Sunday, February 27, 2011

A Big Moment!

Harlie finally learned how to do something really cool...

She was so happy when she figured it out!  (She actually figured it out at speech therapy last week.)

Just in case you don't get why this is just now happening, or why I think it's so cool - she's been breathing through her neck her whole life.  So, forcing air out of her mouth had to be learned.  It's the PMV (speaking valve) that made the difference (that little purple thing on her trach).  The valve allows air IN but not OUT.  So she inhales through the trach, and exhales through her mouth and nose.

We've been struggling with her tolerance of the PMV for years.  Since she had an upper airway obstruction, breathing out her mouth was impossible.  Thus, so was the use of a PMV.  And after two jaw reconstructions, we still aren't sure if they worked well enough for her to be decannulated (removal of the trach).

I'm trying not to get my hopes up that the last jaw reconstruction worked.  It's been over a year now, and she's tolerating the PMV more than she ever has.  She wears it during all her school time and some at home.  And when she wants to blow bubbles, she knows she needs to wear the valve, so that's extremely motivating.  Maybe one day it will click that talking is pretty darn cool, too.

Here's a video from our dinner the other night...

We are working on self-feeding, too.  So, her blowing bubbles and willingly taking her own bite (with Cooper's help and support, of course) in the same 17 second video is crazy awesome!  Woohoo!  And how cute is Cooper saying "Good girl!"

Does this look like a happy girl or what?

Okay, more later.  I have a lot of blogging to do.


Thursday, February 24, 2011

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!


Wednesday, February 23, 2011

Things that are annoying me today.

1.  The fact that my first grader's homework requires him to TYPE his spelling words on MY computer and practice changing the font size and style.  Then I have to print it out and send it to school.

Don't get me wrong.  I can clearly see that computers are going to be a part of education from early on.  I get that.  But, HE'S STILL LEARNING TO WRITE, PEOPLE!  It just seems a bit silly to me to start making typing homework when writing is still a bit of a challenge.

2.  The fact that I only chose to go to Wal-Mart today because I had something to return there (and I could get the milk and eggs I needed).  And I forgot to return it!  UGH!

3.  Harlie's hearing impairment.  Today it's got me down.  Granted, speaking would have been difficult regardless - but now everything is infinitely more difficult.  And I am going to have to start becoming more of a hard-ass when it comes to her and her lack of listening skills.  And, frankly, I don't wanna!!!!  Waaaaaaaaaaaa!

4.  That I can't run like I want to.  Because I'm sick.  I seem to always be sick lately.  And I don't like it.

5.  The laundry.  6 loads to be exact.

6.  The fact that I still don't have a $#$^&! date for Harlie's bronch and ear tube placement.  UGH!  I left another message yesterday and still haven't heard back.  We have a limited window of opportunity.  Come March 28th - there will be no other procedures for a while. Obviously I can't have her going in for anesthesia after she gets the body cast.

And I forgot to tell you that Harlie saw her pediatrician on Monday (took advantage of no school) and he looked in her ear and said there was no more wax build up (great!) but then her ear started bleeding and hasn't stopped since.  That was MONDAY.  It appears to be stopping today.  But this morning it was FULL of blood.  Seriously?  So, the fact that I can't get her in to see her ENT in DC is really starting to stress me out.  She has one mediocre ear for crying out loud!  We need to preserve it!   A little help from her docs would go a long way....

7.  This freaking cough.  Oh, did I mention that already?  Oops.

8.  How many times I have to repeat myself in any given day.  I'm like a broken record over here.  And does anyone care?  No.  Apparently, the littler you are the less you care.  And I don't even know if "littler" is a word.  And normally, I care about that kind of stuff.  But not today.  And I'm not even going to look it up.  Nope.  Not going to look it up.  Oh crap.  I can't do it.  Yes.  It is a word.  Ugh.

9.  I want some chocolate.  And we don't have any.  And I meant to get some at Wal-Mart.  But I forgot. Dammit.

Now I have to go and do some laundry.  It buzzed like 15 minutes ago.

What's annoying you today?

Sign of the Day

This month is February.

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


Monday, February 21, 2011

Happy Birthday!

Today was my Dad's 83rd birthday.  Other than his occasional grumpiness, you wouldn't know it.

Dad and I at the Richmond Marathon in November 2010.

Dad on vacation in 2005.

Dad and Mom on vacation in 2008.  

I wanted to show you a picture of us at my wedding, but that was before digital.  Ugh.  Can you believe that?

Anyway, we had my parents over for dinner tonight.  Tom made his so yummy shrimp and grits.  Oh, so, so good!   That is definitely a special occasion meal.  And what a better excuse to eat them than my Dad's 83rd birthday celebration?

I was trying to think of a way to describe my Dad.  And I think a recent memory does a good job of illustrating who he is.  About a month ago, when Tom told me about possibly bidding on the local Ronald McDonald House kitchen renovation, I went to their website and looked around.  I saw that they collect pop tops.  At some point my Mom was over and either I told her, or she saw our collection.  She told my Dad and he went into their garage to their aluminum can collection bin and took all the tops off the cans to give to me.  I think it was several bags of crushed cans.  It was a lot.  And I'm sure it took him a long time.  And talk about tedious work!  But, he didn't mind.  He knew I wanted them, so he got them for me.  That's just the way he is.

Happy Birthday, Dad!  Thank you for all you do!  I love you!

Sign of the Day

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

Another post coming this afternoon.


Friday, February 18, 2011

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!

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

Thursday, February 17, 2011

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.


Wednesday, February 16, 2011


A couple of weeks ago I had a parent/teacher conference with Harlie's preschool teacher and hearing impaired teacher.  It went great.  We talked for two hours.  We were the last to leave the school - and never once did they make me feel like they wanted to leave.  I feel so lucky that Harlie has these teachers.  They really seem to care about her a lot.  And they go the extra mile for her, that's for sure! Thank you so much Mrs. KC and Mrs. CS!

Here's what we discussed:

Her stubbornness.  I asked them how she ranked in this department.  She seems extremely stubborn to me, but I only have three kids, so what do I know?  Before I could finish asking the question her HI teacher leaned forward and said, "A 10.  Definitely a 10."  Her HI teacher said that they (her and Harlie) "lock horns."  And she also said that she's never seen Harlie cry.  That's pretty crazy considering she's been one of her teachers since September.  Luckily, her teachers realize that this stubbornness of hers is such a good trait for her life.  They said they just have to be more stubborn than her.  Easier said than done.  I know.  I've tried.  That tiny little girl will beat you down to nothing if you let her.

Homeschooling.  They both felt that it is important for Harlie to receive homeschooling while in the body cast.  And that it should be done by them versus another teacher that Harlie doesn't know.  They both felt that it takes a while to earn her trust, so they don't want a new teacher coming in during a vulnerable time for her.  Her preschool teacher will come two mornings a week and her speech therapist (with the school) and her HI teacher will alternate weeks, coming once per week.  So, Harlie will receive at least three visitors a week.  I think her private speech therapist might be able to come once a week, too.   I think having them come to see her will greatly help her spirits.

They also said that they don't want to come until she is surely over pain.  They said that if they let her slide once (because they feel bad, so they don't make her do something) then they will be fighting that forever.  She's a tough cookie.  You can't let her get away with anything or it will come back and bite you.  If you give her an inch, she'll take a mile.

Kindergarten.  This is the biggie.  They said that she has all the skills necessary to start Kindergarten in the fall!!!  Can you believe it???  She knows her letters, shapes, numbers and colors, can write her name, can cut and some other stuff I don't remember.

I had just assumed this whole time that I would hold her back.  She will turn 5 on September 25th, which means she will surely be the youngest in class.  This trend of holding kids back when their birthdays are months before the cut off drives me crazy.  If everyone just followed the "rule" (unless there are special circumstances, of course) then it would be okay.  But so many parents are holding their kids back so they are bigger and better in sports or whatever.  Ridiculous.  Don't even get me started...

Anyway, the fact that they feel that she is "ready" for Kindergarten, considering all that she's been through, is just amazing to me.  She learned to sit up at one year.  She learned to walk independently at two years.  We didn't discover she was hearing impaired in her good ear until she was three years.  That alone could cause a huge delay in development.  And all in all she's spent a considerable portion of her life in a hospital.  And she's ready for Kindergarten???  Nuts.

They said that she would go into a regular class.  And while this absolutely terrifies me, they said that's where she belongs and she needs the peer modeling.  Being in a special education preschool does not allow her to see how she is "supposed" to act in a class.  Meaning that all the kids in her class refuse - refuse to participate, refuse to talk, refuse to answer questions, whatever.  So, she learns that is "acceptable" behavior (even though it really isn't, but it's a special education preschool class for the developmentally delayed).

Whereas in a regular class, all the kids are expected to stand in line, participate, follow instructions, etc.  All things she's capable of if it is expected out of her.

Unfortunately, she would start Kindergarten at her current school and not our school right down the street from us.  While I hate that she won't go to the same school as her brothers and we will miss out on walking to/from school together (something I LOVE), I know that is the best place for her.

Her current school is pretty interesting.  It has a very small zoning so that only one class per grade is actually zoned to go to that school.  The rest of the school is bused there for their Exceptional Education - they have the county's Talented and Gifted Program for elementary education and they have special education (hearing impaired is their thing).  So they have several interpreters on staff, they check to make sure that all hearing aids are working every day, there are students that sign there, and she is exposed to them.  I just can't put her in an environment where she is completely isolated from all that.  And she will still get some hearing impairment instruction (I'm assuming).

We don't have to make a decision now.  We will have another IEP meeting around May to discuss the plan for the next year for her.  We'll have the whole team, so everyone can have some input and give me their ideas, suggestions and opinions.  And we'll go over what other options there are for her (other than Kindergarten).  But, unless something major comes up, I'm thinking we're probably going to send her to Kindergarten in the fall.

Here's what I'm thinking:

We can always change our mind.  So, if we don't feel like it's the best place for her, we can pull her out and put her back in preschool.  Or we could see how she does, and if she needs to repeat it, then let her repeat it.  So, it's not like it's a permanent decision.

I am so anxious to see what Harlie can do when the bar is raised.  I know she is so capable and it is exciting to think about what could change/improve about her as a whole when she learns more about how to behave in school.  Imagine what this could do for her communication!!!!  Right now most of her classmates are non-verbal.  She'll be surrounded by verbal kids and she will get so much in language development - even if she isn't speaking.  Just hearing it all the time will make a big difference.

If she has to miss school for surgeries and ends up missing too much (I don't know anything about this, and I suppose they could homeschool - but if that weren't possible) and she had to repeat a grade, she would still be the same age as her classmates.  Whereas if we held her back and had her start Kindergarten when she was just weeks from turning 6, and then she had to repeat a grade, she would be so much older than everyone else.  I feel like starting her now would give us some wiggle room.

I am lucky in that I have professionals in the education field - and hearing impaired field - to give me an opinion on what Harlie is "ready" for.  One thing I learned early on in parenting is that we, as parents, underestimate our children.  It's just the way it is.  So many things parents say their kids aren't ready for, but it's really the parents that aren't ready for that phase, change, adjustment, whatever.  And I don't want to do that with Harlie.  I need to teach her/show her that I have confidence in her and that I know she is completely capable of learning and handling whatever comes her way.

So that's the big news around here.  I've been mulling it over in mind every day since our conference.  It is so hard to believe that this little girl

Two days old.

This was right after her first heart surgery - 4 days old.

could start KINDERGARTEN in the fall!!!  Where has the time gone?  Sadly, most of the time it feels like her birth was ages ago.  In the time she has aged four years,  I've aged ten.  But, in my mind, she's still a baby.  So confusing.

I am so darn proud of her.  There are just no words.  To think of all she's been through and she's "ready" for Kindergarten!!!


Sign of the Day

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


More later!

Monday, February 14, 2011

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.


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.


Saturday, February 12, 2011

Sign of the Day

Some manners for you today:



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!

Friday, February 11, 2011

A year after the "Tough Day"

It was a year ago today, that we almost lost Harlie.  Crazy to think about.  And it is 'funny' to read my post from that day.  I pretty much glazed over what almost happened.  I didn't write about what it felt like to hear what happened.  Ah, I suppose you can figure that out.  I remember that it took a few minutes for me to react.  And it was interesting to hear how it was in the OR.

Harlie's plastic surgeon came out to talk to me first.  And for those of you that don't know, her plastic surgeon is Dr. Bill Magee.  He and his wife founded Operation Smile.  And I worked there from 1997 to 2000.  So, I knew him prior to him becoming one of her surgeons.  I think that relationship makes our conversations a little more personal and heart felt.

And one thing I didn't mention in that post was how easily it could have gone the other way.  During pre-op stuff that morning, her cardiac anesthesiologist (CA) (the same one that was in the OR during her jaw reconstruction in December) was debating on whether to put an A-line in (an arterial line vs. a regular IV).  The benefit to an A-line is that they can constantly monitor her blood pressure.  Whereas with a regular IV (just in a vein, not an artery) they have to use a blood pressure cuff on a timer, meaning that it takes a blood pressure every three minutes or whatever time they want.

There's more to getting an A-line in vs. a regular IV, of course.  So, when the surgeon and CA were in the exam room prior to surgery, they were discussing it.  Her surgeon said it would be a quick 45-minute procedure, not sure if it was worth getting an A-line.  At that time her CA said he was debating it because he didn't know how much blood loss she'd have with the wound, so he would think about it and make the call in the OR.

Thankfully, he decided to do the A-line.  And that's what saved her life.

Since it was constantly monitoring her blood pressure vs. only getting a BP every so-many-minutes, they knew immediately when her heart stopped beating.  And they told her surgeon to back up and get out of the way, and went into action.   Her surgeon said it was so impressive how calm and controlled and quick they were at getting things right again.  And it wasn't until they had her "stable" enough to continue the surgery that they all took a deep breath.

He said she gave them all quite a scare.  Luckily, I was none the wiser.  Sitting out in the waiting room with Brandy (Harlie's nurse), probably enjoying some quiet time to myself.  Ugh.  That thought kind of makes me sick.  I'd rather never have quiet time to myself again!

Anyway, that's pretty much the story.  Not a good a experience for a parent, that's for sure.  Just another reason for me to be thankful every day.  Which I was prior to that, but still.

And here we are.  A year later.  And today Harlie has gymnastics!  Which she LOVES.  And then school.

So, so thankful we are to see her smiling face every day!!!


Thursday, February 10, 2011

Family Photos

Super Bowl Sunday, we super excited Steelers fans headed to the front porch in all our Steelers attire for family photos.

And, as usual, our three wonderfully cooperative children sat still and smiled sweetly, for photos.  


Ahhh.  There it is.

Good enough for me!

And, just in case you're wondering... yes.  I do see that Murphy's hair is messed up.  He has the worst hair.  Okay, I know it's not the worst.  But, it is not an easy head of hair to work with.  It is full of cowlicks.  And it needs to be short or long.  Any length in between and it becomes unmanageable.  I like it short, but that means we buzz it at home (which makes it really short and better in the warmer months) or we take him somewhere often.  And it's hard to keep up with often.  And honestly, we are so used to his crazy hair that we hardly notice it anymore.  It's not until I look at photos that I think, "Oh, how did I let him out of the house like that"?! Oops.

A perfect example of that can be seen in the Pinewood Derby photos.  If you click on the photo of Murphy standing next to the track, you can see his hair sticking up in the back.  Yep.  He dressed in his Cub Scout uniform and I let him walk out the house.  Just like that.  Bye Murphy!  Have a good time!

Oh well.  I suppose there are worse things.

Oh, and just in case you're wondering...Cooper has the EXACT same hair pattern.  Look at this photo for proof...

It is just wrong to have to spend time on a boy's hair style.  Wrong.  Like I don't have enough to worry about.  Geez.

I have SO much more to blog about still.  Lots of new posts below, too.


Harlie wants a dog

I think Harlie is trying to tell me something...

She set up that scene and then came and got me to show me.  And the funny thing is that it wasn't the first time.  A few days before that she showed me the puppies sleeping on the dog bed.  I didn't think that much of it then.  But, when she did it again, I knew she was trying to communicate her wants to me.  

Then, a few days later...

See?  She wants a dog.

Pinewood Derby

On Saturday (the 5th) Murphy had a Cub Scout event - the Pinewood Derby.  They had to take a block of wood and turn it into a car.  It had to weigh less than five ounces.

Here's Murphy working on his car:

The finished product, complete with lego men.

Murphy's car came in First place in his den (five boys) and Ninth place overall (43 boys).  

Great job, Murphy!!!

Wednesday, February 9, 2011

Tuesday, February 8, 2011

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!

Monday, February 7, 2011

Sign of the Day

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


And for you Steelers Fans:


And for you Packers Fans:



Have a good day!  More later!

Saturday, February 5, 2011

Sign of the Day - Rain

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




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.

Friday, February 4, 2011

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.  

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


Thursday, February 3, 2011

Productive Day!

I had such a productive day yesterday!  Since this is not necessarily the norm, I thought I'd share.  Here's what I accomplished:

Phone calls:

  • Preschool contact regarding changing Harlie's individualized educational plan (IEP) to include homebound services while recovering from spinal fusion
  • New speech therapist confirming appointment and asking about home services (if available)
  • Rehab company to secure rental of reclining wheelchair
  • Harlie's nutritionist from years ago about becoming her patient again
  • A preschool I want to look into for Cooper for the fall
  • Children's National Medical Center (CNMC) - scheduling Harlie's pre-op appointments (that took forever and involved multiple phone conversations and we aren't done yet)
  • Our social worker at CNMC

I also:

  • did laundry
  • took a 1-hour TRX class at the gym
  • went to the grocery store
  • vacuumed and mopped the kitchen floor

I was pretty pleased with myself.  Especially since I had a sick kid at home, too!

Murphy stayed home yesterday and today with the stomach bug.  It hit him during gymnastics on Tuesday afternoon.  He told me during class that he didn't feel good.  And then on the way home - in the car - I could tell he was going to throw up.  Luckily I had a small paper bag (the kind with twine handles) and I tossed it to him just in time.  Whew!  He continued to vomit from 3pm to 3am.  Poor guy! It was not a fun night, that's for sure.

Luckily after that last time at 3am, he was done.  So yesterday he just hung out on the couch watching movies.  He didn't eat or drink a thing - despite my constant prodding for him to at least stay hydrated with Gatorade and eat a banana.  Today he is much better, but I wanted him to eat something and get some of his energy back before sending him to school.  So, he'll return tomorrow.
So, I walked into Murphy's room the other night to say good-night and him and Tom were having a serious talk.  He asked Tom if he died and went to Heaven if he could ask God if he could come back.  This obviously lead to more talking.  I tried to comfort him and told him that one thing that makes me feel better is to pray.  So, I said, "Dear God, thank you for all the blessings..." and that's when Murphy stopped me.  He said, "Wait a minute.  What's a blessing"?  Too funny!

Tonight I have a parent/teacher conference with Harlie's preschool teacher and hearing impaired teacher. And Murphy and Tom are touring a local radio station with his cub scout troop.  Pretty cool.

That's it for now.  More later!


Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...