Sunday, March 30, 2014

CT Scan Results

I can't believe I didn't know that her doctor called me on Friday and left a message!  I just listened to it and he said that they reviewed her CT scan, and it did NOT show any arteriovenous malformations.  So, no collaterals.  Which means her lung is just not working sufficiently anymore.  Crap.


He said he would call me again on Monday to discuss it.  So, I'll know more tomorrow.  

Crap.  Crap.  Crap.

I'm going to go cry now.  Thank you for all your thoughts and comments regarding my last post.  You are the best.

Much love,
Christy xo

Lung Details

I've been feeling blue these last few days.  And usually I don't want to write when I feel that way.  But, I'm hoping that writing about it will help me shake it.

Harlie had her CT scan on Friday.  The night before I told her that she had a doctor's appointment in the morning and that we would have to wake up early.  I don't normally tell her about just regular old appointments.  She must have noticed the difference and sensed that this was a bigger deal.  So, she started to cry - a real sad cry.  Ugh.  I told her that it wasn't that big of a deal and that I was going to be with her the whole time and that it would be over quick.  No over night, I said.  She cried for about ten minutes and signed "scared."  There are times I'm not that sympathetic, and tough love is the way to go.  But, this was not one of those times.  It kills me that she has to be scared so much.  And for darn good reason, too.  But, she eventually believed me, I suppose and went to sleep with no tears.

She's usually a BEAR to wake up.  I have often said that I have no idea what we're going to do when she is a teenager, because that girl will sleep past 10 am every day if we let her.  I got up at 4:15 am and got myself ready.  Then I woke her at 5:15.  I went in her room, put in her hearing aid and whispered, "It's time to wake up" in her ear.  And can you believe that girl sat right up?!  That is a FIRST for sure!  I guess telling her the night before was the right way to go!

Anyway, we left the house right on time (another amazing feat, if you know me) at 5:45 am and arrived a few minutes early for check in.  See?  I just haven't been myself, lately!

Then we hung out in the waiting room... for a long while.


She really cracks me up.  Despite the tears the night before, she was one happy little girl!

I suppose that the anesthesiologist looked at her chart before calling her back and ended up spending more time than originally planned going over her history.  I'd love to be a fly on the wall when a new doc clicks on her name.  Anyway, we talked and he asked the usual questions.  Thank God she has no issues with anesthesia.  Can you imagine?

They were so kind.  They wanted to let her fall asleep first before putting in the IV.  So thankful!  The reason she had to have anesthesia is because it was a CT scan with contrast (which requires an IV) and she has to lay really still for several minutes.  Considering there's contrast involved, it's not worth the risk of her moving.  I believe they can only give you so much contrast in a specific amount of time.

All went fine, of course.  I wasn't worried.  She woke up a little mad, though.  The nurse didn't apply pressure to her IV site long enough to stop the bleeding, so she bled through her dress.  That was very upsetting to her.  Blood got all over her other hand and she kind of freaked out.  Of course I had extra pants, but no top.


We left the hospital around 9:30 am.  As we were walking out, I saw Harlie's nutritionist from when she was a baby.  It's always good to see her.  We chatted a bit.  And then Dr. Williams came up to say hello.  He was one of her PICU docs from back in the fall when she had the infection in her jaw.  He didn't have to stop.  It wasn't like we passed each other and he saw that I saw him, so he felt like he had to stop.  I didn't see him and he could have walked right on past without me being the wiser.  But, he stopped.  Isn't that so nice?  He asked how she was doing and what was going on.  I gave him a very brief update.  It is very nice to see friendly faces there.  And I always find myself surprised that people remember us.  But, I'm told Harlie's pretty hard to forget.  It's so funny what I find to be normal.  And to others, she's so unusual.

Anyway, I took her straight to Target to get something for being so brave.  If she could eat (or liked to) I would take her for ice cream.  Oh well.

I don't know when I'll hear the results of the CT scan.  I hope this week.  I hope that it will tell us something.  I don't think I ever told you about her appointment with her pulmonologist a few weeks ago.

Here's the recap.  We saw him.  He had already spoken with her cardiologist (Dr. G) and the head of the radiology department about what tests she should have.  I love it when they come in prepared.  He said that the best test would be a cardiac MRI.  Of course she can't have an MRI because she has a pacemaker.  No magnets can be near her.  So, no MRI.  I knew that was going to bite her in the butt one day.  We chatted some more and I wanted some clarification on what I was thinking.  I've been asked questions by family and friends and I wanted accurate answers to give them.

1.  Are you happy that it's not her heart that's causing her oxygen requirement?  No.  You need both organs to live.  They are both important.  And it seems that there are more options when it comes to a heart.  Plus, one can get a heart transplant and go on to live a long, good life.  It is not the same with the lungs.  How many lung surgeries have you heard of?

2.  Can she have a lung transplant?  No.  A lung transplant is trading one disease for another.  It isn't a cure - ever.  And it only buys you time.  Like five years.  If we have to consider a lung transplant, we will be very sad people.  That is a terrible position to be in.  I really can't think about it.

3.  If her lungs just don't work right anymore, is there anything that can be done to "fix" them?  No.  Once all the parts in there stop working, they are done.  No fixes.  Refer back to question #1.

4.  Can she live with just one lung?  Yes.  You can live with one lung.  Clearly her heart makes it more complicated.  But, it is "believed" that her remaining good lung could handle the blood flow.  I don't think there is another person walking this earth like Harlie, so it's hard to say for sure.  The obvious negative with relying on just one lung, is that you only have that one lung.  So, when she gets a respiratory illness, it will affect her greatly.  And her physical activities have to be adjusted accordingly, meaning no contact sports or being on the top of the cheer leading pyramid.  Those are his words, not mine.   Because I always assumed those were out, even with both of her lungs.  She can't even walk around the block.  I love how both of her doctors went straight to, "Well, she'll never run a marathon."  And that's said like who the hell wants to do that anyway?  

Um, me?

So, no contact sports - fine.  No cheer leading - fine.  I don't want her to wear make up anyway.  I hate that they have little girls do that.  No running?  Ugh.  Honestly, I knew that all along.  That's no surprise.  Heck, she can't even walk around Target or the grocery store.  I don't know what we're going to do when I can't put her in the cart.  Anyway, it does make me sad that she will have all these "nos" and "can'ts" in her life.  As parents aren't we supposed to tell our kids they can do anything they set their mind to?

And the worst thing about having one lung?  If there's trauma (like in the activities mentioned earlier, or a car accident - which would be the most likely for her) and her lung collapses or is punctured, she's done.  Meaning death.

While discussing what tests we should run to confirm that her right lung has been damaged beyond repair, Jim came in to test her CO2 levels.  The two of them started talking about how a certain test would be done with a patient with a trach and Jim asked Dr. Schmidt, "So, what are you going to do?"  And Dr. Schmidt said, "Whatever Mom tells me to do."

I had to laugh!  I love him!  I immediately thought of this thing on Facebook that was going around.  It said something like "You know you're a parent of a medically fragile child when..."  And one was "when you tell the doctor what to do."  Too funny.  Another one was "when you take care of other things before you take your child to the ER."  I told Dr. Schmidt about it and said I may or may not have taken a TRX class at the gym before taking Harlie to the ER.  We had a good chuckle.  Oh, the things I find amusing....

Anyway, he said he would have to do some research and call me later.  Which he did.  He spent a lot of time going over her history, and called me the next day.  He said that they want to rule out a collateral vessel(s) before doing anything else.  I suppose that could be a cause for her poor sats coming out of that lung.  He also said that after talking with some other doctors, they are all in agreement that they want to try to save this lung.

The first test was this CT scan with contrast.  We'll see what information it provides and then go from there.  In discussing the kinds of tests she needs, Dr. Schmidt said, "Ideally she would need a _______ (I can't remember which test it was) and she would need to hold her breath like 20 times in a 45 minute time period (or something like that).  I looked at him and said, "Let me tell you what would be ideal."  He totally got my humor.  We had another good chuckle.  Then I told him that I don't think she knows how to hold her breath.  So, that test is out for now.

So, in summary, here is where we are with her lungs...

As she is right now, with a full, good left lung and one remaining lobe "limping" on the right:

  • She needs oxygen.  I can't believe it's been almost 16 months of oxygen 24/7.  I just can't believe it.  
  • She has a hard time trying to speak.  When you talk, you hold your breath.  She can only pronounce a few syllables before she has to take a breath.  She just doesn't have the lung capacity to hold enough air.
  • She can NOT tolerate any exercise.  And I don't mean exercise like you go to the gym to do.  I mean just normal, walking around kind of exercise.  A couple of weekends ago we had a friend over and his kids.  Harlie wanted to play in the backyard with them and so I let her come off the oxygen for a bit.  After some walking around I could hear how hard she was breathing and saw how blue her nails were.  I checked her sats, and they were 71.  That's just terrible.  Terrible.  She can't even play.  Kills me. 
  • Last night (really, this morning) she was awake.  Maybe she had a bad dream.  Tom said he had to get up to drain the water from her tubing (condensation from the humidification) and she signed "scared" to him.  A little while later, it had to be drained again, so I got up.  This was about 4 am this morning.  She was still awake.  She signed "potty" and disconnected herself from the oxygen and the pulse ox and went in the the bathroom.  After she was done she signed "Mommy's room" and went in our bed.  She has never been able to sleep in our bed.  Never.  After a minute of letting her lay there, I held her tubing up (showing her it needs to be connected) and she sat up.  I carried her to her bed.  And when I hooked her back up, her sats were 77.  In a matter of five minutes, her sats went from the low 90s (on oxygen) to 77 (no oxygen) and she barely walked at all.  I carried her back, even!  

I'm hoping that it's something easy and simple (like collaterals) causing her low sats.  But, clearly, I would have to say that's unlikely.  I am going to continue to hope.  But, I know in my heart that we might seriously be disappointed.

My thoughts have been heavy these last few months (or 16).  I don't want her to lose this lung.  But I can also see that as it is, it isn't doing her much good.  The whole thing just makes me sad.  She's seven.  How many lives does this girl have?  I can only surmise that if she has to have that lung removed, that living with her one lung must, in some way, reduce her life expectancy.  It has to increase the risks in every way - infection, illness, collapse from anesthesia, etc.

Obviously I can't let my thoughts go there.  But, sometimes I can't help it.  I try so hard not to worry.  But, what mother doesn't?  And these worries aren't crazy, out-of-the-realm-of-possibility worries.  They are very real.

And when I can't sleep, I start to think of living with this oxygen.  Will we know more about what to do before summer?  I can only assume that she'll still be on oxygen when the pool opens.  What then?  Can I let her go in the water with oxygen?  I think the answer is yes.  But what about the tubing?  That can't be safe for other kids.  What if they don't let me put her in the water with the tubing?  How can I possibly NOT let her go in the pool?  Seriously, I can't even think about it.

The kicker to my blues yesterday (it was a bad day) was that we couldn't take her to the movies.  Tom took the boys and I stayed home with her.  She was pretty junky and required a lot of suctioning yesterday.  There's no way I can take her to the movie theater, on a rainy Saturday, when I have to suction her a lot.  While she would be fine, the suction machine would be a major distraction (annoyance) to other movie goers.  The fact that she has to miss out on so many normal activities (and knows about it) just makes me mad.

Anyway, I have to stop now.  I hate complaining about this stuff.  It doesn't do anyone any good.  And I think I might feel a bit better now that I've gotten all that off my chest.  I'm sorry if you now feel worse!!

I will let you know what I find out about the CT scan as soon as I hear.  As always, thank you for reading and thinking about our sweet girl.  You get me through these tough times.

Much love,
Christy xo

Tuesday, March 25, 2014

Quick Update

I have so much to share with you.  Here's a snapshot of what's been going on.

We had Harlie's appointment with her pulmonologist on the 13th.  I will go into more detail very soon.

The Deep Run Marathon Dance was the 14th and 15th.  It was awesome.  What an amazing experience!  The whole thing was incredibly impressive.  I really want to tell you all about it (and show you pictures and videos) but all that stuff is on my other computer, so I will have to save that update for later.

I spent last week in bed, sick with some horrible flu-like virus.  It's pretty much gone now.  While I feel SO much better, I can tell that I am not fully back to 100%.  My lungs and exercise endurance is dragging a bit behind.  Which is perfect timing with the Ukrop's 10k coming up on Saturday.   I don't know why I signed up.  No more races after this one and my half at the end of April.  None.  At least for a long while.

Now that I am better, Tom is sick.  It's much worse when he is sick, since he is the one that provides dinner for the family.  I am going to try really hard to make dinner tomorrow night to give him a break.  I know that sentence makes me sound like a complete idiot.  But, as I've had to learn so much in certain areas (almost every major medical specialty) some basic brain function had to be sacrificed.  The cooking was the first to go.  Poor Tom.

Cooper started soccer again and is loving it.  Apparently the last few months of growth and maturity made a difference, because Tom said he could immediately see that Cooper was much more into it than in the fall.  I missed all the action because I was sick.  But, he scored two goals in his very first game!  What a turn around!  I also signed him up for basketball through his preschool.  I love that they offer programs like that.  He stays for two hours one day a week to play there.  Awesome.  He liked his first class earlier this week.  We'll see how it goes.  It is amazing how incredibly different each parenting experience is/has been for each of our kids.  Murphy has NO interest, Harlie is unable and Cooper is ALL in.  It's a good thing I'm so flexible...

I want to share a video I have of Harlie tubing herself her dinner.  But, it's on my other computer.  So, I will have to save that post for later, too.  If you're on Facebook, you might have already seen it.

My Mom had her lumpectomy and all went well, I think.  She has another appointment next week and we'll know more then about the next steps (radiation, etc.).  But she isn't in any pain and she is in good spirits.

My younger brother, Cabell and his fiance are expecting their first baby in August.  They just found out they are having a boy!  We are all excited about that.

Now that the Deep Run Marathon Dance is behind us, we are setting our sights on the We Heart Harlie and Friends event May 3rd.  It will be here before we know it!  Here is the flyer...

Registration for the 5k and Kid's Fun Run is open and new shirts are for sale.

We are going to have Women's shirts in Tahiti Blue, Purple, and Vintage Black, Men's in Vintage Black and Envy (green) and Kid's in Turquoise.  Pictures of the shirts will be up on the website soon.  If you have come in the past, please note the new location.  It is going to be at Deep Run High School this year (instead of Glen Allen Elementary).  We outgrew the space at Glen Allen, which is a great problem to have!

I can't remember what I've told you about We Heart Harlie, but it has grown into a foundation!  It is now We Heart Harlie and Friends and Lynda has been working with an attorney and CPA to get all the paperwork and applications done to make it be an official foundation with a 501(3)(c) status!  It is so exciting!  Here is the new website, which is in its beginning stages as Lynda is adding to it and adjusting it as necessary.

We are so excited to be able to help more families now.  Each year we will select different families to help.  We have a board, and it is almost full.  If you would be interested in being on the board, please contact us and let us know.  And let us know if you, or someone you know, would be interested in donating a product or service for the raffle.  We are so grateful for every donation!

We are hoping to do some more (and different) fundraisers for the foundation throughout the year.  We would like to do an adult only silent auction with food and drinks.  And last night Cheeburger Cheeburger had a fundraiser night where they donated a percentage of the proceeds to We Heart Harlie and Friends. How cool is that?! Tom and I ventured out and took the kids.  It was so much fun!  There were so many Glen Allen Elementary teachers there!  It is so sad that we don't get to see them since Harlie is still on home bound.  But it made seeming them out (and wearing their We Heart Harlie shirts) even better.

I have so much more to share!  But, I have to stop for now.  Harlie has a CT scan scheduled for Friday.  I want to share what I know about that so far.  So, I am hoping to update again tomorrow or Thursday.

Thanks for checking in!
Much love,
Christy xo

Wednesday, March 5, 2014

Heart Cath Report and cardiology appointment

Harlie's last heart cath was December 13, 2013.  I received the report a few weeks ago and met with her local cardiologist last week.  The number that we (okay, I) was most concerned about was the 24 with a line over it (to the left of the pink circle).  The 24 is the pressure of her Fontan.  I won't even try to describe her heart anatomy (or function) in this post (other than that her heart was formed in a mirror image - so what's normally on the left, is on the right, etc.).  I guess I could have color coded the picture before I uploaded it.  That would have made explaining it a lot easier.  Oh well.  All you really need to know is that her heart is nuts.  And, while the 24 isn't great, it isn't "the" problem.

The main problem is the circled 86, which is circled by a pink marker.


That is the percentage of oxygen in her blood as it leaves her right lung and enters her heart.  Her circulation works like this:  heart is single ventricle, so it pumps in one direction only - to her body.  Red blood (fully oxygenated) leaves her heart and goes to her body.  It returns from her body (blue, needing oxygen) and goes straight to her lungs to get oxygen.  After it gets oxygen from her lungs, it goes into her heart, to be pumped to her body again.

Since the blood comes from her lungs - fully oxygenated - her sats should be close to 100% (not 86%).  It hasn't entered her heart yet - so her heart defects should not play a part yet.  Plus, I gave her to the cath doc on oxygen.  She was on oxygen in recovery afterwards.  Does that mean that she was on oxygen during the cath?  Because if that's the case, 86 is ON oxygen, which means that it would probably be lower if she wasn't on oxygen.

So, the question is... Why are her sats so low leaving her lungs?

And that means it's not her heart.  It's her lungs.  UGH!!!  This was actually my fear before the heart cath.  I just felt like her heart was probably more "fixable" than her lungs.  If the lungs don't work, I don't think there's much you can do about it.  While her heart is jacked up, but it "works" because they did a bunch of stuff to it, you know?  Plus, all of a sudden, I felt very unprepared.  I was all ready to learn about pressures and crap, and then I had to change gears.  And wait two weeks to talk about it again.  So frustrating.

I can't remember if her cardiologist said that her pressures of 24 are an after-affect from the low sats or not.  Or maybe they are just 24, just because that's her.  I can't remember.  I suppose it doesn't matter for now.  He did say that she has early elevated Fontan pressures.  The pressures go up in time, that's normal.  He said that kids 16 years old and up have pressures in the 20s.  She's 7 and hers is 24.  But, one can live with high pressures.  So, that's not the main issue right now.

So, now we have to see her pulmonologist to see what tests we can do to find out what her lung function actually is.

For those that don't know, Harlie had a chest mass in or around her right lung.  The right lung is made up of three lobes and the left is made of two lobes.  During my pregnancy with her, they found the lung mass and it was preventing the normal growth of her right lung.  After her birth, it became a back burner item, until she was about 8 months old.  The mass was still growing and it had begun to squish her good lung, compromising its function.  So, the mass had to come out and in August of 2007 (she was 10 months old at the time) they removed two of her right lung lobes.  They were able to leave one lobe.  And after that, she did much better.  She was finally able to come off oxygen (after a full year on it) and was able to learn to sit up and crawl.  Life really took off for her after that.

But now, is that one lobe doing more harm than good?  Is it permanently damaged?  Should it be removed?

We see her pulmonologist next Thursday.  And we'll go from there.

The whole thing is frustrating.  I just wish she could get a break.   It seems we are always having to worry about a life-requiring issue (heart, lungs, airway).

Managing her care (from my perspective as her mother) has become very overwhelming.  I have moments when I am confident in my decisions and my observations.  And I have moments when I am NOT.  And in her case now, her symptoms are not black and white.  Everything is grey and open to interpretation.  What if I misinterpret something?

I try to remember the times where I feel confident in what I interpret... for example, we took Harlie to the bowling alley a few weeks ago.  It was a fundraiser for the Deep Run High School Marathon Dance.  Brandy was with us and was focusing on Harlie while I talked (as usual).  Brandy started to notice that Harlie would walk up to the ball return and stop and rest.  Then pick up the ball, and stop and rest.  Then walk - slowly - and bowl.  Then rest.  So, she made her sit down and she checked her sats.  ON oxygen, they were 76!!!  Obviously, that's a sat she just can't tolerate.

So, clearly she NEEDS the oxygen.

Did I ever tell you about her not being able to digest her food when I was experimenting with her oxygen needs?  Well, just in case I did, I'll make it short - I wanted to see if she could tolerate lower sats, without the oxygen.  Her sats seemed to hang out in the low 80s (which I didn't think was that bad) without the oxygen.  But, after a few days, her body wasn't able to process her formula and I couldn't get in all four cans in a day.  So, her body was sending oxygen to main organs (and not as much to her GI system).  So, that means she cannot tolerate low 80s sats.

You'd think I'd be confident by now.  But it's scary to have to be the one to have to notice everything and know whether that thing is important or not.

Anyway, I don't know how definitive the tests and/or any answers are going to be.  One confusing thing is that he said she needs a CT scan of her lungs.  She had one back in June of 2013.  Lucikly, here in Richmond.  So her doc was able to pull it up and read the report.  It doesn't say much other than that her lungs are in better shape than they were in 2007.  Maybe if they did another one, or had that one from June re-read, with the radiologist knowing that her sats are low leaving her lungs, that would make a difference?  At least now we know what to look for.

Her cardiologist said that we will have to let her symptoms guide us and maybe make some decisions on faith instead of hard data.  Which is how we made the decision to remove the bad lung tissue.  He was the one that said it had to come out - and from what I remember, not every doc was in agreement at the time.  Yet, that proved to be the right call.

So, that's heavy on my mind.  And again, I find myself wishing time away.  Wanting to hurry up and just get to that next appointment, that next surgery, that next... whatever.  It's really a terrible way to live.  And I wonder when we'll get to place of just... living.

Another thing that's heavy on my mind is my Mom.  A few weeks ago she found out she has a bit of breast cancer.  We're really focused on the "bit" part.  Of course I don't think that's a real, medical term.  But, I'm making it one in this case.  She is scheduled for a lumpectomy tomorrow.  So, that's a good sign.  And her surgeon said it's the kind that responds well to hormones, so that's good as far as after treatment goes.  And it did not get into any lymph nodes.  We all feel positive that this won't be that big of a deal, really.  Just a small amount of time that was uncomfortable (she had a bunch of biopsies and an MRI) and a bit scary.  As long as that time stays small, all is good!

And to end on a more positive note, I have two more funny Harlie stories for you.

The other day Harlie wanted to play on the iPad.  She signs and says "game" at the same time.  Tom told her no, and to go play with toys.  With electronics around all the time, the toys just lay around untouched more than we like.  So, Harlie was clearly disappointed and went and sat in the living room for a few minutes.  Then she said, "Daddy" and pointed to her Vest treatment machine.  He said, "Oh, you want your Vest treatment?"  This was surprising.  She never wants her treatment.  So, he was like hell yeah you can have your treatment and went and got her Vest on.  He said that the second that last buckle was buckled, she looked at him with a smirk and signed and said, "Game."

That little sneak!!!  She knows she can have her iPad while she's getting a vest treatment.  You should have seen Tom's face when he realized that he'd just been had by a seven year old!  We were so damn proud.  That girl is one smart cookie!  I realize that this behavior is something that most kids do and most parents aren't as thrilled.  But, you have a different appreciation for this kind of thinking when your kid doesn't learn to read before first grade. Or talk.  Or isn't pegged as talented and gifted at age five.

Then, the other night after I had tucked her in and went back downstairs (and JUST sat down, of course) her heated trach collar equipment started to alarm.  So, I had to go back up there to see what was the matter.  And the second I walked into her room, the alarm stopped and she sat up and said, "medicine."  So, she figured out how to get the machine to alarm, knowing that I would have to come up there.  She is something.

I have to tell you that for YEARS I have read about kids doing stuff like this (on the trach board and Facebook) and I have always wanted Harlie to be able to do that stuff, too.  Another proud moment.  Of course, as my dear friend Sarah said, cute at first, not so funny later on.  I suppose she's right about that.  But, my other kids can scream my name, or jump out of bed and come down and bug us.  This is just Harlie's way of doing that.  And she should have a way, too.

Well, that's it for now.  More later!

Much love,
Christy xo


Tuesday, February 25, 2014

Exciting language progress!

I have so much I want to blog about!  I feel like everything is getting clogged in my brain.  Things have been so crazy.  But, mostly in a good way, so that's great!  It's just a little overwhelming.  But, there some super exciting things happening and I can't wait to be able to tell you more about it in detail - soon!

First, I've been wanting to share some good things about Harlie.  She is still on home bound for her schooling.  I wish I could give her more.  I would pay good money if I could hire an additional teacher to come to our house and spend an hour a day with her.  Her vocabulary is exploding and every day it seems that I can understand more and more of what she is saying.  Yes, speaking!  

Here are a few examples:

1.  One day a few weeks ago, she brought me a toy and said, "Fix, please." So, I took it and in my efforts to jam it back together I hit my hand on the hard plastic.  I said, "Ouch!" and she looked at me and SAID, "Wha happen?"  (she can't enunciate a lot of sounds).  The amazing thing is that she asked me a question (rare event) and that she knew the word "happened."  Holy cow.  She's hearing words not being directly taught to her and she's learning what they mean, and how to use them.  YAY!!!  I was so shocked that I started laughing and crying at the same time and I completely forgot to answer her question!!! ACK!  Huge moment, anyway and one I will re-live over and over.  It's the little things in life.  The little things that mean nothing to most and mean everything to few.

2.  I hate that I have to preface this next one with this.. but such is life.  Sometimes the dog has an accident in the house.  As they say, shit happens.  In this case, it wasn't the dog's fault (if Tom reads this he is thinking it never is) because a certain someone (not me) gave him a bone for his second birthday (Feb. 5th, just in case you want to mark your calendars) and it didn't agree with him. Anyway... so Tom got home from work and Harlie was upstairs.  She heard him come in the house (love that fact as well) and she went to the top of the stairs and yelled (another cool fact), "Daddy, Rooney pooped in my room!"

I get that you might not understand why that's such a big deal.  But, that is a full sentence, my friends.  A full sentence, with SIX words, that wasn't prompted - AT ALL.  And, she said in and my, words that she often skips because they just aren't that important, so probably not worth the effort. Huge.  Really, really huge.

3.  We have a nursing supervisor that comes out to our house every month to go over Harlie's case (since they provide her home health nurses).  Well, we got a new supervisor and it was her first visit with us.  She was sitting at our kitchen table while I went into my office to get Harlie's chart.  During that time, Harlie walked into the kitchen.  I guess she wanted to see who was sitting there.  Anyway, I heard the supervisor say, "Hi Harlie!" she introduced herself and then asked her how she was and Harlie said, "Good." Then she asked, "Are your nurses taking good care of you, Harlie?"  And Harlie said, "Yea."  Then she said, "You like them?"  And Harlie said, "Yea" and then showed her her toenails since they were painted.  And then I walked back in the room.  In shock.  She just had a "conversation" with someone else, with no help from me and she understood Harlie.  Granted, not a ton of words were spoken.  But, Harlie responded to her questions in an appropriate amount of time, without having to be asked more than once!  This is amazing progress!

4.  One day she told me that the step stool was dirty.  I didn't know she knew the words step stool. 

5.  The other night I said, "Let's go brush your teeth." And she said, "I already did it."  She said the word already.  Another word I had no idea she knew.  Amazing!!!  That girl never forgets to brush her teeth (nor puts up a fight about it).  She's the best.  She also asked me, "Where's the soap?"  I had never heard her say soap before.

6.  The other day she signed and spoke (at the same time, which I've wanted her to do forever) "It stop raining."  What's particularly amazing about that is that she is starting to share her observations (like telling me the step stool was dirty, or that the dog is dirty, etc.).  That's a huge development from the basic I want, I need language.  And she's starting to do it a lot more often now with books, movies and TV shows.  Huge.

7.  Of course, this doesn't mean we can always understand her.  There are more times than not when we simply don't know what she's saying.  It's still heartbreaking every time.  Especially when I know she's trying to tell me something specific.  Ugh!  This was one of those times... the other night I was putting her to bed.  After I got her pulse ox on and her trach collar with the humidifier on and all tucked in, she said ... "I want _______."  So I asked her to repeat it.  Which she did.  And it sounded the exact same.  But, I couldn't understand.  This went back and forth a few times.  I grabbed her communication device and asked her to use that.  She sat up and went to the "beverages" screen.  She scanned the page, didn't find what she was looking for, backed out and tried the "kitchen" screen.  She scanned that one and again, didn't find what she was looking for.  So she put it down and looked at me.  Then said the word again.

So, now I know it has something to do with her drinking it, but I know it's not water or juice or milk.  Which is strange because there's nothing else to choose from.  So, I said, "Can you show me?"  And she got out of bed, walked over to her trash can, looked in it and pulled out an empty medicine bottle.  She held it up, looked at me, then said, "medicine."  That is what she was saying!

A few nights prior to this, Tom told me that Harlie took her Enalapril by mouth.  Which is weird, but good.  So, he had been giving it to her at night for a few nights.  He wasn't home that night.  The funniest thing is that the bottle was in her trash at all.  It's one that you have to keep in the refrigerator.  The prior night, it only had one more dose left.  So, instead of measuring it out in a syringe and carrying up just the syringe, Tom just took the whole bottle and poured it upstairs.  Then, threw the bottle in her trash.  She remembered that he threw it away.

Honestly, I find so many amazing things about this whole interaction.  She is so incredibly patient with us when we don't understand her.  She never gets frustrated with us.  She seems to sympathize with us that we don't know what she's saying - but that we are trying so hard!  And she was teaching me by holding the bottle and saying "medicine" again.  Now I know what medicine sounds like.

We have a long way to go with her speech, but talk about progress!  And this is with her not being in school since before Thanksgiving!  It's possible she's exposed to more language here.  She's not working so hard to have to listen.  There are less distractions.  And she's not wearing herself out physically just to be at school.  I'm so comforted by all of this.  Making the decision to put her on home bound was NOT an easy one.  And despite her progress, it still doesn't sit well with me.  If I could wave a magic wand... I would want her healthy enough to be at school like kids her age should be.  I wish that doing what is best for our children always felt good.  But, it doesn't.  Too bad more parents don't realize that.  Sometimes doing what's best for them, hurts us.  God knows I've learned that many times over.

Anyway, we have to hold on to what's good, because not everything is.  I still have her cardiac situation weighing heavy on my mind (her doc appointment is Thursday!) and we have moments that are difficult.  A few weekends ago was the Girl Scout Father/Daughter dance.  I really didn't put much thought into it, because I wasn't sure if I would send her.  I didn't even tell her about it, just in case we decided not.  But, in the end, I was curious to see if her recent progress would bleed into this dance.  It didn't.

But, I asked her if she remembered the Father/Daughter dance from last year and she said, "yea" and I asked if she wanted to go again.  She said, "yea."  So I grabbed the same dress and shoes she wore last year (yes, they both still fit) and off they went.

This is the third year Harlie and Tom have gone.  It has been difficult for Tom each year.  Harlie doesn't behave like girls her age.  She doesn't care about the same things.  In fact, she doesn't appear to really care about anything there.  The music is too loud for her.  And I think the high pitch of the girls' squealing and screaming doesn't help.  There's a lot of movement (which I think she tries to avoid being around for fear of being knocked over).  And she isn't excited to see her friends or their dresses, etc. like other girls are with each other.  I guess she's just not there yet.  But, it can be sad for him to see her compared to them in that moment.  As he said when he got home, he sees what she would be like, if things were different.  Don't get me wrong, we love her for who she is - and she is a lot of person in that little body!  But what we wouldn't give to have her be a healthy little girl running around excited to see her friends and dance to One Direction or Taylor Swift.

He also said that the other dads were talking about how they took their daughters out to dinner first, before the dance.  As much as you can substitute and try to make up for, some things just hurt.  It's that simple.  Some things just hurt.  And it will always be this way.  You just have to learn to live with the pain.  And try to remember the things that are good and that bring you joy.  And after that night, I told him to remember all that she is communicating.  All the things she can do.  She is an amazing, wonderful little girl.  I mean, look at this sweet, happy face...




I hope Tom doesn't mind me sharing this... but when he got home, Brandy and I were anxious to see how it went.  We were so hopeful that it was better than last year.  But, Tom said that every year he cries when he's there.  I teared up instantly when he said that.  And later, Brandy said she had to go into the other room, because she was crying, too.  


There are so many difficult things about being a parent of a child with special needs.  Living with the grief of what is lost never gets easier.  It never goes away.  And it's coupled with the guilt that in some ways we have it better than other parents who are living with different losses. Children who can't do as much, or children that have passed away (God love those moms and dads).

I know that I will never be able to make those feelings go away.  Not for us, and not for our special friends.  So I have to focus on what is good and be thankful.  I will not take our blessings for granted.

And after it's all said and done, we've lived another day.  Happy.

Whew! This turned out to be a longer post than I originally intended.  And I have more to tell you.  But, it will have to wait.

Much love!
Christy xo

Friday, February 14, 2014

Snow Day!

First, I want to say thank you to those who still check this blog for updates.  I really feel like I've been letting you down lately.  It's just been such a rough couple of months.  Time seems to evaporate so quickly.  And the kids have barely been to school since winter break in December.  It's pretty much impossible for me to accomplish anything with them around.

Anyway, I'll start with something kinda quick, to get me back into things...

It snowed in Richmond.  Again.  And again, we had more snow days - with no school.  This time was the first time that most people didn't work.  So, it was really fun to have Tom around.  And our lovely friend Dale came over to hang out.  She got us motivated to go sledding.  Thank you so much Dale!

And thank you to everyone who gave us winter hand-me-downs!  We could never have pulled this off without you!  I think everything the kids are wearing were given to us!

Harlie was happy to be out.  I was SHOCKED that she wanted to go sledding.  We took her off the oxygen to go down.  The walk up required a shot of it when we got to the top.  So, Tom carried her up the rest of the time.  We ran into a bunch of neighbors at "the Rivers Edge hill."  We had a blast!

Happy Harlie!

Me and Rooney.  He's never far from me.

Me and Cooper about to go down the hill.
Rooney might be a little jealous.

Cooper and Murphy.
The snow was really coming down!

Me and Lindsay.

Me and Dale.

Being a kid.


Heavy snow!

Dale and Harlie.

Dale and me.

Me and Harlie.  And Rooney, of course.

Tom and Harlie with her hands up!

Me and Tom.
We had so much fun!

video

video

Harlie even went down solo once!  After a little while, she was done.  So, she sat in the truck with Tom's phone (and her oxygen) and took off most of her clothes.  Kids are so funny.

We really had so much fun.  And I am so thrilled that Harlie was a part of it.  I try not to think about the future too much - but I do really hope that one day, she can come off that oxygen.

Tom just took the boys to Wintergreen to go tubing.  Maybe we'll have to see if we can pull off taking Harlie.  I think it's pretty clear that she would love it.  I just don't know how to work the logistics of the oxygen.  I'll have to work on that...

Today has been another lazy, snow day with the kids home.  But, Cooper made my day.  Harlie told me (signed and tried to verbalize) that Rooney was dirty and needed a bath.  When I went to look at him, it appears that he's been colored on with a marker.

Me:  Cooper, did you draw on the dog?
Cooper:  Not today!

I have been laughing about that all day.  And he said it with pride, too.  Too funny!

More soon!

Much love,
Christy xo

Wednesday, January 29, 2014

Arizona

Another long silence...  In my defense, the kids have only had ONE school day since January 17th!  Crazy snow days.  I wish I could say I've been having fun with the kids.  But I would be lying.  Honestly, I don't have a lot of energy left over for "fun" with the kids.  And the boys want to go out and play and Harlie doesn't (and probably shouldn't).

Here are the photos I took during the brief eight minute span that Harlie spent outside during our first snow last week.  Seriously, eight minutes and she was done.  I could barely get her to stay still for the last photo.

Cooper

Cooper "sledding" down our driveway.

Rooney.  He eats the snow.

Cooper, Harlie and Murphy.

Yes, the kids were out of school for FOUR days for this snow "storm."  You can still see the grass!  Too funny.

We got more snow last night (Tuesday) and they were out today and they are going to be out tomorrow.  All the excitement of snow days are gone.  When I told Murphy he was like, "Oh, okay."  The first night we were like, "Hey! Guess what you guys have tomorrow...." asked in an excited, high pitched, tone of voice.  Now it's, "Hey, no school again tomorrow."  Told in a monotone, someone kill me now, tone of voice.

I have more updates on our day to day life I still need to write about.  I've been struggling with what to do with Harlie, medically speaking and what to do with her schooling.  But I think I am finally getting somewhere.  I'll have to save that for another post.

I started working a part-time job.  And trust me when I say PART TIME.  I am taking that term to a whole new level.  Especially with all of these freaking snow days.  Luckily, my boss is very flexible and understanding.  Thanks Bill! (He's Bill Jeffries, who is the creator of The Harlie Crew you see on the left side of my blog.)



But, for now I want to write about my trip to Arizona to see my friend, Ann and attend Jack's celebration of life service.

I left on Thursday the 16th.  Somehow we managed to all arrive around the same time.  I met my friends Sarah and Susan (from the pictures from my last post) at the airport.  We rented a car and drove to Ann's house.  I've seen pictures of her house on her blog for years.  So, I felt comfortable in her home instantly.  We all went to lunch, including another friend of Ann's (Erin) who lives there.  Coincidentally, Erin's daughter had a trach in the past (I think that's how they met).  After our late lunch, we hung out at Ann's house in the backyard by the fire.  We got to spend a lot of good, quality time together, which was great.  Then we (Susan, Sarah and I) went and checked in our hotel.

It's a little bit of a challenge to get used to the time change.  So, I woke up earlier than the girls.  So I went for a run.  I was a little nervous because I only packed a pair of running shorts, a tank and a visor.  When I looked at the weather from home it seemed like it was in the 70s during the day and cold at night.  Well, I checked the weather on my phone and it said 36!  Ugh!  But, once I got out there in the sun, it really was great.  It was perfect running weather.  Despite traveling the day before and drinking the night before, I had a great four mile run!  Even though it was a day early, that was my run for Meg Menzies.  Jack's service was on Saturday, so I knew I couldn't run that day.


My scenery during my run in Chandler, Arizona.  
On Friday afternoon there was a memorial hike for Jack.  We got brunch and hung out until it was time for the hike.

Sarah, Susan and me.

Then we hit the trail.







We stopped for a break here and got in a circle.  We took turns telling each other who we were, how we knew Ann and Jack, and shared some thoughts or memories of Jack.


It was an emotional time for all of us.  Pretty amazing to hear how much Jack affected those who knew him and even those who didn't.  There aren't a lot of people in this world that can say that they never walked, talked or moved purposefully, yet did so much for so many people.  I felt so honored to be there and to have Jack in my heart.





The scenery was beautiful.  Pictures just don't do it justice.  Especially when I'm taking them.  Sarah took the sunset one.  Not me.

After the hike, we went to Erin's parents house where they hosted a wonderful mexican dinner for all of us.  Their house is gorgeous and has a beautiful backyard with a pool.  It is the perfect entertaining house!  I wish I had taken some pictures!  Ugh.  Anyway, someone at least got this picture.

Standing: Whitney, Sandra and Ann.
Sitting:  Me, Sarah, Pat (Erin's mom), Erin, Susan and Carrie
All of us (except Pat) have or had a trached child.  And me, Sarah and Susan are the only ones whose children are still trached.  I can't tell you how awesome it was to be surrounded by trach moms.  We were instant friends, or as Ann affectionately refers to us, sorority sisters.

Saturday was Jack's celebration of life.  It was difficult, and beautiful.  One thing I've learned about me is that I am not really good in serious, somber situations.  I seek out humor to get me through.  And sometimes that can appear as inappropriate from someone who doesn't know me.  Once we sat down, I was a little overcome with emotion and to seek humor (albeit in a sick way) I said to Sarah, "When it's my turn, I want you to come."  And then Sarah started to cry.  I told her I was sorry, I didn't mean to make her cry.  She said it's sad that I have to have those thoughts.  (But, when you're told that your unborn child has a 5% chance of survival, has heart defects, lung defects and airway issues, it's unavoidable.)  Then she told me she would play the piano and sing.  And I said, "Thanks!  That would be awesome!"  And we both smiled.  

I know that sounds totally weird.  But, that's just the way things are when you live a weird life.  I really just try to go with the flow, you know?

The service was really beautiful - as far as those things go.  And it was definitely difficult for a lot of us.  Clearly, I can visualize myself in Ann's shoes.  And that didn't help.  I think it's safe to say that most cried on and off throughout.

A lot of people spoke and they all did a great job.  Jack's sister spoke and was funny and adorable and so sad at the same time.  I think a couple of his cousins spoke and they did a great job, too.  One of Jack's doctor's from years ago came to attend the service from Los Angeles. He spoke as well.  As the parent of a special needs child who sees a lot of docs often, I was appreciative of him caring enough about Jack and Ann to be there.  Some of these docs mean a lot to us and our kids.  And we can get attached.  I love that he felt the same way towards them.  And Ann and Mark spoke. I have so much admiration for them.  They did great and wrote beautiful pieces.

Ann had stones for us to take to remind us of Jack.


I took an "Onward" one.

After the service, we walked to the graveside service.  I was okay until I saw them hold his ashes.  I couldn't take it anymore.  And I wasn't alone.  It was such a heartbreaking sight.  It's so not right.

At the end of that service we sang When Irish Eyes are Smiling.  And I got to hear Sarah sing - and she has a beautiful voice!

After that, we went back to Ann's house for a reception.  Is that what you call it?  Anyway, they had great food and a wonderful set up in the backyard with heaters.  It gets cold there at night!  But I love how they still sit outside.  It's great.


We ended up eating two meals there and hanging out, talking, laughing and enjoying our time together.  What a wonderful group of trach moms!!!

Sorority Sisters.
From left to right: Sandra (Texas), Whitney (Colorado),
Erin (Arizona), me (Virginia), Ann,
Carrie (New Jersey), Sarah (California),
Jenny (Missouri) and Susan (Washington).
Ann is amazing and I think it's obvious how much she means to all of us.  Every single person in that picture will tell you that she was instrumental in our survival of this life as a trach mom.  What a gift to all of us.

The next day, Sunday, Ann had brunch for all of us who traveled from out of town.  I meant it when I said we got some good, quality time together.  Ann's family did an awesome job with the food - it was all so good!  And it was a beautiful spread, too!  We really felt special being there.

Then we gave Ann a break from us.  A few of us went back to our room and hung out.  We had the Patriots vs. Denver game on and I got to watch the Patriots lose.  Awesome.

By dinner most had left to go back home.  So it was just me, Susan, Sarah and Jenny.  We went to dinner and got these in our fortune cookies.  I can't remember what Susan's was.

Sarah's, for Jack, of course.

Weird, considering I was about to take a flight East!

This was Jenny's - and she had never
met the three of us before this trip.  
Weird.  

Then we went back to Ann's to have one last drink, and say goodbye.  :-(

Then Sarah and Susan drove me back to the airport (my flight was at 11:45pm).  And we had to say goodbye.  :-(


So sad.  

Despite the difficulty of the situation, it was wonderful to spend time together and meet more of our "sorority sisters."  Good people.  Wonderful friends.  I'm truly blessed.  

Much love,
Christy xo