Saturday, November 30, 2019

Day 13 Update

Wednesday, November 27

Whew, I am feeling especially tired today.  As I got up and got ready to come into the hospital this morning, I was kinda shocked at how tired I felt.  I said to myself, we are only on Day 9 - that's nothing!  We've done way longer before - many times - and I don't remember feeling this run down.  I actually thought to myself, how in the world did I handle her two month stay in DC?  Heck - I even walked to and from the hospital every day.  HOW DID I DO THAT?!  It is funny, I hear that all the time from people - I don't know how you do it.  Well, to be fair, I don't, either.

Honestly, it feels like that two months was just yesterday.  But, it will be two years come February.  Can you believe that?!  How was that almost two years ago? It is as if I was already tired from that stay and this one happened right after.  I guess that just proves that some "stuff" never goes away.

Harlie is back on trach collar (off the vent and pressure support).  They put her on trach collar at 9 am and it is now 2:15 pm and she is doing well.  She is on 55% oxygen, so that's good, too.  Still too much to go home on, but she's getting there.

Caylee came to visit today.  And my friend Shawn showed up with pies from Proper Pie.  That was such a nice surprise - thank you, Shawn!

PT came and she actually got up and walked around the unit.  That went well.  The Turkey Trot is tomorrow morning.  Harlie's teacher, Laura, offered to come and sit with Harlie so I can go to the race.  How nice and generous is that?

Thursday, November 28 - Thanksgiving Day

So, the race was this morning and it was amazing.  I haven't heard the exact final number, but I think it was just under 600 people!  Kat Simons and Skip from Mix 98.1 were there.  Click here for their Facebook live video at the start. My friend Jill Blankenburg sang the National Anthem and she did an awesome job!  Really, she is so, so good!  Andy Moser from Go to Eleven Racing and Sally Young from We Heart Harlie & Friends, did an amazing job organizing this event.

Oh, a few days before the race, Cooper and I were looking at the list of registrants and he said, "I love how many families are signed up."  I thought that was so cute.

I am so bummed.  I left my phone in my car, so I didn't get to take any pictures.  Plus, there were people there that I specifically wanted to find and thank in person, but I never saw them!  There were were just so many people and I am so tired, my brain is just not working right.  People like Rob Allen and Brad Onofrio - they were supposed to push Harlie, but since she wasn't there, they pushed an empty stroller in honor of her.  And EMTs, Andy and I don't know who else he brought - from Lakeside Volunteer Rescue Squad.  Thank you to every single person who chose to spend their Thanksgiving morning with us - volunteers, athletes, family members, supporters, etc!  We are all so grateful for each and every one of you!!!

It is now 2:00 pm and me and Cooper came down to the hospital to hang out with Harlie.  Her teacher sent me a text earlier to bring Harlie's speaking valve.  I couldn't find it so I asked Laura to ask Harlie if she knew where it was.  She did.  It was right where she said it was and it has been almost three weeks since she wore it last.  Pretty impressive if you ask me.

So, she put it on as soon as we got here and started talking and singing.  I told her to put a movie on so the three of us could watch it and she said, "No, I have too much singing to do."

Then Cooper made a noise that she didn't like.  She said Cooper, stop it - over and over again.  Then she said, "Mom. Why did you bring him?"  She is ruthless.

My family came to the hospital at 4 pm to have dinner with us.  The cafeteria had Thanksgiving dinner.  It was surprisingly not bad!

Lee (bottom left) was photoshopped in since he is the one that took the picture.
After we ate, we went to the family waiting room outside the PICU.  We took turns taking people back to see Harlie. 

Nana and Harlie

Harlie and Maggie

Cooper, Harlie and Murphy
She had a really good day today.  They got her down to 30% oxygen.  Her respiratory therapist said I should bring in our portable oxygen concentrator so we can put her on it here and make sure it is enough for her.  I'm thinking we can probably bring her home tomorrow!

On the way home Cooper said, "It was a good Thanksgiving.  I had chocolate cake and Dr. Pepper!"  I love that he didn't think spending Thanksgiving in a hospital was a bad thing.  In fact, we had a lot of fun, all things considered.  Having family here tonight really lifted our spirits.

Friday, November 29

I can't believe it, but I got a parking spot on the first level which means I don't have to put Harlie in the crummy parking deck elevators.  I was totally confident we would be bringing her home today.

I was so wrong.

Apparently she had a coughing episode last night and they had to turn her oxygen up to 60%.  We were thinking that once she woke up, she would take deeper breaths and be able to come back down.  Unfortunately, that didn't happen.  She sounded so dry and it was difficult to suction her.  Luckily, Friday is trach change day - so we changed it.  And, wow, am I glad we did!  She had a huge plug at the end of it.  We were hoping that would improve things for her.  It didn't.

Throughout the day she had an increased work of breathing and need for more oxygen.  I think the lowest they got her was 45%. 

Saturday, November 30

So, yesterday I worked on this blog post for several hours.  As you can tell, I try to write when I can, but there are LOTS of interruptions in the hospital and it is very hard to focus.  I finally finished and when I hit the publish button, it just went away.  I was so upset.  It is now 6:00 pm and I am finally trying to re-write what I lost.

Last night Tom and I were feeling very down.  This roller coaster we live can be so exhausting.  The ups, the downs and how quick things go back and forth... it wears on you.  We are constantly re-grouping and changing our attitudes to make the best of whatever is happening.  It gets old and we were pretty angry about it last night.

This weekend we were supposed to go to Pittsburgh, PA to see Tom's family.  They planned a surprise party for his mom and Cal, in honor of their 25th wedding anniversary.  That event is tonight.  Then we were supposed to go to the Steelers vs. Browns game on Sunday with our friends Mike and Laura.  Caylee (Harlie's nurse) and her boyfriend Blake won two tickets to that game at the We Heart Harlie & Friends Gala.  So, we all had plans for that day.  Clearly, we had to miss all of that.

We have lived not being able to make solid plans for 13+ years now.  It is very frustrating.  ALL of our plans come with - well, as long as Harlie doesn't get sick. We see so many people who have the freedom to want to do something, plan it, look forward to it and then go do it.  Not us.

A little while ago, an amazing opportunity landed in our laps.  My friend Mona works for a company helping veterans.  They were looking for some veterans (Tom was in the Navy) to go to New York, and go to the Christmas tree lighting at Rockefeller Center and be on stage with Hoda Kotb!!!  She asked me if we wanted to go.  I told her that seeing that tree - at any point - has been on my bucket list.  I can't imagine being at the lighting of it!!!  So, of course I said YES!  We get to wait in the green room until it is time to go on stage.  A sponsor for the program purchased our airfare and hotel accommodations.  I just can't believe it.  Insert giddy face here.

A couple of weeks ago, Mona said there was a glitch.  There has to be a rep "handler" on stage, so there isn't room for all five of us.  One of us has to wait in the green room and can't go on stage - and it can't be Tom since he's the veteran.  Clearly I can't ask one of my kids to miss it. So, it has to be me.  Insert are you kidding me face here.

It is disappointing that a company would ask a family to exclude a family member for something like this. Unfortunately, in our case, I feel like it is adding insult to injury since we already have to do that way more than we should.  So often, we have to exclude Harlie from activities she just can't do.  It kills me.  Insert sad face here.

But, as we often do, we have to make the best of it and the bottom line is that four of us will get the experience and I will still get what I've always wanted - to see the tree.

With only a few days before Wednesday, we were feeling pretty crappy and I hate to say it - pissed.  I don't want to miss this.  I don't want Harlie to miss this.  But, we can't take her on 8 liters of oxygen.

Anyway, I got up and came to the hospital this morning.  She had a decent night.  My niece Jordan and her husband John Mark, sent Harlie some stuff she can do in the hospital.  She loved it.  Here she is making necklaces..

My friend Sally came to visit and bring Harlie a turkey trot medal.  She loved it.  They rounded and we talked about how she went backwards and is just not progressing.  I said that I feel like it is my job to give them hints about her that might help them do their jobs (since they just met her and I've known her for 13 years). At this point, I have never seen her need so much oxygen for so long - even with "big" pneumonia.  So, I'm out of hints - except for one thing I noticed... her legs look swollen to me.  And I asked them if she could take a shower.  Her BAHA (hearing aid) site looks scabbed over and I really need to wash her hair and get that cleaned up.  Plus, she just needs a shower.  She hasn't had her hair washed in two weeks.

So, they ordered x-rays and blood work.  And the doctor examined her legs and said she has pitting edema - definitely has some extra fluid in her legs.  So, she ordered Lasix to help get that fluid off.  And they wanted to get another weight on her.

She got really ticked at us for the blood work - even though the nurse was able to pull it from her IV - this is the same IV she got in the emergency department two weeks ago!  Pretty remarkable.  Then, she was ticked that I was making her get a shower.  We made her walk to the shower (just a few rooms down the hall) and she griped about it until I started washing her hair.  Then, she was happy about it.  We got her weight (up FOUR pounds since she was weighed in the ED 13 days ago - so yes, she definitely has some fluid that needs to come off).

While I was changing her trach ties, I thought, hmmm.... maybe we are over thinking this.  Maybe it doesn't really matter how much oxygen we are giving her.  So, I told her nurse that I wanted to see what she would do without it.  She was okay with it.  She desatted to the low 80s and stayed there.  Before she would desat to the 60s and 70s.  So, she has now been on ROOM AIR for several hours and is staying in the low 80s.  I've actually seen 86!

She looks good - not working too hard and is in good spirits.  Very different than yesterday.  I really think that making her mad and upset (she cried) made a very positive difference in her opening up her lungs.  That's an actual thing in babies.

All showered, clean and feeling better!

Her doctor came back and we chatted - we are all in agreement that if she does okay tonight and looks like this tomorrow - we can take her home!  Man, things change so fast with her!

So, fingers crossed that we got the miracle we wanted.  It would be so amazing for us to go on this trip together.  It would be even more amazing if something changed and they let me go with my family to see the lighting on stage.  But I guess beggars can't be choosers.

This has been a very choppy post and I'm out of time, so please forgive my typos, etc.  Thank you for all your love and support - as always!

Much love,
Christy xo

Tuesday, November 26, 2019

Day 8 Update

Hi!  Since it has been a few days, I thought I would give you another update on Harlie.  She went on breathing support via the vent (CPAP) on/off Wednesday.  She really didn't want it and fought anyone who tried to put it on.  I asked them to try putting it on her at bedtime, because I thought it would help her sleep and she wouldn't fight it once she realized that.

When I got to the hospital early the next morning, her nurse told me that she slept all night on trach collar (which meant NOT the vent).  Ugh.  I was a little miffed. 

At rounds that morning (Thursday) I said that they weren't doing anything for her that I couldn't do at home.  I'm not being argumentative, just stating the facts.  And the more time you spend in a hospital, the more likely you are to pick up something else to battle.  She was on oral antibiotics (not IV) and she was only on oxygen, with no breathing support.  As you might've picked up from my last post, I don't rush her to the hospital with the first sign of sickness.  I do ALL I can possibly do at home.  When I feel like she needs more than I can give her, that is when I take her to the hospital.  So, at that point, it had been four days since I brought her.  The attending doc said he was comfortable with her work of breathing.  But, he'd only met her on Monday.  And on Monday, I was no longer comfortable with her work of breathing.  I think I made rounds a bit uncomfortable that day, which I hate.

I really appreciate it when people tell me I'm doing a good job advocating for her.  But, arguing with medical professionals about her care is NOT what I like to do.  And it is hard to put my trust in a "new to us" doctor.  I've just seen too many close calls with Harlie.  It really is SO hard to be her mom sometimes.  I don't know if I'm right or not.  And I know I have PTSD and sometimes that can affect the way I think and react to situations.  Sometimes that can be a positive, sometimes a negative.

Regardless, all is well and she went on CPAP late afternoon Thursday.  Not that much has happened since then.  We've just been hanging out waiting for her lungs to get better.  She gets chest PT and breathing treatments.  She definitely turned the corner, each day talking more and looking better in general.  Yesterday (Monday) I was actually hopeful that maybe - with some luck - we'd get to bring her home before Thanksgiving.  They were able to come down in support settings and the next step was to take her off CPAP and start trach collar trials.

Today (Tuesday) I came in and she just didn't look as good, and her numbers weren't as good.  They trialed her on trach collar for two hours.  They had to go up to 60% oxygen (room air is 21% and while on CPAP she was on 35%) and she had a notable increased work of breathing.  Darn it.  I am no longer hopeful that we can take her home before Thanksgiving.

Harlie got up and sat in her wheelchair this morning.

She had her first visit from PT yesterday (Monday).  They got her up and she took a few steps.

I asked her if she wanted the other sock on, and she said no.  What is wrong with her?  Who can wear just one sock?!?!?! 

Harlie's teacher and speech therapist came to visit.  Today the weather was so nice, I left and went outside and ate my lunch and took some time just to be out of the hospital for a little bit.  They stayed and hung out with her.  They said that they both miss her.  Harlie has now been out of school for two weeks! I am so thankful for these two ladies.  They are so good to her!

Her teacher (Laura) and her speech therapist (Sharon). 
They brought her a spiral doodle thing.  She really likes it.

She even tried to do it while she was getting her chest PT. 

This was her from the other night.  Her and her sleep masks!  She is such a riot.  

Speaking of her being a riot - she has said some funny things...  the other day she asked, "What about your job?"  I said, "They know I'm here and it is fine."  She was silent for a second or so, then said, "Your boss is going to fire you."  Haha!  I said, Patrick Carollo and Bill Jeffries of Kane Jeffries, LLP is not going to fire me.

She has been asking all of her nurses, doctors, respiratory therapists (RT) questions like - what's your favorite animal?  Who is your favorite super hero?  Tonight she asked her RT, "What is your favorite band?"  She said, "No one you've heard of."  Harlie said, "I like Taylor Swift. Have you ever heard of her?"  Haha!

The other night her RT came in to tell her it was chest PT time and Harlie said, "No thank you, I'm good."

The first few days we were here, she would just grab the suction catheter out of their hands and suction herself.  It is so funny to watch her interact with people and see them learn her personality.  She's really so funny.

Okay, that's it for now.  We will try trach collar again tomorrow and hopefully, she will do better.  It is really hard to live and not know what the next few days will be like.  Especially hard to plan Thanksgiving Day.  The Turkey Trot is Thanksgiving morning.  Tonight is the deadline to register online (you can register at packet pick up or race morning after tonight).  We have 500 registrants so far!  That is so amazing!  Thank you to all who have registered so far!  I can't miss this event!  But, it would be so weird to be there without Harlie!  I absolutely hate it when we can't be together as a family when we should be!  We also have new shirts and we have fleece beanies.  So excited for new merchandise!

Thank you so much for all your love and support.  We really couldn't survive this life without it.  Cooper had a rough day today at school.  He called Tom when he got home and was very upset.  I don't know how, but he had a balloon at school and decided to decorate it with the We Heart Harlie & Friends logo.  He thought it looked a little plain, so he had all his classmates sign it.  He brought it home carefully, so he could give it to Harlie.  Then it popped.  He was SO upset.  But, I think it was just an outlet for him to be upset about Harlie being in the hospital.  He worries about her a lot.  He is very sensitive that way and he misses her so much.  I thought time with good friends always makes things better.  So, I called my friend Bethany and asked her what her kids were doing.  She totally changed their plans - said an SOS from Cooper was far more important.  For real.  She ordered pizza for them and sent her kids up to the house.  I just can't tell you how thankful I am for the people who love us.

Thank you so much!

Much love,
Christy xo

Wednesday, November 20, 2019

Harlie is sick.

Hi! Thank you for checking in on Harlie. Here’s a run down on what’s been up with her:

November 13, Wednesday

Her temp went up to 104.5 on this day. We took her to her pediatrician that afternoon. She told me to minimize the strain on her heart, we should alternate between Tylenol and Motrin pretty regularly. She tested negative for the flu and strep. So, we kind of figured it was probably just a virus, but to be on the safer side, she put her on Amoxicillin, just in case. 

Despite the meds, she continued to get fevers. The highest came on Thursday, I think, at 5am at 105.5. Clue #1.

The dogs knew she didn't feel good, so they tried to do their part to make her feel better.

Morty (front) Mabel (these two are brother and sister) and Harlie

By Friday, I think she was staying in her bed all the time. And she was on oxygen 24/7. Normally, she’s on room air during the day, and oxygen only at night. And at night, it is normally just a little bit. But, now we were using her oxygen concentrator AND we had to bring up an actual oxygen tank and ADD it to her system to give her more oxygen. Clue #2

Honestly, looking back, this might have been enough to tell me to take her to the hospital. But, us special needs moms have a lot of equipment and know how to use it. And at the end of the day - no one wants to go to the hospital.

Saturday night was terrible. She coughed all night long. Every time she would cough, she would take off her trach collar and she would start breathing room  air. This would lower her oxygen saturations (sats) and her pulse ox would alarm (less than 80 causes the alarm). Normal people are very close to 100% sats. She is mid-80s on room air, when healthy.

Sometime during the night, she started coughing up blood. This isn’t THAT alarming with a trach, as her trachea is friable and could’ve easily been really irritated by all the coughing. Clue #3. So, about every 20 minutes or so, she would start coughing, remove her trach collar and then desat into the 70s and one of us would have to get up and go put her trach collar back on. This made for a very long and restless night.

Sunday was fairly uneventful. Other than her waking up a complete mess due to the bloody coughing. We had to put her in the bath first thing and while I was bathing her, Tom had to complete strip her bed and remake it with fresh linens.

Caylee worked that day and at one point she said to me, “So, at what point do you get nervous?” Well, to be totally honest, I was really worried about her. But, I was trying to ignore it. Unfortunately, due to so many traumatic experiences, I have to ignore a lot of my daily worries and fears. So, that’s my go-to coping technique. I was thinking she was sick, yes. And she was on a lot of oxygen, yes. But, we have oxygen and she is happier at home.

At some point during that day, I think, I noticed that when she talked, she had to say one or two words at a time and take a breath in between each word(s). Yeah, that’s not normal and definitely not a good sign, either. Clue #4.

By bedtime, Harlie said, “I think you need to take me to the hospital.” Clue #5. So, Tom and I talked and decided that I would take her to the emergency room in the morning. Not only was she not improving, she was getting worse. She got up out of bed to go to the bathroom and brush her teeth. As I was standing next to her I saw her turn blue. She went on about her business as if everything was fine. I quickly grabbed the oxygen tank and hooked her up and then checked her sats - 57!!! That is SOOOO low!

She recovered quickly on several liters of oxygen. We got her back to bed and settled for the night. At 1am, I went in to tend to her and I noticed that she was working really hard to breathe. Clue #6. I went in and woke Tom and asked him to take a look. We decided I would take her in then. So, we got dressed and Tom went in to get her up. Then he asked me to go look at her. She was a lot more calm and wasn’t working as hard to breathe. So, we were  thinking, it isn’t as urgent as we thought. We really didn’t want to wake her up in the middle of the night and take her. So, we decided we would let her - and us - sleep a little longer.

I feel like I need to explain that after all I’ve seen, all we’ve seen - what we call an “emergency” might look a bit different than what someone else thinks is an emergency. And to go to the emergency room means you have an emergency. And, to circle back, I didn’t think we had an emergency on our hands.

I woke up at 5am and got a quick shower, packed a bag and Tom got Harlie up and dressed. He hooked her up to an oxygen tank and carried her downstairs and into the car. Then I drove her to VCU’s Pediatric Emergency Department.

They took her back within like two minutes and got her into a room and started working on her. I immediately felt relieved. I just didn’t realize how worried I was - and in a second, I wasn’t in charge, and they were taking over. Ahhhh….

As they asked me all the questions, I heard out loud Clues # 1, 2, 3, 4, 5 and 6 come out of my mouth. Wow. Why did I wait so long to bring her?!

It is amazing what 13 years of trauma, fear, worry and survival can do to the way your brain functions. Thank goodness the docs in the ED get that! After I answered one of the many questions (the answer was one of the clues) he chuckled and said, “I love your threshold.”

They had her in a PICU room within two hours - pretty fast!

In my defense, it is now Wednesday and she is on 10 liters, 95% oxygen and two antibiotics through her g-tube (in other words, not IV meds). Soooo, technically, they aren’t doing much that I couldn’t do at home. I just don’t have a code button handy or a ventilator only a few minutes away.

Anyway, they did a respiratory panel and it came back positive for Parainfluenza (the virus that causes croup). But, since she was on Amoxicillan for a few days, that could’ve messed up the cultures. So, they are treating her for a few common things associated with her trach (pseudomonas, staff, etc.) just to be on the safe side and put her on Clindamycin and Levofloxacin.

Tuesday was a rough day. She was on 10 liters of oxygen at 95%, just to maintain mid-80s sats. There’s really not much more they can give her, except to put her on a ventilator. She had several really bad coughing fits where she would cough and not be able to breathe and she would panic. It was horrible. No one has really said much about her lungs… they don’t sound terrible. So, I don’t really understand why she has such low sats. Every other time she’s ever need oxygen support, it has been because of her lungs. Even with horrible pneumonia or atelectasis (collapsed lung), we’ve never had to work this hard to maintain mid-80s or seen her sats drop so fast. Regardless, I suggested they start using the vest machine for chest PT. They agreed and are doing them several times a day. Hopefully that helps.

She’s definitely working harder to breathe, even this morning. They haven’t rounded yet, so we’ll see what they say then. The bottom line is that as of this morning, there has been no improvement, if anything, she’s worse.

As far as the rest of my family goes, I am now sick, too. I’m guessing I have the same thing Harlie has, but it is just a cold to me. And Tom has a heart cath on Friday. He can’t reschedule because we really need to do it on this year’s insurance. So, the rest of this week should be fun.

It is now Wednesday night.  Today was a little rough.  During rounds I asked them if they wanted to do another chest x-ray.  The doc said it lags behind, so he didn't see a reason to since the last one was on Monday.  But, in my opinion, she was getting worse and everything I was hearing about her lungs (more upper airway vs. lungs, not that bad, moving air well, only a little bit coarse/junky) just didn't jive with what I was seeing about Harlie.  She looks like she's got a lot going on with her lungs. So, the doc says let me pull up Monday's x-ray.  He then points out all the areas in her lungs that show pneumonia.  
Pneumonia?  That's the first I've heard that this stay.  

Apparently testing positive for parainfluenza implies that there is a viral respiratory infection aka pneumonia.  I did not realize that.   Now I'm really glad I suggested they start using the vest PT machine.  Had I realized it was pneumonia on Monday, I would've had them start it on Monday.  What really threw me is that every time she's had pneumonia, the descriptions  of her lungs were not what I've been hearing this stay.  

Regardless, this new information now makes sense.  And I suggested that they put her on CPAP (ventilator) as her continuous work of breathing was starting to make me nervous.  They agreed.  

So, in summary, they are giving her lots of support.  Overall, I feel like today was a bit of a rough day.  Every time she has a coughing fit and turns blue it reminds me of all the other times I've seen her in respiratory distress and it is like they are all happening at the same time.  It is hard to put into words.  It just scares me and I don't like it.  She is definitely not any better.  Hopefully, with the help of the CPAP, her lungs will open up and start healing. 

Someone from wound care came by and she was great and helpful and she cleaned her wound under her trach and changed the dressing I'm to put over it.  Her wound actually looks better than it has in very long time.  

I will update again when I can. Thank you so much for all the love and support!

Much love,
Christy xo

Wednesday, November 13, 2019

Harlie is something...

Hi!  Just a real quick post this morning. I just can't pass up the opportunity to share my girl's spirit.

Harlie LOVES camping.  Like really, really loves it.  We used to go twice a year, once in the fall and once in the spring.  Well, after her surgery in Boston in August of 2017, she missed a few camping trips.  This has been very upsetting to her.  We planned this fall's trip probably six months ago.  It is very hard to plan all of our families, and the availability of this particular camping spot (which is perfect for all of us).

We are scheduled to go Friday (two days away) afternoon through Monday.  Harlie started packing her own backpack TWO WEEKS AGO.  This is not an exaggeration.

Yesterday, during her home education session, Harlie told her teacher she was too tired to go to school for Art class.  Hmmm, that is NOT a good sign.  So, of course, I didn't send her to school.  I went to work, crossing my fingers that it was just a fluke.  Then, later that afternoon Brandy sent me a text to tell me that Harlie was napping.  UGH!  She only naps when she is sick.  So, I left work a little early and on the way home Brandy called me to say her temp was 103.5.  Why does this happen to her - like all the time????

This morning Tom woke me up to tell me that she was on fire.  Her temp this morning at 5am was 104.5.

I checked on her numerous times this morning, showering her with hugs and kisses because I just feel SO bad for her.  She knows darn well she is sick and that camping is only two days away.

Then, at 9am this morning, she comes downstairs and does this:

Isn't she something?! She received that toy as a gift when she was in the hospital a while back.  I can't possibly express how hard it is to be her mom and dad sometimes.  Sick kid = easy decision, you don't take her camping.  But, look how hard she pushes forward!  Disappointing her is so painful.  No way would I ever put her health and well being at risk for something she wants to do.  But, man, she doesn't make this job any easier sometimes. 

Also, this kind of ties in to a Facebook post by We Heart Harlie & Friends...

Time to start making your gratitude lists before Thanksgiving. We are grateful for so many things:
1. A community that supports and lifts us up
2. A group of families and children that bring us purpose
3. The ability to run in the upcoming Turkey Trot
Join us on Thanksgiving Day for the West End Orthodontics Turkey Trot benefiting We Heart Harlie and Friends! Registration ends on 11/17! Only 6 days left to guarantee your race shirt!
-In Crump Park located in the Far West End
-4 Miles (2 loops of 2 miles each) with minimal inclines
-Easy Parking
-Dogs and strollers welcome
-Hot Chocolate and Bagels after you finish
Thanks West End Orthodontics for sponsoring!  You can register by clicking here

I would like to focus on #3 - the ability to run in the upcoming Turkey Trot.

Really, you could change that to "the ability to _____________."

Think about that for a minute.  I think about that ALL the time.  Seeing Harlie's body struggle for things most of us take for granted, has totally changed the way I live my life.  Thinking about what I have the ability to is what makes me go to the gym, even when I'm tired, sore or don't have the time.  It is what made me run the Richmond Marathon nine years ago.  It is what makes me (and Tom) work so hard to do whatever we need to do so Harlie can experience stuff she enjoys.

Anyway, I hope you take advantage of the things you are able to do.  That's all I have time for this morning.  I will let you know how Harlie does....

Thanks for reading!
Much love,
Christy xo

Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...