Sign of the Day

Busy

Sign of the Day

Dog

Sign of the Day

Fun

Thank You!

To this wonderful friend, who brought me this chocolate last night (in response to my last post):

Good people are such a blessing!  You turned my night around.  Thank you, Brittany!

And, here's a pic of Harlie posing last night - showing me her bloody ear:

It collects around the edge because of the hearing aid.  It pretty much stopped yesterday afternoon.  So this isn't bad.  Still no date for her ear tube placement or bronch.  And I forgot to tell you that her pediatrician said even though there's no more wax build-up in her ear - it is FULL of fluid (not yet infected).  I don't know what that fluid does to her hearing, but I can't imagine it's good for it.  We really need that new tube!!!

We had a really good session at feeding therapy today.  But, since I have to run off to the next therapy session, I'll have to fill you in later.  I have so much on my mind that I want to blog about!  Soon.  I hope.

More later!  Thanks again, Brittany!

Thanks,
Christy

Sign of the Day

This month is February.

And you also get to learn the F, E, and B from the alphabet.

Thanks,
Christy

Sign of the Day

Today is Monday and there's no school.  So, we're going to the playground.

Another post coming this afternoon.

Thanks,
Christy

Cardiology Pre-Op Appt.

Yesterday we went to Northern Virginia for her pre-op appointment with her cardiologist.  While I wasn't feeling 100%, I was certainly better than I was on Wednesday.  The trip went okay, all things considered.  Since I was in bed all day on Wednesday, I didn't get things ready like I normally do (put gas in the car, clean it out a bit, pack her bag, etc.).  So, we jumped in the car and headed out of town and I totally forgot to look at the gas gauge.  Oops.

So, we got on the HOV, which is a gamble.  And even though I feel like we went there just recently, I couldn't remember how to get there.  This appointment wasn't at the hospital (which I could drive there with my eyes closed) it was at the outpatient location in Fairfax.  Anyway, I forgot that there isn't an exit for 495 from the HOV.  Darn it!!!!  So, my gas light is on, I'm driving in the wrong direction and can't do anything about it because there's no exit for MILES and the traffic is backed up and crawling.  UGH!

Finally, we get to an exit (the Pentagon) and I felt like it was too risky to turn around and get back on the interstate without putting gas in the car.  It was LOW.  And one thing I have noticed about Northern Virginia is that there doesn't appear to be very many gas stations.  So, we drove for a bit and asked another driver where a station was.  Luckily it was fairly close and easy to get to.  Unfortunately it was super expensive (like 30 cents more per gallon!) and when leaving the station it forced you to go in one direction (not the way we wanted to go, of course).  So, after breaking a few traffic laws (I saw no reason why you couldn't make a u-turn there!) we were back on track.  Whew!

And we arrived only 10 minutes late.  Not bad.  Funny though - when the nurse took us back, she said, "I was thinking it wasn't like you to be late".  HA!  So, I thought to myself, she thinks we're someone else (because I'm always late) and I don't think I've ever seen this person in my life.  But when we get in the room she makes a comment that she remembers Harlie very well.  I always feel so bad when I don't remember people who remember us.  But, in my defense, there have been so many people...

Anyway, Harlie had an EKG and an ECHO.  And she hated every minute of them.  Neither of these tests hurt at all.  But, the whole thing freaked her out and she cried and cried and kicked her feet and was super mad and probably super scared.  And it took two of us to hold her down.  In her mind, I can only assume that she has no idea what's coming next.  It kills me.  One day it will click for her, I just don't know when that will be.

Heart-wise, she's fine.  I've always heard that about a year after the Fontan surgery (which she had in July 2010) that they do another cardiac cath and possibly close the fenestration.  I know most of you have no idea what I'm talking about.  But, right now, it's just too hard to explain it - so don't worry about it for now.  Her cardiologist doesn't want to do that anyway.  She wants to wait longer.  The issues that Harlie's heart has right now are:

There is still some muscle causing a little bit of obstruction when the blood tries to leave her heart to go to her body (this is where they did the DKS surgery in June 2009).  Right now it is still considered "mild" so that's good.

Something about the pressures in her Fontan are a little high.  But, it's okay.  She was crying, which makes the numbers be at their worst.  And even at their worst she wouldn't do anything right now anyway.  So, all's good - for now.

She wanted to check out Harlie's heart rate.  Which means a Holter Monitor.  Ugh.  After the two tests earlier, I really did not want her to have to have a Holter Monitor.  She has to wear it for 24 hours.  And while I really would rather her not have to deal with it - a) she couldn't have it done in the hospital after surgery because of her body cast and b) I couldn't live with it if I didn't do the Holter and there was something wrong.  So, even though I am sure everything is fine, it is better to be safe than sorry.  Even if that means that Harlie will be mad at me.  Yet again.

As we were leaving, Harlie kept signing "off" - she did not want to leave with those things stuck to her chest.  We finally got her dressed and out of there with her holding her chest and stomach protectively.

Of course, at the time, I totally forgot about gymnastics this morning.  So, I struggled with the decision to let her try to go and participate (with the leads, cords and monitor I'm thinking it would be difficult) or keep her home.  I hate her missing it since she loves it so much.  But, last night her pulse ox alarmed several times with low oxygen sats (74), which is weird because she's been hanging out in the high 80s.  And for the first time in MONTHS we had to turn on the oxygen concentrator.  So, combine that with her runny nose she's had for the past few weeks and we ultimately decided to just keep her home for the day.  No gymnastics.  No school.  Total bummer.

Back to the appointment, the only thing that really bothered me was that her doc said that the anesthesiology team would make the decision as to who is her anesthesiologist - a cardiac anesthesiologist or one with more ortho experience.  ACCKKKKKKK!!!!  WHAT?!?!?!

You might remember this recent post which would explain why the thought that she wouldn't have a CA totally stresses me out.  Not that any other anesthesiologist wouldn't have made the same decision - but still.  And when he did chest compressions, he knew he was dealing with a Glenn circulation - not sure how that plays into it.

So, the anesthesia team will decide if she needs one more experienced in spinal fusion surgeries or in the heart.  They could do a combo - but not sure if they would have a CA with an ortho consult or the other way around.  I suppose the combo would be fine - but to not have a CA in there at all would just stress me out.  Period.

I guess at this point, I know just enough to make me scared.  If I knew more, maybe I wouldn't be so scared about their decision.  But how in the world would I know more about anesthesia???  We have an anesthesia pre-op appointment the week before her surgery.  So, I'm just not going to worry about it until then.  And then we'll talk face-to-face and I'm sure I'll feel better about it after that.

The trip home was fine.  No traffic, really.  We stopped for lunch and let Harlie go potty.  She walked through the restaurant holding her chest and stomach and walked like she was hurt or something.  I guess she's got a little drama-girl in her.

Then, that night Tom and I went to a seminar for parents who are transitioning their special needs kids into Kindergarten.  I will talk about that later.  This post has gotten long enough!

As always, thanks for reading!
~Christy

ps - I might be going a little crazy with the signing links.  Sorry! But I can't help myself!  It's so fun!

Sign of the Day

Today is Thursday and we are taking a trip to Northern Virginia for Harlie's first pre-op appointment.  This one is with her cardiologist.  In two weeks we go back again to see her surgeon.

I was so sick yesterday.  I must have caught a touch of the stomach bug that Murphy and Cooper had.  I was down for the count.  I had to call Tom and ask him to come home from work, that's how bad I felt.  But, while I don't feel great - I feel a lot better (that's one of my favorite signs) and think I should be able to travel okay.

I'll let you know how it goes.  I'm sure it will be fine.

Thanks,
Christy

Sign of the Day

I'm feeling yucky today.  So, here you go...

Sick

More later!
~Christy

Sign of the Day

Oops.  I forgot it was/is Valentine's Day.  Can you tell that we are oh so romantic around here?  You don't even want to know what I did today.  Maybe I'll get the courage to blog about it one day.  It has the potential to provide lots of awkwardness and tons of humor.

So, Happy Valentine's Day.

Thanks!
~Christy

Sign of the Day

Today is Monday.

I know, seems totally lame.  But I don't (didn't) know the days of the week yet.  I've been learning the words that Harlie would need to know - a total toddler vocabulary.  But, apparently, she's learning the calendar at school, so it looks like I better get on board.

And, we are really going to start working with the calendar - in preparation for her body cast.  I really want her to understand that she won't be in it forever.  So, after talking with her teachers (more on that soon - an exciting post, if you ask me) they said that she likes the calendar and that would be a good way for her to understand that it isn't permanent.  We will put a star on the anticipated removal date (hopefully they can give me a good idea of when that will be) and let her mark off each day as it passes.

So, the days of the week are good signs for us around the house to know.

My "exciting" post will be coming soon.  Hopefully I'll be able to finish it tonight.

Thanks!
~Christy

Sign of the Day

Some manners for you today:

Please

and

Thank you (you're welcome is the same sign)

And thanks for those of you that have commented on my Sign of the Day.  I'm glad to know that you're liking it.  Not that you have to use them, mind you.  But, it's just nice to be able to share a way of communication that is so important to so many people.  Even when you don't see it that often.  Back when I was just starting to learn some words I was in Target and I asked an employee where something was.  He communicated to me that he couldn't hear and I was able to ask him where it was and say thank you.  It was so awesome.  It made my day.

Plus, for those of you that see Harlie - I think as she is getting older, it will make an impression on her to see those around her trying to sign.  She definitely notices that stuff now.

Okay, thanks and I'll have another "real" post for you soon!
~Christy

Sign of the Day

Today is Wednesday.

I promise I will actually write a post soon.

Thanks,
Christy

Sign of the Day

Point to yourself first, sign these two signs and you've got yourself a full sentence!  Isn't signing fun?

go to


work, as in "job"


I have so much to blog about but just haven't had the time!  I hope I can get to it soon!

More later!
~Christy

Sign of the Day

In honor of last night's event (the Super Bowl for those of you non-sports fans):

Feel


And for you Steelers Fans:


Sad


And for you Packers Fans:


Happy


Congratulations


Have a good day!  More later!
~Christy

Sign of the Day - Pittsburgh, Football and Beer

In honor of the day's events:


Pittsburgh


Football


Beer

Go Steelers!!!

Thanks,
Christy

Sign of the Day - Rain

Today I'm going to post two signs.  In honor of our current weather conditions...

Rain


Wet


Thanks!
~Christy

ps - In the sign for "wet", he's signing "water" first (the sign for W up to the chin).  So, really you're getting three signs.

Sign of the Day - Cold

Thanks to a friend's suggestion - I'm going to attempt to feature a Sign of the Day post.  Every day.  Not sure if I'll be able to do it every day - but I'm going to try.  I thought I'd start out with an easy one.  

Sign for Cold

Feel free to give me word suggestions.  Could be fun!

Thanks!

~Christy