worst run of my entire life.

For real.

The race started at 10am.  Awesome start time.  Plenty of time to get up, get ready and get down there, with no stress.  I ate oatmeal for breakfast, and went and met some friends so we could carpool together.

Once down there, found some more friends, and we were all happy and not really that worried about the race conditions, really.  See?  Here were are, just five minutes from the start...

Back row from left: Chris, Scott, Katherine and Niki
Front row from left: Ginny, Michelle and Me

Where to start???

Okay, first of all, I'm not a good runner, well, that's probably true as an overall statement, really, but what I'm trying to say is that I don't spend any time researching the race.  I don't look at the course, I don't look at how many water stops there are, if there are hills, whatever.  In fact, I usually don't even care where the start is - as long as someone else is driving, I don't really care.  Quite frankly, I just don't have the time.  I show up and run and follow everyone else and that's worked for me so far.  Plus, I just see no point in worrying about course details when I can just deal with it when I come up on it and move on.

The mistakes I made - inadvertently:  

I forgot to grab my hand held water bottle.  I thought about carrying it.  But, in the past with half marathons, there's usually plenty of water stops.  And I usually end up drinking at them anyway.  So, I guess I kinda thought, nah, I don't need it.  But, I really did mean to grab it, just in case.  But forgot.  Probably wouldn't have mattered anyway, because I probably would have left it in the car.  Regardless, I wish I had it, because this was a small race, and there were not enough water stops for me.

I also made a last minute decision to not wear a hat or ear covers.  Usually I take it off anyway, and I guess I just didn't want to have to carry it.  This was a bad decision as well.  According to my weather app on my phone, the temp was 38 degrees, which isn't that cold, really.  I've run in way colder weather.  So, that didn't bother me much.

I've bought cheap running clothes.  What can I say?  We're on a budget.  We're a one income family, trying to get by.  I usually buy my stuff at Target.  My gloves were $1.50 and I bought them last year.  Mental note, buy better gloves.  Like waterproof ones.  Also, because I have cheap clothes, they usually lack the little extras you need - like pockets for energy goos.  Luckily Niki and Katherine told me to put my goos in my gloves.  Awesome tip, guys!  So, at least I had 200 calories with me.

At one point within the first six miles, I misread my body's signals.  At the time, I thought I was hot, so I took off my long sleeved shirt.  Keep in mind that this is not unusual at all.  In fact, it's quite normal.  However, it was very wet (snowy mix of rain at times, sleet at times and snow at times, throughout the whole run).  So, I should have known, that was a little weird.  In hindsight, I was probably already dehydrated by then and was feeling a little sick to my stomach.  And you know when you feel a little queasy, you get hot?  Well, looking back, I think that's what happened.  So, I thought taking off my shirt would make me feel better.  It did at first.  But, then after that, I regretted it.  But, by the time I realized it, it was too late to put it back on.  I was soaking wet, and so was the shirt that was tied around my waist.

I also underestimated how many calories I would burn trying to stay warm.  I think taking off my shirt turned out to be pretty stupid.  In hindsight, I burned way too many calories, which resulted in more dehydration.

I didn't have a clear plan of what I wanted to do.  Do I race it, or just run it?  If I were to race it, I was going to run with Scott and Michelle so they could pace me.  I know I can run with them, because I've done it in the past.  Although not for 13.1 miles.  If I were to run it, I would stay with Niki and Katherine.  I was torn, and couldn't decide what I wanted to do.  I felt really good the first couple of miles and at a u-turn part of the course saw Scott and Michelle.  It was then that I decided to race a little, so I sped up trying to catch up to them.  Scott ended up waiting for me.  But we never caught Michelle.  Me racing to catch up was a bad call.  I usually start out slow and pick my pace up through the run.  Racing at the beginning was a big mistake.  Quite frankly, racing at all, was a big mistake.  In hindsight, I should have just run it with Niki and Katherine. But, that's hindsight for you.

Another thing that probably didn't help, was that we went to a concert on Thursday night.  In Northern Virginia.  And we got stuck in horrible, stopped dead traffic on 95 on the way home.  We didn't get home until 2:30am and as a result I got very little, and not good quality sleep.  More on that night in an upcoming post.  The concert was awesome and even factoring in yesterday, was still worth it.

The ailments I suffered:

A cramp.  I have never had a cramp before.  Can you believe it?  Maybe a little teeny tiny one, but not a big deal, really.  Yesterday I had a cramp right at the bottom of my sternum and it was bad.  Really, really bad.  Sharp, stabbing pain that made me want to hold my breath.  Not cool.  It was right at the halfway point.  The course was two loops, and it was right when we were passing through close to the finish that it was bad.  I saw Tom then, too.  And I SO wanted to quit.  I have never wanted to quit a race more than right at that moment.  I kept thinking I could just stop right then and be done.  Tom has my dry clothes and I could feel better in just a matter of minutes.  I don't know why I didn't.  I guess because even though I wanted to quit, I really didn't want to quit.  I knew that I would regret it.  Even though some runs hurt like hell, I always look back on them and think, I'm glad I did it.  So, I kept going.  Took a while to walk through it (the cramp).  But, it finally went away.  Thank God.

The course was really hilly.  And it had stairs.  Some of the hills were VERY steep.  And going down them can be just as painful as going up them.  I think it was the going down them that killed my IT band.  It has been a long time since I have felt any IT band pain.  Thank God.  It's really awful and nearly impossible to run through.  Once it starts, it gets worse fairly quickly.  It was on the outside of my right knee and it hurt.  I think at this point, I had only three miles to go.  Poor Scott had to run with me - I really feel bad about that.  He could have gone on and been out of that mess way earlier if he had just run on ahead and left me behind. I told him to go several times.  But, he said no.  He stuck with me.  And he got me through it.  After I told him about my IT band, he told me to sit down and he adjusted my knee (he's also my chiropractor, which turns out to be a really handy running partner ;-)).  That definitely helped and bought me some more time on my legs.

The weather.  Okay, maybe that's not technically an ailment.  But, at one point, and I'm not exaggerating, we were - running up hill, against the wind, when it all of a sudden went from a light rain/sleet fall, to a downpour of slanted sleet that hurt when it landed on your skin.  It was landing in my eyes and staying on my eyelashes, blurring my vision and making looking ahead impossible.  I stopped suddenly, and said, "FUCK!"  Sorry, for my language.  But, it's true.  There was not a more appropriate word for the situation, in my opinion.  And frankly, it needed to be said.  It was MISERABLE.

Another silly thing about the day, to add insult to injury was that for some weird, odd reason, I put on mascara that morning.  How stupid was that?  I don't even know why I did it.  I never do that.  I guess I had some extra time and it was later in the morning than a usual race, so I just did it.  So, here I was, running in God awful weather, hurting all over, with freaking mascara running down my face.  Awesome.  Talk about feeling good about yourself!

Lastly, as I previously mentioned, I was dehydrated.  I don't think I've ever been before.  At least to this point.  I have always associated dehydration with hot weather.  But, I guess it doesn't matter.  When you're body is trying to stay warm and you're running, you're burning a lot of calories and when you're not drinking enough, it can happen in cold weather, too.  And since it was a small race, there weren't a lot of water stops.  Not that it mattered that much anyway.  It was probably too late.

About a mile or so from the finish when my vision was really bugging me, I thought to myself, what are the signs of hypothermia, again?  So, I just googled it and one says, "poor decision making, such as trying to remove warm clothes."  That one, I knew.  Luckily, it mentions nothing about blurred vision. It mentions slurred speech, but pretty much every part of my body was numb, so it was kinda hard to tell.

Needless to say, I have never been more happy to finish a freaking race before.  And that includes the marathon I ran.  While I was definitely in a lot of pain when I finished my marathon, the conditions were not nearly as deplorable as yesterday.  I wanted out of the cold, wet, snowy freaking mix and into a hot shower and bed.  STAT.

In fact, conditions were so horrible, that no one stopped to get photos.  We all just left.  We had already planned to meet for lunch afterwards.  So, everyone that was going headed straight there.  At one point during the run I realized that I had forgot to pack an extra pair of shoes and socks.  My feet were soaking wet.  There was no way I could sit through lunch with cold, wet feet.  So, Tom stopped at a Rite Aid and bought me some big, fluffy socks.  My shoes are really light and thin, so once I took off the drenched socks, and put the new ones on, I put my wet shoes back on, and it was "fine" till I could get home.  Keep in mind that my hair was soaking wet, too.

I couldn't find a picture of me finishing (maybe they thought I wouldn't want it documented).  But, I found this one of a girl I don't know.  But, it shows how awful it was...

On the way to the restaurant, I knew I was sick.  I had not felt that bad in long time.  It felt like a bad hangover.  And what a crappy way to feel when you didn't earn it by having a fabulous time the night before!  Ugh.  So, I tried to talk my way through it.  Thinking I just needed to sit down in warmth and eat.

I forgot to mention that as soon as I stopped running, I noticed the right side of neck was killing me.  Like I had slept on it wrong or something.  Seriously?  I guess I should just be thankful that my back seemed to do just fine and never gave me any trouble.

So, we get into the restaurant and sit down with everyone else.  I think it's safe to say that I looked like total crap.  Apparently I was really pale.  Scott asked me what was hurting and I told him my neck was killing me.  He saw an empty table at the end of the restaurant, so he took me there and gave me a quick adjustment.  You should have seen the people sitting at the booth right next to the table!!  It was so funny.

Anyway, I tried to eat some bread.  But, I could barely chew it and get it down.  I sipped on some water.  And I thought I was going to yak.  So, I went to the bathroom and changed into some dry clothes.  Then I went back to the table.  But, the thought of food really made me want to vomit.  So, Tom asked me if I could drive home.  While I didn't necessarily want to (we had his truck and I don't really like to drive it) the thought of sitting there anymore was unbearable. So, I left and Tom got a ride home with them.

You know I feel bad when I leave a social gathering.  That I asked Tom to plan.  But I was in bad shape.

So, I drove home, forced down a banana, drank some water and took the hottest shower I could handle.  Then I dried my hair, got into bed and assumed the fetal position.

Now, I realize that after reading this, one would wonder why in the hell I run.  Well, luckily, not all runs are miserable.  In fact, most are quite enjoyable.  And I don't mean the actual running itself.  I am no natural runner or athlete, so I think the running part is always a challenge on some level.  But, doing it with friends, chatting, being outside, doing something physical, is almost always enjoyable.  And no matter how bad or good the run was, afterwards, I always end up thinking, I'm glad I did it.  I always come away thinking it was a great achievement.  And I always feel stronger - mentally, and or physically - afterwards.

Ultimately, I think that is the reason I run.  Because getting through something difficult (like yesterday's run) is not really as much of a physical challenge as it is a mental one.  And somehow I think if I can survive the mental challenges of yesterday, I can survive the mental challenges of my life.  When I feel stronger physically, I feel stronger mentally.  And I want to be strong.  I need to be strong.  And so I run.  And, thankfully, most of the time I actually like it.  ;-)

Thanks to all my running friends who totally get it and help me through all my runs by making great conversation and memories!  You're all awesome!

Much love,
Christy xo

Oxygen Update

Since it's been a while since my last post, I want to give you a quick update.

Harlie is STILL on oxygen.  I am trying so hard to be patient - after all, I have virtually no control over the situation.  But, it is not easy.  It has been over two weeks now!  She has only been to school for two and a half days since December 21st.  And in all that time, from then to now, she has only left the house a few times - those two and a half days for school and a few doctor's appointments (and the ER). I am getting cabin fever for her!

And I want my house back, I want my routine back.  I want her to go to school and learn and try to make friends.  We check her sats regularly to see where she is.  We give her short breaks (sometimes long breaks) from the oxygen, each time hoping that she'll keep her numbers up.

Sunday she seemed to do well.  And I really thought she turned the corner.  But, her numbers were low again today.  I can't tell if the breaks are setting us back, or what.  But after a while she wants the oxygen off and she wants to be free from the tubing.  Plus, she simply will NOT wear an HME (which humidifies the air she breathes) when she's wearing the oxygen.  I guess the trach mask rubs up against and it must hurt.  So, the oxygen dries her out and causes mucus plugs.  Sometimes, keeping her airway clear is a full-time job!  We've gone through tons of saline bullets and suction catheters.

And frankly, worrying about it and thinking about all the school she's missing has really worn me out.

You might remember my story about how difficult it was to get more oxygen tanks delivered...  well, last week, during one of Harlie's breaks from the oxygen, Rooney got to her tubing and chewed up a connector piece that connects the tubing from the oxygen concentrator to her trach mask.  It was the only one I had.  We managed to save it temporarily with medical tape.  And I made the mental note to ask for more when I put my supply order in the next week.

Well, on Wednesday night Rooney got to it again (ugh!) and destroyed it.  The next day we tried other things to hook her to the oxygen during the day.  But, nothing else worked.

It was pouring rain - a real disgusting day (Thursday).  And I had to go out and get some boots and gloves for the kids because we were supposed to get some snow on Friday.  Well, more than three snowflakes, and they cancel school.  So, we were planning on them being home.  And since it snows so rarely here, I knew the boys would want to be out in it.  So, while I was out looking for winter wear (like every other mom in town who doesn't plan ahead) I called my DME (supply company) to try to explain what part I needed and see if they would bring it to me.  Trying to describe it proved difficult.  Well, I didn't think it was difficult to describe it, but it was difficult for them to understand what I wanted.  Whatever.

I was thinking that since it was the thing I needed to supply oxygen to Harlie, that they would deliver it to me - the same as they would oxygen.  Well, I thought wrong.  And not only that, but she said that she could put it in UPS and I'd have it the next day.  Huh?  How is that acceptable?  What would I do until then?  Seriously????  Again, it's oxygen, people.  So frustrating.  In fact, I was so frustrated that I kind of went off on this lady - not in a mad, yelling kind of way, but more like a complaining, no one is trying to help me kind of way.  She said I could come pick up the part.  Great.  I suppose that's better than nothing, but it's downtown (and will take me over an hour to get there and back), it's pouring outside, and I haven't found boots yet and I have to pick up the boys by noon.  Awesome.

So, I hung up the phone and a lady standing nearby said, "I'm sorry, I couldn't help overhearing your conversation."  And then she asked me some questions like, is it for your daughter, how old is she, is she in the hospital or home, etc.  Then she told me that her husband is a quadriplegic and she has been caring for him at their home for the last six years.  And that she just put him in a home (VA hospital or something in another town over an hour away) yesterday.  She said that she knows how hard it is to be a caregiver and how much it takes out of you and she just wanted to give me a hug.

Can you believe that?  She started crying and well, I simply cannot see someone cry without crying myself, so then I started crying.  I wasn't sad for myself, I was just sad that it has to be so hard to care for someone you love.  And how sad she must be to not have him at home anymore because she knew she couldn't do it anymore (she was probably in her 70s).  She was probably out shopping simply because she could.  Or maybe she didn't want to be home all alone.

And then I started to think of all my special moms.  Especially you, Ann.  And I wish that we could all live closer.  Because no one understands how exhausting it can be unless you've done it yourself.  And this lady knew.  She totally got it.  And I felt so sad for her.

So, we said good-bye and I left the store with two pairs of boots - one for Murphy and one for Cooper. I felt terrible buying just boots for the boys.  But, I wasn't sure Harlie could even go out in the snow - or that she'd want to.  And the boots were more than I wanted to spend in the first place.  I called Tom and told him how much they cost and he told me to try Wal-mart.  While we are not fans, they often have inexpensive snow boots - and with as little snow as Richmond gets, they will do.

At this point, I am calling Terri often, asking how Harlie's numbers are without being on oxygen.  Low 80s, which isn't great.  But, not an emergency, either.  And now, there is no way I can get downtown, and back before noon to pick up the boys (me and a friend take turns picking up our boys since they are in the same class and we live on the same street).  So, I go to Wal-mart first, find boots, buy them, with the plan of returning the more expensive ones, and then go to the preschool.  Pick up the boys, deliver J home, and then grab a snack for me and Cooper and head right back out again to go get that part.

I get there, and the parts they have for me are not correct.  Luckily a respiratory therapist that has come to my house a million times to do monthly checks on the equipment was there and she and I get along great.  I was able to explain to her what I needed.  Just in case you're interested here is what the set up looks like...

The green straps go around her neck so the mask part (trach collar) hangs in front of the trach.  The trach collar connects to the corrugated tubing.  Then you need a part that connects the bigger tubing of the corrugated part to the smaller tubing of the oxygen line.  The oxygen line is the small tubing on the right.  And it runs through the house and upstairs to the oxygen concentrator.

Here's a close up of the part I'm talking about...

You see the tubing with the ridges, then a small clear plastic piece, then a white plastic piece, then the oxygen line.  The white plastic piece is what Rooney destroyed.  I think the RT called it a "clown hat." Anyway, I suppose it doesn't really matter.  We finally got it worked out and I took my parts home and promptly put Harlie back on oxygen.  Then I took a really deep breath.  This oxygen dependancy thing is really quite worrisome and is really taking some major energy out of me.

Thursday night it started snowing, and just like predicted it stuck to the roads.  It had been raining for like three days straight, so everything was so wet.  Including the snow.  I took Rooney for his first walk out in the snow.  He was not excited about it until he realized he could eat it.  Then he was all about it.

And yes, of course they canceled school.  And no way my nurse wanted to drive in that stuff, so she didn't work that day, either.  That left me with the kids.  Ugh.  I knew that the boys would want to go sledding at the school (there is a great hill over there).  But, there was no way I could take Harlie.  Even if I was okay with taking her - I knew there was no way she could walk back up the hill after sledding down.  And the oxygen, etc. - no way.  Luckily, Murphy totally understood and didn't make me feel guilty about it at all.  He didn't mention it again, and didn't even complain that he couldn't go.  He can be so great sometimes.

But, I did struggle a bit with Harlie.  For one, when I tried the boots on the boys Thursday night, she pointed to herself asking where hers were.  Ugh.  Luckily, we had a pair of boots from a few years ago that are two sizes too big for Cooper.  So, I grabbed them, and gave them to Cooper, and then gave the boots I bought for Cooper to Harlie (they wear the same size - isn't that crazy?).  She was cool with that.  All boots I buy are universal in color for that very reason.

So, on Friday, she wanted to go out in the snow.  I tried to distract her.  But when she went to the communication device and said, "I want sled" I knew there was no getting out of it.  I know she's recovering from pneumonia.  And yes, she's still on oxygen.  But, it snows like once a year here.  How could I tell her no?  She has to have some fun, too!  And she's been stuck in this house for weeks and weeks!  Plus, she put her coat and boots on all by herself.

So, I let her.  We stayed in the front yard.  It has a bit of a slope to it, so the boys were sledding down our yard (I love how they did what they could without complaining!).  So, I put her on the sled and pushed her down a few times.  After about three walks up the yard she was done.  I knew that little bit of "exercise" was wiping her out.  We went back inside and hooked her back up to the oxygen.  And that was it of her time in the snow.  No pictures.  I tried, but one camera's battery was dead and the other's memory card was full.  And my cell must not have been handy.

But, luckily it was handy later...   Harlie had just watched Wild Kratts (an animal show).  When it ended she said something that sounded like Wild Kratts.  Well, it had either two syllables or two words.  I wanted to show her the word "another" on her communication device.  So I asked her if she wanted to watch another Wild Kratts.  She said no, and then repeated what she wanted to watch.  Which I would have sworn was Wild Kratts.  Well, I was afraid that she didn't know what "another" meant.  So, I asked her if she wanted more Wild Kratts.  She said no, and continued to repeat it - with complete patience.  I am a brick, so this horrible "conversation" went on for longer than necessary.

I asked her to give me a clue with the device, does it have an animal in it?  What kind?  But she shooed the device away (which is unusual).  She must have repeated herself 20+ times.  I wanted to video her saying it so I could post it on Facebook and ask if anyone else could understand her.  Cooper was in the room, and I asked him (because sometimes he knows what she's saying) but he didn't know either.  It was really ridiculous.  I finally gave up and told her that I just didn't understand what she was saying.  And I said I was sorry a bunch of times because I felt like crap.  I really, really hate these moments and they just make me so angry that she can't talk.  UGH!

She got up and left the couch and I thought she gave up from trying to watch whatever it was that she wanted to watch.  I got up, too, and went to straighten up the kitchen.  Harlie came into the kitchen with the bin full of markers and a piece of paper.  I thought, "oh, good, no TV, she's going to color, awesome!"  But then she said, "Mama" and pointed to her paper.  And this is what it was...

SpongeBob Square Pants

SpongeBob!!!  That's what she was saying!!!  I cannot even begin to explain my reaction.  I was a mess of emotions.  The fact that she sat there, so patient with me, and thought of drawing a picture - all by herself - of what she wanted to communicate to me was just amazing.  And it totally proves how freaking smart and resourceful that little girl is!!!  Well, at least it does in my mind.  Not to mention how fantastic her drawing is!!!  And that she drew it in a yellow marker, just to make sure I would get it.  I was laughing, I was crying, I called Tom, I called my mother, I posted it on Facebook.  Whew!  She was pretty proud of all the attention this drawing of hers was getting.  And I put SpongeBob on TV, of course!

By Sunday she seemed to be getting better and was staying off the oxygen for longer breaks.  We really thought she was turning the corner.  I ran the Frostbite 15k that morning.  It was 45 degrees, and pretty perfect running weather.  Afterwards, we went to brunch at Eat in Oregon Hill.  It was so yummy!

Niki and me.

Left to right, Les, Ginny, Niki, me, Michelle, Scott,
Brad, Tom, Andrew (you really can't see any of them) and Rick.

We had a great time.  Lots of laughs all around.

By Sunday night, Harlie's numbers were looking better without oxygen.  Woohoo!  The kids didn't have school on Monday, so I thought by Tuesday, she'd be good to go.  Her pediatrician told me earlier in the week to keep her home from school as long as she's on oxygen.  He said she's still recovering and if she caught something else, the combo could land her in the hospital and she'd miss even more school.  Well, okay, fine.

We put her on oxygen during the night, and then let her have a break after she was awake.  She did okay for a while, but then slowly her numbers went down again.  By noonish or so, she was back on the oxygen again.  Grrrr!

Plus, the dreaded reaction to the antibiotic combo she was on has hit full force.  It has really done a number on her GI system.  So, between that and the oxygen, she's in no way ready for school tomorrow.  Total bummer.

Well, as usual I have much more to share with you, but I am falling asleep as I type now.  So, I have to go.  So much for my "quick" update!

Thanks!
~Christy

Happy New Year!

If you were worried about me after my last post - don't be.  I'm fine.  Actually, I'm much better.  Things are still crazy around here with the kids home from school.  They are off all this week and will go back on Monday.  While I don't consider myself a structured kind of person, I do like a little routine.  So, I am looking forward to getting back into the groove next week.

We are still having some problems with my laptop.  So, my photos are all over the place.  I'm using my old laptop now and have finally uploaded some pics.  Here they are (totally random):

The night we decorated the Christmas tree.

I don't know what happened to this photo,
but I thought it turned out kinda neat.

I tried to take a decent picture of the three kids together.
I have yet to achieve that goal.

My friend Bethany at a neighbor's party before Christmas.
Bill and Veronica really know how to party.

We karaoked into the wee hours of the morning.
This is proof that Veronica was in on it.

Tom and I.
We did not mean to match.

We had the Daisy Troop Christmas party at my house.
It was crazy, but it was fun.

Our little Daisies.

Christmas morning, before going downstairs.

Murphy loved his bike.  And his bike lock.
When he opened the lock, he said, "In your face!
Take THAT criminals!!"

Cooper got soccer shoes...

and a soccer ball from his cousins.  My sister is also
registering him for soccer this spring.  He is going to love it.

Cousins.  From left to right:  Kelly, Tanner, Murphy,
Charlie, Cooper, Harlie, Maggie, Cutter and Jordan

Maggie and Harlie.

Me and Harlie.  Probably one of the best photos
of the two of us together.  

Cooper couldn't wait to get outside to try out his new
shoes and soccer ball.  He loved it!

On Friday night our neighbors had a wine tasting party.  John and Jackie really know how to spoil their guests.  We went through 15 bottles of wine!!!  Aren't they so wonderfully generous?! It was a fun, fun night.  And I have found all the fun nights filled with laughter to be very healing for my soul.  However, trust me when I say I felt like crap the next morning.  But it was worth it.  I almost said, I will never drink again. But then realized that just isn't realistic.  Luckily, Tom was fine (and oh so thoughtful) and let me stay in bed till NOON!!  After a jug or two of Gatorade, and some extra hours of sleep, I was feeling like myself again.  I even took all the Christmas ornaments off the tree.  So I was productive.  Not too shabby.

On Sunday, I ran 10 miles with some friends (The Mimosa 10-Miler).  It was so WINDY!  But, it was still fun.  Afterwards, we hung out with good company and good food.  It was a great way to start the day.

For New Year's Eve, we had our friends Mike and Marcy over for dinner.  Tom and Mike are both foodies and love to cook.

Mike and Tom busy at work.

For the girls:  Mashed cauliflower (it was SO good) topped
with Sea Bass and shrimp with a yummy sauce.

Butternut squash and brussels sprouts salad.

For the guys: Hanger steak (I think?) with chimichurri
sauce and baked spinach with swiss cheese.

For dessert, awesome pound cake that Marcy
made me for my birthday (which is on Christmas).

Topped with a home made whipped cream and fruit.
YUM!!!

After that meal, we were done.  There was no way we were staying up to see in the New Year.  Which was fine by all of us.

This morning, I got up and ran four miles.  Then we went to Mike and Marcy's for brunch.  That was yummy, too.

I only have one New Year's resolution, and it is the same as it was last year... be better about responding and handling my e-mails.  I am terrible at handling my e-mails.  If you've ever e-mailed me, then you know this to be true.  So, I'm going to try it again because it is something that I really want to improve.

Oh, wait.. I have one more resolution... and it is to make time to blog more regularly.  I will be healthier because of it.  I don't know about you readers of it, though.  ;-)

Unfortunately, that is all I have time for tonight.  I will have more for you soon, though!

Happy New Year, my friends!
~Christy xo

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