Monday, January 28, 2013

Harlie's off the O2!

Lots to update...

First and foremost - Harlie is WELL again!  Woo Hoo!!  We went to see her pulmonologist on Thursday.  He said that her culture (that they took when she was in the ER last week) came back positive with pseudomonas.  They guessed that was the case, which is why they put her on the extra antibiotics.  So, at least the GI issues weren't for nothing.  Anyway, he said he didn't think it was pneumonia - he thought her low oxygen saturations were due to the mucus plugging that the pseudomonas caused.  Whoever read her x-rays that night in the ER might have only looked at the x-ray taken, without comparing it to her previous images they have in the computer.  I think due to her lobectomy, her right lung always looks a little hazy, which can be misread if you don't know Harlie's history.  Regardless, I'm so happy to say that she's off the supplemental oxygen and that she's her happy, spunky, energetic self again!

Harlie's next surgery (when am I going to stop saying that?!?!?) is February 12th.  It is her second stage of her BAHA placement (or whatever you call it).  The surgeon will place the abutement (the thing that holds her hearing aid on her head).  In the image below, the processor (hearing aid) is the black box to the left, the abutement is the round thing in the middle, and the titanium piece is already in her skull, under the skin.
The abutement is screwed into the titanium and the surgeon will destroy (?) the hair follicles around the area, so it stays clear and doesn't interfere with the BAHA.  After this surgery, we wait six weeks for it to heal before we can use it.  I can't wait!!!  She's been SO good with her soft band BAHA, so I can't even complain about that.  It's not a fight, she doesn't take it off, in fact, she asks for it.  But, it will be nice for her not to wear the head band anymore - fashion-wise, of course. ;-)

Anyway, I was a little worried that her lungs would need more time to heal before she could go under anesthesia (especially since we thought it was pneumonia).  So, I asked her doc about that when we were there on Thursday and he said she's good to go.  Woo Hoo!!

I have more surgery news to tell you about, but I'm going to have to save it for later... it's going to have to be it's own post and this one is already going to be too long.

So, back to Thursday again, I asked Harlie if she wanted to go back to school and she immediately, and excitedly said "yes."  So, Friday, she FINALLY returned to school.  Happy faces all around (especially MINE!).


And for her first day back in forever, she was fairly cooperative and willing to work.  Her teachers said she had a great day and they were all so happy to see her back.

Speaking of her teachers...

I cannot say enough good things about her team this year.  Seriously, I am SO incredibly grateful for all the educators that care about Harlie.  She is not an easy child to teach - and they all work so hard to find what works for her.

A few weeks ago, we had a meeting about her communication.  To try to summarize, we were trying to figure out what we wanted to focus on as far as how she communicates to us.  So far, we've really been accepting whatever way she wanted to communicate, whether it be sign, verbalizations, or her communication device (talker).  And, that just wasn't working.  The main problem is that her sign and verbalizations are just not able to keep up with her mind.  So, it's getting more difficult to test her or assess her at school, without her being able to communicate what she knows.  And that's clearly a problem - that will only get worse over time.

So, we all agreed that she CAN use the communication device.  It does take a lot of time, but she will get quicker and more efficient after lots of practice.  When it snowed, she used the device to say, "I want sled."  We haven't used the word "sled" in a long time.  So, either she remembered where it was from a long time ago, or she knew how to find it.  Either way, it proves that we need to commit to this device and really reinforce its use - all the time.  It's not easy, though.  Often times, we know what she wants without having to use it, but that will not help us down the road.  We have to teach her that using the device is the standard.  And she has a lot of people in her life.  And we all need to be on board.  And that's not so easy, either.

The person who got us the device (Rachel) a couple of years ago has been working on getting someone from the company who makes the device (Prentke Romich) to come to the school and do a training session.  That hasn't been easy, either.  So, she thought of another idea, and contacted a speech therapist within our county who knows Harlie's device really well, and knows how to program it.  And she was willing to come and show us a few things to make the device less intimidating and more usable for us.   Can you imagine having to organize all your vocabulary on paper?  How would you do it?

So, we had that training session today.  We spent two and a half hours going over stuff.  I know I've been saying "it's not easy" a lot, but, it's not easy to know where to add new words.  Tom took Harlie to the car wash this weekend and I wanted to add that button.  But where does it belong?  Under the washing category, the car category?  I ended up putting under cars.  But then Rachel suggested putting under "places."  Of course!!!  I forgot all about that category.  So, I need to change that.  And I need to spend more time studying the device myself, too.

It was a very beneficial session.  And I just cannot say enough great things about everyone that was in that room.  So many times I am reminded just how unique she is (like when someone asks a question about how to teach her something, and no one really knows the answer).  In a room full of special education teachers and/or therapists, that's a little scary.  So, this is not easy work for them.  But, despite that, they were all there, taking their valuable time to learn/teach something that will help Harlie communicate.  I want to hear what she has to say without me giving her the words.  They are helping her to get there.  What a gift!!!  How can I ever tell them how much their work means to me, to Harlie to our family?  We are so, so lucky to have them believe in Harlie and her potential.

It was also comforting to hear them say that this device is really only temporary.  And that she will be a reader and writer one day.  And when she can do that, she will type what she wants to say, which will be a different device.  Wow.  Crazy to think about that.  But, crazy good, I guess.  Well, aside from actually talking.  That would be my first choice.  But, I would totally take her typing away, like a typical teenager texting.

Another exciting development as far as her education goes is that I hired her teacher of the deaf from a couple of years ago to work with her privately.  She is the one that thought of the My Name is Harlie book and helped me write it.  She left the county and started her own company.  The best part is that she will come to our house once a week to work with Harlie.  And she already knows her current team, so they can communicate what they are working on in school so she can concentrate on that, too.  And she came to the meeting today, too, so she can incorporate the device into her sessions, too.  How awesome is that?  Just can't say it enough, I am so appreciative of all their hard work and dedication.

Okay, that's it for tonight.  I've already started working on my next post - which I'll hopefully have up tomorrow.

Thanks for reading!
~Christy xo

Tuesday, January 22, 2013

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

Saturday, January 12, 2013

ER visit

Thursday

Harlie seemed totally fine (well, except for that little pesky O2 requirement), so off to school she went.  Seriously, I was thinking any minute now, she's not going to need it.  

After everyone was where they were supposed to be, I went to my Adrenaline class.  It was great.  Then I came home and sent some e-mails.  I e-mailed Harlie's pulmonologist.  I just wanted to let him know what was going on and get his opinion.  I really couldn't quite understand his response, to be honest.  I really like her pulm, he's great and very personable.  And when we see him in the clinic, he always explains things in a way that I can understand.  However, this is just one sentence from his response...

There could also be more shunting going on with blood bypassing the lung across her cardiac defect from more resistance to blood flow through the lungs by the edema.  

Got it?  

However, this I understood easily...


Lastly, she has almost half the lung reserve that she needs and the illness (and healing) will create more oxygen demand particularly with any exercise.

Because he mentioned "shunting" and "heart defect", I went on ahead and sent an e-mail to her local cardiologist (just to be on the safe side).  He mentioned pleural effusions asked if she's had a chest x-ray.  Um, no.  We were really trying to avoid that.  But, maybe we should consider that.  Tomorrow, of course.  

At some point during the day Terri sent me a text to tell me that she was up to two liters on her tank, to keep her sats in the 80s.  That's kinda high.  For Harlie, at least.  Especially on day three of ABs (antibiotics).  Hmmm...

When they got home from school Terri told me that the tank at school was pretty much empty.  

It was after 2pm now.  Considering she will most likely need more tanks for school on Friday, I needed to get on that and fast.  So, I immediately called our supply company and asked about getting more tanks.  This was a nightmare, but let me try to make it more simple for you...

We had one "E" tank - which is a larger tank that goes in a rolling cart (which was empty and still at school).  

We also had two "D" tanks - which are smaller tanks that go in a shoulder strap bag thing (one was almost empty and one was full).  

The E tank was staying at school and Terri was using the D tank to get her to and from school.  That way she didn't have to carry the bigger tank on the bus.  

Apparently, on two liters of O2, the E tank will last four hours, and the D tank will last two hours.  

So, we didn't have enough tanks to get us through the next day (Friday).  

The girl at the supply company told me they would only switch tanks out.  Meaning we had to give them an empty tank when they gave us a new tank.  But the empty one was at school.  So, logistically, how do I make that work?  

Well, I hate the small details of logistics.  So, right there my brain wanted to stop working.  But, don't most people own two propane tanks for a grill?  So when one goes empty, you switch it out for a new one then you have time to exchange the empty for a new one, right? So, how the heck am I supposed to switch out one E tank?  It seemed to me that I needed at least one more E tank.  

Plus, I needed the E tank that day so I could take it to school on Friday.  

After 45 minutes, and three people later (the second person finally transferred me to a respiratory therapist who was a bit more reasonable and understanding of the situation) I finally got an order for two more E tanks in exchange for one D tank.  That left me with two full E tanks, one empty E tank, and one full D tank.  And they delivered them that afternoon.  

Terri stayed late for me that afternoon because I was on the phone so long.  And during that 45 minutes, Murphy got home from school and wanted to talk to me about his day (which is very rare).  But, there was no way I could talk to him right then.  So, I had to shoo him away to take care of this stuff for Harlie.  Ugh.  Stuff like that just makes me feel terrible.  I know there's no way around it sometimes, but that doesn't make me feel any better.

Friday

Harlie went to school on the bus with Terri with a D tank.  We got Murphy off to school and Tom left a little early that morning.  I got Cooper ready and took him to school at 8:30.  I left there and went to Harlie's school to deliver one of the new E tanks that was delivered the afternoon before.  

I must say that it felt super weird to be carrying in an oxygen tank to school.  When you push the buzzer to get in the school, they now ask how they can help you.  So, I said, "I'm Harlie's mom delivering oxygen."  I'd rather be delivering cookies.  

So, we switched out the E tanks.  And when we opened the new tank - it's not full.  Seriously?  Ugh.  That's when I wonder why I didn't think about the supply company delivering the tanks to school instead of to my house.  Wouldn't that be way easier?

I tell Terri to call me when it starts to get a little low and I will have to come back and pick them up.  Because I just love driving back and forth to her school.  

I left there and went to the gym.  I signed up for the 9:30 TRX class and got the last spot.  On my way there, I called her pediatrician.  I asked if her current ABs treat pleural effusions.  She said she'd call me back.  

Just as the class was starting, my phone rings.  The nurse said that her doc wants her to have chest x-rays.  I can't believe my denial, but I actually asked if I needed to do it now or if I could wait till after school.  She paused and fumbled over her words a bit (probably because she was shocked that I would ask such a ridiculous question).  I said, "Never mind, of course I should take her now."  And hung up.  

Then I went and did the TRX class.  It was hard - not just the work of the class (because TRX is really hard) but my head wasn't all together for a little while.  But, I felt a lot better after.  Then I ran a quick mile on the treadmill and I felt much better.  

Then I went home to eat breakfast and shower.  Because I'm sorry, but I am NOT going to the hospital looking all a shambles in my work out clothes.  No way.  I can't help but think if I look somewhat put together, then I will be taken more seriously.  

I also called our supply company.  For one, I wanted to ask them about getting a portable oxygen concentrator so we wouldn't have to worry about tanks.  Because they are proving to be a royal PIA.  I got a "no."  But, if this turns out to be a chronic problem, I'll work on that.  I also asked her about delivering to school.  She said they don't like to do that because they are afraid they (the tanks) will get lost.  Seems like an easy problem to overcome considering Harlie is the only child in the school with oxygen tanks.  But, that will have to be a fight for another day.  I got other things to deal with right now.  So, then I ask about delivering tanks during the weekend.  She answered, "Only if it's an emergency."  I replied, "but... it's oxygen."  

Am I missing something?  Isn't needing oxygen, kind of important?  Whatever.  Moving on... I ordered more tanks and asked that they be delivered as late as possible in the day.  Because I didn't know when I'd be home.  But, I did think ahead a bit, and brought in the empty tank that I picked up from school earlier in the morning.  

Unfortunately, it's now close to noon.  My, how times flies!  

I realize that I don't know where to take her for the x-rays.  I mean, I know where it is, but I don't know if her doc has to call ahead and order it.  I can't just walk in there and ask for an x-ray.  So, I called her doc again.  I get the receptionist who tells me that they are all busy and they are going to have to call me back.  I can tell she doesn't know how I am or why I'm calling.  And they close the office at noon for their lunch hour.  So, I really need to talk to someone before noon.  

I wait till just a few minutes before, and call again.  Her doc gets on the phone and tells me to go to the ER.  

Well, now I have to feed and walk the dog.  

Then it dawned on me that I have to have the boys taken care of because I have no idea how long I'm going to be gone.  So, I had to make some phone calls.  Of course my friend Bethany (who's got my back - thank you very much!) comes to my rescue and picks up Cooper and keeps him for the day.  I was going to ease her burden by sending Murphy to another neighbor.  But I couldn't reach her.  So, I had to call Bethany again, and ask her if Murphy could ride his bike to her house after school.  Of course!  So, I had to send an e-mail to his teacher asking her to tell Murphy to go to her house instead of coming home.  

I also called my niece Maggie, who said she could come over around 3pm to relieve Bethany of the boys.  Maggie said she could stay until 5pm (then she had to go to work).  Then Tom would come home.  My mom has the flu, otherwise I would have just had her come over.  

Okay, so I got home from the gym at 10:45.  By the time I did all that stuff, it was a little after 1pm.  Now I realize that I have to pick up Harlie and Terri, and then bring Terri back to my house because she needs to get her car.  There's no way she can go to the hospital with me.  Who knows how long I'd be?  

So, I finally got to the ER at 2pm.  OMG.  I had no idea it was going to take that long to do all that stuff.  

The ER is packed and with Harlie's chair and all her stuff, we were kind of a wide load.  There was no seating for the both of us.  So, I stood up most of the time.  I can't remember how long we had to wait, but it was a good long while.  I've never had to wait at the ER with her.  Ever.  And I had to ask them for an O2 tank, because there was no way my small D tank was going to last us through all this waiting, and then to get us back home.  

I got to see a friendly, familiar face - a nurse that we met through the Steelers club.  We've seen her many times in the ER.  So, that was nice.  

Once we got back into a room, things went pretty quickly, all things considered.  We saw two doctors that have both seen Harlie before.  Went over everything and got chest x-rays.  

She was very playful (and didn't look very sick).  


But then a nurse came in to start an IV (they wanted some blood work and wanted a line for IV ABs, if necessary).  Harlie immediately started to cry.  Break. My. Heart.  I tried to prepare the nurse for the fight Harlie was going to put up.  I told her that nothing I do or say helps Harlie.  I sat down on the bed and put Harlie in my lap.  Then I bear hugged her the best I could.  I should have told the nurse to get some help.  But, I just wasn't thinking, I guess.  

Thank God this lady knew what she was doing.  She got it on the first try!  And that's saying something when you factor in how much Harlie fights and moves.  But, once she got it in, Harlie still wouldn't stop moving.  And by now we are laying in a very awkward, uncomfortable position.  Harlie is purple from all the crying and fighting, her oxygen tubing came disconnected, the alarms are buzzing and her sats are in the tank.  The nurse doesn't want to loose this IV, so she calls for help.

Whew!  After a few more minutes, they were done, and we could leave her alone for a bit.  She was wiped out after that!  


Then the doc came in to tell me that her x-rays showed some pneumonia and/or atelectasis (collapsed lung) on the right side.  They want her to stay on the ABs she's already on, but they want to add a med.  They said the med can be hard to find, so they were going to give her first dose while we were there, through her IV.  

They started that at 7pm and said it takes an hour to run.  Thank goodness I remembered to throw some granola bars and an apple in my bag!  The last time I ate was breakfast.  So, I was hungry.  

I was also really, really tired.  And even though I've done it so many times before, the thought of packing her up, carrying all the bags and stuff and getting her to the car, and home, made me exhausted.  It felt like the car was miles away.  

So, I called my sister, Sandy.  I knew my niece, Jordan, was still home from college, so I was hoping they could help me.  I felt so wimpy asking for such a crazy thing.  But I really couldn't help it.  

I asked her if there was any way they could work out going to my house, leaving someone there to watch the boys and then have someone bring Tom to the hospital, so he could drive us home.  

How awesome is it that they were Johnny on the spot?  Sandy and Jordan were already together and out.  So they left there and drove straight to my house.  Sandy called her husband, Rick, and asked him to leave their house and drive to my house.  Jordan stayed  with the boys and Sandy and Rick drove Tom to MCV.  He got there right as we were getting the paperwork done for discharge.  

Awesome!  Thank you so much Sandy, Jordan and Rick!!!  

We left the hospital and went to the 24-hour CVS to get her prescription filled.  No luck.  They were out of it.  They called another pharmacy (the one that usually has everything but isn't so conveniently located) and they were out, too.  Tom called another one, still no luck.  They could order it, but it wouldn't get here until Monday.  So, we went home.  

I guess we got home close to 10pm.  Tom called the ER doc and told her about the meds.  She said she'd do some research and get back to us.  

We went to bed.  And the doc called us back Saturday morning.  

But, I'm going to have to stop there.  I still have more I want to tell you about, but it is super late and I'm running in the morning.  So, I need to get to sleep. 

More soon!
Thanks,
Christy xo 

Wednesday, January 9, 2013

Still on O2.

Harlie is feeling much better.  I kept her home from school on Tuesday and she fought the oxygen tubing all day.  She wanted to be free to play.  We gave her small breaks throughout the day.  And even though her sats were still pretty low when off the oxygen for a while, she really seemed fine.  So fine, in fact, that if I didn't have the equipment to see what her sats were, I wouldn't know anything was wrong.  Well, sometimes her nails were a little blue.  But, other than that, she really was fine.

So, after going back and forth with my thoughts for hours and hours - I asked her if she wanted to go to school and she said yes.  So, I let her decide.

She got up this morning with way less fuss than I expected considering this was her first day to wake up early - and considering she was sick.  She willingly got dressed and got ready for school and seemed totally happy to go.  I checked her sats before putting her on the bus and they were definitely still lower than her norm.  So, I started second-guessing myself.  I was thinking (okay, hoping) that maybe her being up and walking around would help get her sats up.  Although it probably works just the opposite.

We recently got a new battery powered, small, portable pulse ox, so I gave that to Terri to keep with her to check Harlie's sats throughout the day.  I thought to myself that she could at least go in the morning and if she had to come home, I'd just pick her up early (the morning school work is the most important).  So, I put her on the bus, signed "I love you" and watched her sign it back from the window and went in the house - totally second-guessing myself.  Like, my stomach was hurting.  I was really struggling with "is this my gut telling me something that I'm trying to ignore" or should I trust what I've learned "look at the patient and not the monitor?"  Thankfully, there is a fire station right next door to the school and knowing that help was just a few minutes away, made me feel better.

Ugh.

And another question - why are her sats still so low when she seems SO much better????  And her lungs sounded clear???  What gives?  I need to send an e-mail to her pulmonologist when I finish this post.

Tom took Cooper to school and that left me in the house ALONE for the first time in weeks.  Ahhhhh....  too bad I had to run off before I could enjoy it.  I went and met some friends for a run, which was great.  As soon as we were finished I checked my phone and I had a text from Terri saying that she was 81 - 82% on the bus, but 75 - 76% later on.  And when she was walking from her main class to her HI class (which is kinda far) she dipped into the low 70s.  She said that she could tell she was low by looking at her (which hasn't been the case so far) and so she made her stop in the hall to get a reading.  After that she said she wasn't going to let her walk anymore.  So, they were going to have lunch in the classroom so she didn't have to walk to the cafeteria.

Earlier I had called the school to find out if I could just bring an oxygen tank or if I had to have doctor's orders.  She said I needed orders.  So, after I got that text, I called her doc and asked for a script to have oxygen at school.  Then I went and picked up the script and went home to get the oxygen tanks.  I took two, one bigger one that goes in a cart with wheels and one small one that you carry on your shoulder.  I was thinking that it's probably safer to have the big one with the cart in school, so it doesn't get knocked down.  The one that you wear on your shoulder doesn't really stand up so great.

Then I took the tanks to school.  After talking with the school nurses (who were great about it) we decided we are going to leave the bigger tank with the cart at school from now on.  And Terri can carry the small one on the bus to and from school.

I was a little curious to see how Harlie would react to having to wear the oxygen at school considering she wanted it off at home.  She seemed to do okay.  She ate all her pureed peaches (so she MUST be feeling better).  I talked to her teachers and they all said she seemed fine and that they wouldn't know anything was amiss if we didn't tell them.  So, I left her at school.  I told Terri I would come back and get them if necessary.

While I was there, the students from another KG class returned from lunch and saw her sitting there with the oxygen tank.  They asked what it was.  And about five stayed right there, saying "hi" to her.  I was very happy to see her wave "hi" back every time.  That teacher said that they noticed that Harlie wasn't at school and they asked about her.  And that's not even her class!

Unfortunately, there was a new student today who started in Harlie's class on Monday.  Today was her first time seeing Harlie and she had a hard time.  I think she was scared of the suction machine and scared of the way her cough sounds.  I know she'll get used to it in time.  Harlie's teacher has a "My Name is Harlie" book in the class and she gave her that one to take home.  Hopefully that will help a little.  Apparently at one point during the day when the little girl was having a difficult time, her teacher asked the class if they thought Harlie was beautiful and they all said "yes!"  I don't remember exactly what happened, but it sounds like it was really cute.

Since I'm on the subject, I've been meaning to give you an update to something I wrote about right after school started.  There was a little boy in the class across from hers who asked Terri if Harlie was a monster.  Well, that little boy loves Harlie now!  They play during recess.  And the day that I took Harlie to school a while ago, he was walking in the hallway in front of her.  Of course, I had no idea who he was.  But, he looked behind him and saw Harlie and smiled.  He started slowing down so she could catch up to him.  They were both totally smiling at each other - like they were flirting!  It was so cute.  I asked him if he was her friend and he said yes.  I asked her the same, and she said yes.

So, while I don't exactly understand why someone would be afraid of her (does she really look that scary when you see her for the first time???) I am so, so comforted to know that her classmates quickly grow accustomed to her differences and see past them.  I'm sure this little girl will get used to her soon, too.  The wonderful thing is that Harlie seems completely unaware that some students struggle with her and her stuff.  She still smiles in the mirror and I am very thankful.

So, while I was occupied with the oxygen at Harlie's school, I lost track of time and was late getting home to get Cooper.  Today was Bethany's day to pick up the boys (we take turns since her son is in Cooper's class and we live just a few houses from each other).  Of course, she had lunch plans, so being the wonderfully flexible and helpful person she is, she took Cooper with her to the restaurant and I picked him up from there.

Cooper fell asleep on the way home and stayed asleep while I carried him upstairs to his bed (that RARELY happens).  By this time it was 1pm.  Then I fed and walked the dog.  Then I went home and made lunch for myself.  Whew!  It was a crazy day of running around.

Thank goodness for Kim - she came over at 4pm today and cut the kids' hair.  I am so super glad that she comes to our house so I don't have to take them.  And Cooper's hair was a mess!  He has so much hair it's unmanageable. Quite frankly, I was a little embarrassed that he went out to a restaurant.  Not to mention that he picked out his own clothes and got himself dressed with no help.  While it wasn't the worst outfit, it certainly wasn't what I would have picked out for him.  I'm seriously trying to let some things go, you know?  But, I can't handle how bad his hair looked today.  It's like it grows at different rates in different places.  It was really awful.  So, she buzzed him.  He looks much better now.

Oh, and yesterday I got a package from Godiva in the mail.  YUM!  It was brownies!!


I wish I could take better photos, but this will have to do.  They are absolutely delicious.  And I love that it comes as a big block and you slice it how you want it.  That's really good because small pieces have less calories.  Even if you eat lots of small pieces.  Isn't that awesome?  Thank you, Ann.  You are the best!  And you make me want to send awesome gifts to people who need a pick-me-up.  Thank you!

Well, that's it for now.  Hopefully her sats will be much higher tomorrow.  I'll certainly let you know!
Thanks!
Christy xo



Monday, January 7, 2013

On ABs

Unfortunately, Harlie has gotten worse.  I'm not too, too worried yet, but I'm keeping my eyes on her for sure!

Last night (Sunday night) we turned on the oxygen concentrator again.  I was up a few times, but it wasn't really that bad.

Except I had to get up around 3am to let the dog out.  While that happens very rarely, it was the second time in just a few days.  And when he went out, it didn't seem like he really had to go, it just didn't seem urgent.  And when he came back into the house, he immediately jumped in our bed.  So far, he still sleeps in his crate.  I wanted to make sure he was fully house trained before I let him out at night.  I let him hang out for a little bit, but then put him back in his own bed.  So, last night he did it again, and promptly headed for our bed.  Hmmmm.  I'm thinking he's a pretty smart dog.  I think he goes outside just so he can get in our bed.  Tom is pretty against him sleeping in our bed.  He claims that he already gets a very small portion of the bed.  If Rooney got in there, he would get even less.  Whatever.  That is simply not true.  I am not that big.  I couldn't possibly take up most of the bed.

Anyway, back to Harlie... so, I got her up and dressed and brought her downstairs.  I guess she'd been off the oxygen for about 10 minutes.  I was getting her settled on the couch when Terri came in.  We checked her sats and they were 72 to 73!!!  Holy cow!  That's even low for her (her baseline is high 80s/low 90s.)  So, back on oxygen she went.  She stayed on the couch for the whole day.  I called her pediatrician and got an appointment for the afternoon.

Throughout the day Terri would take away the oxygen and check her sats.  Every single time they plummeted immediately.  Ugh.

So, it was time to take her to her appointment and I went and got the portable oxygen tank.  Boy am I out of practice!!  I unlocked the tank and saw that it was almost full.  I gave it to Terri to hook up to Harlie.  But during all this, Harlie threw up all over her clothes.  Wow - it was just like old times!!!  I swear that always happened when we were in a hurry to get out of the house!  So, we had to change all of her clothes.  I was going to be late for sure.

So, we get her in the car.  I couldn't help but think back to when she was a baby and remember how hard it was.  And, for the record, she was a baby for like five years.  ;-)

I check in and Harlie looks just terrible.  I had to carry her in - along with my bag, the suction machine and the oxygen tank.  Our doctor's nurse is named Terri, as well.  And Terri said it has been a long time since I've seen her look so sick.  I'm thankful that it's been a while.

So, we get in the room and I'm telling her what's going on and why we're there, etc.  I mention that we need to give her three liters of oxygen at home to keep her numbers up.  So, I say, "Oh, I wonder what she's on right now.." and turn to check.  Oh no.  The regulator is OFF.  Oops.

I guess Terri thought I turned it on, and I thought she turned it on.  Boy we are out of practice!  So, I turned it on.  And she felt better.  Embarrassing!  Poor Harlie.

So, I guess that reminded Terri (the doc's nurse) of when she first met me.  I often wonder what people (who don't know me) think when see me with Harlie (or without sometimes!).  Terri said that she had just started there (I remember that) and Cooper was there for his two month well check.  But he was THREE months old.  She said that his hair stood straight up (totally true).  And that after meeting me (I just had Cooper, Harlie was not with us) she thought, "That mom does not look like the kind of mom that would be a month behind on infant checkups.  He's only three months old and she's already a month behind?  That poor neglected baby!"

She said it wasn't long after that that she met Harlie and then she thought, "Oh, he's good."

I bet I did look a little spacey.  An overly worried Mama, I am NOT.  Too funny!

Anyway, her doc had a listen to her lungs.  And while he said they sound clear, she is definitely working hard to breathe.  Sadly, it's really hard to notice that in this crazy house with the kids home and the TV on.  But, when it was quiet in his office, you could really see how labored her breathing was (and that was after I turned on the oxygen).  He put her on antibiotics.  So, we'll see what happens.

I haven't rescheduled her sleep study yet.  I'm going to give it a few more days.  You never know... she could bounce right back!

More soon!
Thanks!
~Christy

Sunday, January 6, 2013

Quick Update

Harlie is still sick.  Saturday night was rough.  Her sats were low.  Like 70s low.  So she went on supplemental oxygen.  And she was up coughing till about 3am.  :-(

I think she felt a little better today, because she played a little more.  But, by early evening, she was  sacked back on the couch - watching football of all things.  Which totally proves she felt like crap because she didn't want to move to go do something more interesting.  

She's sleeping comfortably now, back on oxygen for the night.  It's so nice to see her actually resting and not coughing.  Hopefully it will last most of the night.  

School starts back up tomorrow.  I am not sending her, though.  Total bummer.  I think I'm going to take her to the doctor to have him listen to her lungs.  I listened tonight, but I can't tell what I'm hearing.  But, I know it wasn't clear.  

Murphy is SO ready to get back to school.  I told him that makes all of us.  He's really excited to ride his new bike.  Tom took him for a bike ride today and took him to school and showed him how to use his new bike lock.  It's a cool lock - instead of a number combination, it's a word combination.  


He likes it.  

Well, I'm going to go watch the new Biggest Loser now.  Jillian is back.  Woohoo!  I love her.


I haven't watched the show in a couple of years.  I don't know why, because I really like it.  It's so inspiring.  

More later!  Thanks!
~Christy

Friday, January 4, 2013

Harlie is sick.

Harlie is definitely sick.  She is miserable.  I guess she has a cold.  I don't think it's anything more than that, yet.  Her sats are staying good - still high 80s to low 90s.  Wow, what a long way she's come.  It wasn't really that long ago that a simple cold would drop her sats drastically.  That's a comforting sign that her lungs are growing and that they're able to handle a little stress (despite the fact that she had two lung lobes removed at eight month's old).

The past two nights have been horrible.  Last night worse than the one before that.  On Wednesday night she had a terrible coughing spell that lasted about an hour.  So, I was up and down about 15 times in that hour.  Last night (Thursday night) was even worse.  Her coughing was spread out over the whole night.  I was up at least one or two times every hour.

I feel so bad for her, though.  You can see how awful she feels just by looking at her face.



After Terri left this afternoon, I really couldn't leave her side.  The second I left the living room (she was sacked out on the couch watching movies) she would start coughing and then call for me to come suction her.  She even used her communication device (the black thing in the photo) to say, "I need to be suctioned" all on her own with no prompting from me.

I know she can't help it, but I couldn't help but get annoyed.  All that freaking suctioning gets old!  Especially when half the time she really didn't need to be suctioned.  She was clearing it on her own, but for some reason she wanted to be suctioned.  I guess it must make her feel somewhat better, or she wouldn't have asked.  I don't know.

At any rate, going back to not being able to leave the room for a more than a few seconds is hard.  It took several trips into the laundry room before I could actually accomplish switching out the loads.  I took the boys to the gym with me this morning and when I got back, Terri said she couldn't make Harlie's bed because she would get up there and Harlie would need her again.  After a few trips up the stairs, she just waited for me to get home.  We had to change her bedding out because this morning there was some blood on her sheets.  I have no idea where it came from.  Her trach appeared to be clean.  There was nothing that I could see in her ear.  I don't know if it was just from all the coughing or what.  I was thinking that the last time we found blood in her bed she lost a tooth.  But, she won't let me really get a good look in her mouth to see.  And I didn't find a tooth, so who knows.

Despite feeling like crap, she did play with Rooney some.

Geez, Rooney.  Don't mind Harlie, just lay wherever you want.

She even smiled.  Which sorta proves that dogs are healing.
For this brief time she wasn't thinking about how awful she felt.
Tom made chicken and pesto pizza tonight (yum!) and while we were eating I looked up and saw Rooney's little head peeking from the other side of the table.  We NEVER feed him people food, but I guess he hopes we'll change our mind one day.


Harlie signing "sick" to me.  
When I tried to tube her water or food, she covered up her g-tube with both hands and flipped out.  Sometimes she really breaks my heart.   She handled the first two cans okay (she gets four in a day), but after that she wasn't having it.  I managed to get once ounce of formula with a couple flushes of Pedialyte.  Now that she's sleeping I'll sneak some more fluids in her.

Oh, and I forgot to tell you that the date of her sleep study is January 13th.  Less than nine days away now.  Awesome.  They actually called today to see if she was going to make it.  Now I have to ask, how the hell am I supposed to know that?  How can anyone guarantee you're going to be somewhere in nine days?  I plan on being there, yes.  Crossing my fingers that we get to go through the living hell that is a sleep study.

I have to share my friend Susan's blog post about her daughter's sleep study.  She has a few pictures of Ainsley all hooked up and that is the part that I'm dreading the most.  It's sticky stuff and Harlie HATES sticky stuff.  So, that should be a lot of fun.  Especially since they only allow one parent to stay, which means I'll be all alone to try to handle everything.  I can't wait.  It's going to be awesome.

Okay, must try to get some sleep while Harlie is sleeping.  I have no idea what's in store for us tonight.  And I'm supposed to run eight miles tomorrow.  So, a good night's sleep would come in handy.  Wish us luck!

More later!  It's already January 4th and so far, I'm sticking to my resolutions!  Although it's going to take some time to go through my e-mails...

Thanks!
~Christy


Wednesday, January 2, 2013

Doggie school and sleep study stuff

Rooney graduated from beginner's puppy school today.  He did great.  Today they had to show all their newly learned skills.  He can now sit, lay down (we're still working on perfecting that one), leave it (he's a pro at walking away from something he wants to put in his mouth), 30-second stay while sitting, drop it (when playing with a toy), loose leash walking, and come when called.  The things we're still working on are sitting politely when greeting, shake and speak.  I don't care much about the shaking or speaking.  But, I do need to get working on the greeting thing.  But that's such a hard one!

Anyway, here he is with his cap on...

He wasn't a fan of the hat.

He's such a good sitter!
I signed him up for the next class - intermediate training.  He'll learn to ignore distractions and some other cool stuff.  We hope, anyway!

Changing subjects, Harlie is getting sick.  She's coughing like crazy and requiring a ton of suctioning (which is never a good sign) and she has a lot of thick secretions.  Her nose is running, and she wants so badly to blow it.  So she asks for a tissue and then makes a sound like she's blowing her nose, but she's really not.  She's never been able to blow her nose.  With the trach, you can't build up the pressure. Unless she's wearing the cap, but then she just blows off the cap.  Oh, it's the little things...  Her oral feedings are not going well (she has a really hard time eating orally when she's trying to manage increased secretions).  Ugh.  Wouldn't you know it?  She has four days to get better before school.

And I don't even want to think about what this means for her upcoming capped sleep study.  I am trying really, really hard to just let it go and let it be whatever it is supposed to be, since none of this is in my control.  But, it is hard.  Really, really hard.

Let me see if I can explain it simply and without 5,000 words...

Her Boston docs want her to have a sleep study before they will schedule her next jaw surgery.  If she passes the sleep study (can sleep without problems while wearing a cap, which means the trach is closed off, and all her breathing is done through her mouth and nose) then she could potentially be decannulated (have the trach removed) and she wouldn't need surgery until she begins to have breathing issues.  Another jaw surgery is inevitable (in fact, they've told us several are most likely in her future).  The bone they put in her jaw will never grow at the same rate as the rest of her good bone, so eventually, she will outgrow her current jaw.  And that will continue to happen until she's done growing.

However, if she doesn't pass the capped sleep study (which is the result I'm expecting based on my home studies here), then she cannot be decannulated and that means that we would want her to have jaw surgery asap (this summer).

But, we need to get her on their schedule because we can't afford her to miss any more school if we can at all help it.  And I'm afraid the more time that goes by, the more likely we won't be able to get a summer date that affords her surgery and recovery time before school starts.

And she cannot have the sleep study if she's sick.  And getting a sleep study date takes months.  We scheduled this date two full months ago.

So, if we have to reschedule the study, then as you can see, we'll be well into 2013 and will likely not get a summer date, which means we'll have to decide if it's worth her missing school (really not an option) or if we can wait another WHOLE year for surgery.

Ugh.

So, like I said, I'm trying really hard to just let things be.  Because I have virtually no control over any of this.  What I really need to do is just embrace the trach for the long haul.  But, I just can't think about that.  The thought of her still having the trach years and years from now is more than I can handle.  I need to break it down in smaller chunks of time.  Because when I think about her going to the pool, well, it's just too much.  She's six and she still fits in an infant raft with a built-in seat.  That isn't going to last forever.  What are we going to do then?  She loves the pool!

Anyway, so that's the scoop on the capped sleep study.

Okay, must go and take care of some things.  More later!
Thanks!
~Christy


Tuesday, January 1, 2013

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