Saturday, August 27, 2011

Patrick Henry Half Marathon vs. Hurricane Irene

Well, as expected, it was rainy.  And windy.

Conditions at the start (7am):

Rainy, 74 degrees, 94% humidity, variable winds 7mph (which totally increased in the two hours we were running).

Honestly, I had fun.  But that's only because of my running partners...

Heather, Me, Anna and Katherine.
Can you tell which one of us is super excited about running their first half? 
I am not a fan of running in the rain.  I like to run.  But I do not consider myself a die-hard runner, running in all conditions.  Much less a HURRICANE.  Okay, the beginning stages of a hurricane.  Either way, I think it was a miserable run.

It started raining just a few minutes after the start.  It was a drizzle at first.  And then it slowly increased the entire time we were running.  The winds increased as well.  At one point Heather said something and I said, "I'm sorry Heather, I couldn't hear you over the wind."  And we were shoulder to shoulder.  Not good running weather, to say the least.

We kept on feeling like we were running fast - and we'd look at our Garmins and our pace wasn't nearly as fast as it felt.  So deflating!

They changed the course this year.  Last year we ran through the cornfields and cow pastures (well, on the streets that went through the fields, I mean) first, ran a long mile at mile 4, and then went through the little town of Ashland close to the finish.  Frankly, I liked it that way better.

This year, they reversed it, and we ran through the town first, then the pastures, then the hill at mile 11.  The bad thing about it, which they could never have predicted of course, is that we ended up in the pastures and cornfields - with no protection - as the winds and rain increased.

One thing I liked about this run last year was the sound of all the tennis shoes hitting the pavement.  With no other sounds around, it was really cool.  This year our shoes were all squishy sounding.  Not so good.

Oh, and this year the start and finish was in a different place.  And it was RIGHT next to the railroad tracks (I could touch it).  And as we turned the corner and approached the finish (close enough to see the finish, too far to sprint to it) a train came through - and it was so LOUD.  I guess the conductor thought he was being supportive by honking that stupid train horn as much as he did.  I think I temporarily lost my hearing.

Anyway, we finished just in time.  My time was 2 hours and 10 minutes.  Every time I do a half marathon, my time is substantially slower.  (My first was 1:58, second 2:05, this one 2:10) But, we were not going for a PR (personal record) today, and considering the conditions, I'm happy with our time.

This is us at the finish:

Me, Heather, Anna and Katherine.
Congratulations to Katherine for her first Half Marathon!
FYI - the dude to the right (you can see his shoes with the orange laces) wears A LOT of cologne when he runs.  Wearing cologne should be BANNED from all running.  And I can't believe that someone has to be told to REPLACE cologne with DEODORANT. We were next to him at the start.  Then we passed him twice during the run.  He was SMELLY and I thought I was going to pass out.  Ugh.

Oh, I debated on whether to wear a running skirt or shorts.  Which is better in the rain?  I guess I can't really say because I haven't ever been as soaked as I was today, in shorts.  But, I think the skirt was a good call.  I was able to wring it out several times during the run.

When I got in my car to come home the rain really picked up.  I had to use the speedy wipers, that's how hard it was raining.

Looking back, I'm glad I did it.  But, boy am I glad that it's OVER.

Okay, must finish this before we lose power.  Good luck to all my family and friends who are in this hurricane.  I hope all is okay tomorrow!


Friday, August 26, 2011

Half Marathon

With Hurricane Irene approaching our area, I am off to run the Patrick Henry Half Marathon tomorrow morning.  From what I've heard, we should be done our run before the storm really gets here.  My fingers are crossed because I wouldn't enjoy running 13.1 miles (which will take 2 hours) in wet shoes.  Yuck!  And I hope it's not too windy.

Okay, I'll update you tomorrow.


Tuesday, August 23, 2011

Appointment with the surgeon..., not what I hoped for.

She wanted Harlie to wear the brace for another month.  But we compromised with two weeks.  That way she will have it off for school.  I told her that she doesn't complain - it's me that hates it.  And I recognize that the long-term goals of healing are more important than the pain of dealing with the brace, so if she really wanted us to keep it on, I would.  But, she said that two weeks will be fine.  That way when she goes potty at school, she'll be able to do it on her own.  It is hard to get her shorts up and down with the brace because it goes past her hips.

So, I'm thinking her surgeon would not have approved of this activity...

Notice Cooper posing.  What a ham!

And of course, some video...

How could I deny her this fun?  There is only so much activity I can make her miss.

Anyway, when she gets home after school, we need to put the brace back on her for the rest of the day.  And over time we can wean her off the brace by waiting longer and longer to put it back on her.  She said that it can actually be more of a discomfort to stop wearing the brace cold turkey because all those muscles haven't had to work much over the last five plus months.

I asked if she could resume normal activity once the brace comes off.  I had my hopes up for a gymnastics birthday party for her since she loved it so much and hasn't been able to go since the surgery.    But she said no.  No gymnastics until she sees her next and she will decide then.

So, the next time we see her?  MARCH 2012!!!!  I am SO bummed!!!  She loved gymnastics!

On a positive note, the surgeon said that her x-rays looked "beautiful."  On the side view one, she is much straighter than she was.  She said that she could start to curve forward over time - but she hopes that doesn't happen.  Of course.

Harlie is so cute getting x-rays.  She stands there and does everything the x-ray tech asks her to do.  And he was hilarious because he said, "okay, move your little foot back some.  Exactly." and then "bring your little feet together.  Exactly".  He was cracking me up.

Oh, and she can only carry a light backpack.  Which, I already knew, really.  But it just goes to show you how long this recovery is taking and how many things are affected.  Spinal fusion surgery is no joke.  I think I would have to say it has been the worst surgery so far.  And I sure hope we don't have to do it again.

On the way home there was an earthquake that measured 5.9.  The epicenter was in Mineral, VA, 25 miles from our home.  According to FB, it was felt from North Carolina to Canada.  We were in the car not that far from home, and we felt nothing.  I guess when you're moving 70 miles an hour in a car, you don't notice the ground shaking.  So, I apparently missed the biggest news story of the day.  Oh well.

Oh, and would you believe our luck?  We decided just a few days ago to try and take the kids to the beach - together - all of us - as a family.  Harlie has never been.  Tom took Monday off.  And after I run the Patrick Henry Half Marathon this Saturday, we were going to go to Virginia Beach to stay with some friends who we haven't seen in a long time.  We were going to go to the beach on Sunday and take a baby pool and umbrella for Harlie (since she cannot go into the water - other than just her feet, of course) and we were going to have so much fun!

And now Hurricane Irene is totally screwing up our plans.  The only FUN plans we had for the entire summer.  I am so, so disappointed!!!!  And I don't think we can squeeze it in after the storm passes.  A whole summer and the kids have done nothing exciting.  The boys and Tom went camping and boating a few weekends ago - but Harlie had to stay home with me.  I am so mad at myself for not making more of an effort earlier in the summer.  But it was SO busy!!!  Well, I am not giving up hope yet - but according to reports, it is not likely to happen.

Oh!  And my nephew, Charlie, is playing in the Babe Ruth Little League 13-year old World Series Tournament in NY.  Well, tonight his team won and Charlie got MVP!!!  He hit the winning run.  So now they play again tomorrow night.  What a great experience for him!  Congratulations, Charlie!!!

Okay, that's it for today.  More later!

Monday, August 22, 2011

Transitions and Kindergarten Screening

It is now Monday night.  I wrote this post on Sunday night.  I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child.  So, I'm posting it - with today's update at the end.


With just two weeks to go until school starts - there's a lot going on.  I'm pretty upset right now, so I'll try to be as understandable as possible.

Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten.  That school used to hold the Hearing Impaired (HI) program.  But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age.  And this is the first year, so you know how that could go.

Sounds like a good concept.  But, I have to admit that I was sad.  I liked where she was, and she seemed comfortable there.  People knew her.  And who actually likes change anyway?  Especially when it comes to your special needs kid?  But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.

We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well.  There's only a handful.  And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide).  All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.

Well, just a few weeks ago I heard that the principal has left the school.  And she was only there for two years.  And the one before her was there for a short time as well.  So, now I know that the school has been through a lot of change in the past few years.  And they have not hired her replacement.  So, the school has NO principal.  And school starts in two weeks.

At the ice cream social on Friday, the resource teacher spoke in place of the principal.  It appears that there is no assistant principal, so she will be filling in as the principal until one is hired.  So, you know that she will be stretched pretty thin.

Staff Changes
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though).  But she did get HI instruction from an HI teacher.  And she is awesome and is so good with Harlie.  She challenges Harlie in a way I cannot.  I'm her mother, after all.  So, I have been very thankful for this HI teacher.  She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).

During our last IEP meeting at the end of the school year, the county's audiologist was in attendance.  I asked her if Harlie would keep the same HI teacher at the new school.  She wouldn't tell me then because she didn't have all the assignments done.

During the summer, I found out that we would have the same HI teacher!  YAY!  I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position.  I also found out the county's audiologist has since retired.  And they are looking to fill her position.

I also learned that they have not filled the interpreter/instructional aide position.  At least, the last I heard they had not.  And I really want to meet this person and talk to them before school starts.  Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day.  This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.

But that person doesn't exist yet.  And there's two weeks before school starts.  What if they can't find someone qualified?  Do they hire anyone just to get a body in there?

Can you tell I'm slightly stressed about it?

And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all.  And she doesn't know who will be assigned to Harlie yet.  What?!?!  I can't tell you how much I HATE to lose her support.  She has been awesome with Harlie and I really like her.  It truly saddens me to lose her!!!

I can't help but feel that everywhere people are going is more important than the places they're leaving.  And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore.  And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?

I'm really trying hard not to freak out right now.

But, I'm already doubting "our" decision to send her to kindergarten.  There just seems to be too much transition and instability right now.  Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body?  Ultimately Harlie will suffer if the county doesn't figure things out.

And who the heck do I talk to about all this?  Who's my point of contact?  And if I don't send her to kindergarten where would I send her?

The only person left for me to talk to about this would be Harlie's kindergarten teacher.  And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot.  Certainly no time for discussing all this stuff.

You know, I'm just sad and scared.  Everyone I was trusting to help Harlie be all she could be is gone.  And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed?  I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment.  The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.

At this current time I do not feel that the support is intensified.

Nursing Changes
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant.  YAY for her!  She is due on Thanksgiving and she's having a girl.  At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now).  Anyway, while this is wonderful news for her and her husband, it does impact us a bit.  Right now the plan is that she will return after a maternity leave.  And then I will keep her baby during the day, so she can go with Harlie to school.

But in her absence, we need a nurse to go with Harlie to school.  And this scares the crap out of me.  I haven't had to find a nurse in over four years!!!  I admit - we are spoiled in this area.  We have been truly blessed and lucky.   But now I have to find someone.  That is not an easy task.  And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby).  And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan).  So, I'm going to have to wait until much closer to November till I can really start looking seriously.

And I also know that things don't always go according to plan.  And Brandy could have this little girl and decide that maybe she doesn't want to come back to work.  And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.

So, needless to say, I'm stressed.  More so than I've felt in a really, really long time.  BUT - I am trying to keep things in check - because I am really hoping that things will work out.  Trying to have faith in the county since they have done well by us so far.  Keeping my fingers crossed that these changes will be good when I look back on them later.

Monday Night Update

We had the screening with Harlie's kindergarten teacher today.  So, a lot has "changed" since my post from last night.

First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot.  And we were able to talk about a lot of this stuff.

Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school.  So, she's not a new hire.  I guess they had to do a lot of shifting around since the head of the department retired.

And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.

So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic.  And there is an HI program, they were just figuring out all the changes.  I am normally so much calmer than I was last night.  But, I have to say that my emotions are all over the place right now.  At this point I just need school to start already so I can get over this "hump."

The screening itself didn't go so well.  She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign.  I should have realized it was doomed from the start...

Both Harlie and Cooper have been fighting some sickness for a couple of weeks.  Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon).  Harlie went on antibiotics and got better.  A few days after the last dose, she started to get sick again.  And Cooper's been coughing something terrible for the whole time, too.

They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician.  They were booked, but squeezed us in at 9:40.  We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30.  And we had to be at Harlie's school at 11am.

So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day.  She transferred me to someone's voicemail.  I left a detailed message to NOT send the RT at 9:30.

As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company.  Of course, they didn't get my message.  When I told the RT, she said that the person I left the message with is on vacation this week.  Seriously?  That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away?  Geez.  And it didn't help that his voicemail message did NOT say he was out for the week.  Grrrr!!!!

I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.

Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around.  And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.

Oh, and I couldn't find one of my flip flops.  And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing.  Where's the justice I ask???

So, I run and put Cooper in the car and of course they parked in the driveway.  Behind me.  So I have to go tell the RT to move it.  Seriously - the house was CRAZY and this poor new trainee was just looking around.  The RT said that she warned the new girl that it was organized chaos.  I wish I could agree with that.

Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check.  And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.

We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes.  So, we're late.  Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.

By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am.  So, I ask our nurse if there is any way possible to get us out in time.  Which I feel awful asking for since I was LATE.

So, doc looks in Harlie's ear - no big deal.  But as soon as she sits up blood is pouring from her ear.  This is the second time that's happened after just looking in her ear.  I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding?  He said he didn't see anything in there and he didn't feel like he scraped her or anything.

So, we wipe her off and with four prescriptions in hand, go running out the door.

We rush home, drop Cooper off with Maggie and the boys and rush to the screening.  We were about 10 minutes late for that.  I take a deep breath and wait for her teacher.  I turn around and look at Harlie and her whole right side of her face is covered in blood.  Nice.  She continued to bleed for an hour and a half!  Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.

Perfect!  UGH!!!!

Which is why the screening didn't go so well.  Oh, and she's sick.  And her tummy was upset and she had to go potty several times.  Those things didn't help.

And she was acting super shy with her teacher.  Which I totally understand.  There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet.  She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.

Then when she was asked "which one is the square" she pointed to the circle.  Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!

Her teacher had her move next to her thinking that might help.  And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table.  Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).

Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers.  It was as if she were whispering!!!  But in sign!!!  It was so interesting to watch!  And incredibly frustrating!!!

Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff.  The teacher said that this behavior is completely normal - and I shouldn't worry.

Okay.  So, that was that.  It was noon and Brandy and I were pooped!  It was a crazy morning.  Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls.  I tried to get an appointment with a local ENT to check out this bleeding ear situation.  But her next available appointment isn't until November 9th.  Grrrr.  So, I e-mailed her ENT in DC to ask him what he thinks about it.  I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school.  So, we'll see what he says and I'll go from there.

Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity.  My fingers are crossed!!!

Whew!  This has been a very long post!!!  If you're still reading this - you are a good person.

Thank you!

Sunday, August 21, 2011

Last day of Summer Camp

Friday was Harlie's last day of summer camp.  They invited family in at 11am for ice cream.  I found E's mom (the kid that told Harlie he loved her the other day) and told her that I heard her son was really good with my daughter.

She proceeded to tell me that E has challenges of his own and that he has Asperger's.  She then said that he is fascinated with all things science and he doesn't mean any malice.  Hmmm... I was just complimenting her son's behavior toward my daughter - the world malice never came to mind.

Then she continued with saying that ever since he got tubes in his ears that he thinks he's a Cyborg and since Harlie has a hearing aid, he thinks she is one, as well.  So, that's why he thinks they are best friends.

Cyborg.  Interesting.  But, frankly, I didn't care why he was nice to her - I was just glad he was.

Needless to say it was a strange conversation.  After she said "that's why he thinks they are best friends" I was speechless.  I wasn't sure if I was offended or not.  I can tell you that I kind of expected a simple "well, I'm glad they made friends" or something.  Heck, I was trying to give her and her son a compliment, and instead I think she just insulted my daughter!

So, let me get this straight - your son doesn't like my daughter because they're normal kids who just like each other - it's just because she is a science exhibit and a cyborg to him.  Thanks.  She really could have left well enough alone and let me think she was well liked and accepted by another.  But what good would that have served?  Seriously lady - learn how to accept a compliment and be nice to someone else yourself.  Really, it was almost as if she was saying, "look, don't get your hopes up - he only likes her because he's got some defects of his own." Even her body language was negative in nature.  Ugh.

So much for the positiveness from Thursday.  Oh boy.  Words don't describe how glad I am that Harlie doesn't know any of this!!!  And again, I find myself on that stupid roller coaster of emotions.

Later that afternoon, I took Murphy to Michael's to get some glue that was on Cooper's school supply list.  I said, "Murphy!  Come on, we're going to Michael's."  And he yelled down, "Who's Michael?"  haha

He didn't want to go, but I made him.  And when we got there, he was all wide-eyed and excited.  And a few minutes later he said, "This is the best store, EVER!"  Ahhh, so much to look at.  And have I really NEVER taken him there before?  I'm sure I must have.  At some point.  Certainly.  I'm sure of it.  Must have been years ago.  Oh well.

So, we're standing in line with people in front and behind us when we had this conversation:

Murphy:  Mommy, I don't think I want to be Snake Eyes for Halloween.  
Me:  Oh yea?  What do you want to be?
Murphy:  The Headless Horseman.
Me:  Okay.
Murphy (talking loudly and dramatically now):  But Daddy said in order for me to be the Headless Horseman, he'd have to chop off my head (with hand gestures, too).

Murphy, say it a little louder, I don't think child protective services heard you.

A few hours later, he informed me that he wants to be Dracula for Halloween.  And that we have to go back to the Halloween store to get him some new teeth (he was Dracula a few years ago) and he wants to get some rats this time.  Or maybe some rat eyeballs, so he can play tricks on people.

Then he said, "I feel like a dead zombie."


It's still August and he's already becoming Halloween obsessed.  Fabulous.

I tried to find my post from long ago about Murphy's fascination with all things Halloween.  Every week when his class went to the library he would come home with Halloween themed books.  All year long!  Even through the Christmas season!  I finally had to ask the school librarian to limit his Halloween books to one per week (instead of two) and to persuade him to select something else.

Well, with school starting in just a couple of weeks, I guess I should come up with a few ways to use Halloween as a motivator to get him to do what we want him to do.  I've already warned him that the mornings are going to be pre-tty crazy around here for a while.  We really need him to be responsible and do what he knows needs to be done without us having to ask him repeatedly.  So, I took a wipe board and wrote a list of things he needs to do when he wakes up (brush your teeth, go potty, get dressed, go downstairs, eat breakfast, put on shoes, get lunchbox, etc.) and can you believe that worked like a charm the very next day!

He's now earning (and occasionally losing) marbles in a small jar until it fills up.  When filled he can go pick out some Halloween stuff.

Maybe doing that stuff now will help us with school transitions.  Which, speaking of, I have some venting to do....  that post will be soon.

Also - since I was in a crummy mood about that other mom - those flowers were even more appreciated that day!  Talk about good timing!  Thank you again, whoever you are!


Friday, August 19, 2011

Thank You!

Today this flower arrangement was delivered to my door:

And here's the card:

Whoever you are.... thank you!!!  You made my day!

Thursday, August 18, 2011

Interesting day.

Today was a great day for Harlie at camp.  This camp was two weeks long, and the last day is tomorrow (Friday).  The kids and staff have been GREAT with her and I really feel that it has been a wonderful experience for her.  Yesterday (Wednesday) she was all hot to trot to get out of the house.  And it wasn't even 9am yet.  We had to keep on telling her we had to wait.

When I picked Brandy and Harlie up today, Brandy said she had a great day.  They had a "field trip" to the library, which is right next door.  Brandy got some video (which I still need to upload) of Harlie dancing the hula with some friends.  It was so cute to see her having fun with girls!!!  Yay!  She's socializing and having fun with her peers!  Hallelujah!

And another thing that I thought was funny - Harlie picked out her own outfit today (a dress).  And the two girls that she was dancing with have the same dress and have worn it to camp.  And they've commented that they have the same one.  I wonder if Harlie realizes it too, and wanted to wear it because of that.  Let's just go with that.  Because it would be pretty cool if she was influenced a little by her peers.  Maybe, just maybe that will happen with eating.

So, there is this one boy who apparently loves Harlie.  He sounds like he's a pretty funny kid.  One of the first days at camp, he went and sat next to Brandy and said, "So, what's new with you?"  So, today when the staff told him to do something (like, "E, eat your snack.") he said, "Wait! I just want to talk to Harlie's mom!"  He clearly thinks Brandy is her mom.

And then he said to Harlie, "I love you, Harlie.  Even though you held us up."  He was referring to how she was pretty slow walking to the library, even though she didn't technically hold them up.  Apparently he was waiting for her.

And then later he said, "I still love you and I'll always love you."  Oh, this kid is cracking me up!

Brandy said that there is another little boy that really likes Harlie, too.  Today one of them (E) was the line leader and the other boy was the caboose.  They both called Harlie to stand next to them in line.

I can tell you two things:

1.  I would never have guessed in a million years that she would have a boy telling her he loves her at this age.

2.  My heart swells at the thought that these kids have grown to love her over the period of two weeks.  I know how awesome she is - but I wasn't expecting for kids her age to realize it.  Tears of joy, my friends.  Tears of joy.

Tomorrow they are having an ice cream party during the last hour of camp and families are invited.  I can't wait to talk to these kids moms to tell them how great their kids are!

Then, in the afternoon, Harlie's new elementary school had an ice cream social for rising kindergartners. It was held in the gym so it was super loud.  Which meant that you couldn't hear Harlie's communication device.  And she wasn't feeling social, at all.  So, that was awkward.

And even though I got to hear how loved Harlie is earlier today - it was STILL so incredibly hard to see how other kids look at Harlie for the first time.  It's not that I blame them.  They've never seen a trach before - they have no idea what it is.  Her eye is probably something they notice pretty quickly.  They just need a moment to take her in - and I get that.  But it is STILL so hard to watch.  And I don't think she notices that yet.  How is she going to feel when she sees that reaction, too?   I am so afraid of what that will do to her.

Anyway, some moms organized a group of older elementary-aged kids to go around and introduce themselves (how cute is that?!) and it was really hard (emotionally for me, I mean) to have to tell them what she was "saying" since they couldn't hear the device.  I had to say, "She just said her name is Harlie."  And something about that just made me want to cry.

And then I met Harlie's teacher.  And tears started to well up - and I had to choke them down.  It was all just so real.  So scary.  And it breaks my heart that I don't know if she's excited about kindergarten or if she even knows what it is or that she's going there this year.  And I thought to myself - how many conversations am I going to have with this teacher (who is apparently super awesome - seriously, I've heard nothing but great things about how great of a teacher she is) and what are those conversations going to be like?  Good?  Bad?  Ugh.

I just can't believe that she's going to go to kindergarten and I can't believe that she's almost FIVE years old.  I have been thinking so much about the past five years and all that's happened.  All we've been through.  And all the people that we're going to meet that have no idea.  There's such a comfort with being around people who know - people who get her - and me - without me having to do anything.  And I just feel like we are so vulnerable now.  It's weird.  And scary.  And I guess I'm thankful that Harlie doesn't feel any of that yet.

I introduced Brandy to her teacher and we talked briefly about where to sit Harlie.  Her teacher told Brandy that they have a spot all ready for her (Brandy, I mean).  I can't remember if I told you or not - but this school has "pods" meaning that you walk through one door, into a big room - and off that room are the doors to the kindergarten classes.  So, if Harlie is sitting close to the front of the room, Brandy can be in the outer room - still able to hear and see her - but not be right on top of her.  And she said that she saw the book about Harlie (another post, sorry!) and it all just made me think about how much work and effort so many people have to put in for Harlie and for us.  I'm so thankful for all of you that go out of your way for us - but I can't help but wish that no one had to.

And then, a mom came up to me to introduce herself.  She said her son had introduced himself to Harlie earlier and that he went to her and told her there was a girl with a hearing aid, like his sister.  So, we started talking about her daughter's hearing issues - when the mom said that her daughter has Goldenhar Syndrome.  Whoa!  Say what????

Her daughter goes to the same school, but she's going into third grade.  Her daughter has the same ear as Harlie's left one and she wears a BAHA (bone anchored hearing aid).  But she's not trached and never was.  And she eats and talks.  I hope they get to meet!

Anyway, after less than an hour, Harlie was ready to go.  I think it might have been a little loud for her comfort.  And probably a little too socially overwhelming.

Well, that's it for now.  More later!

Tuesday, August 16, 2011


So, back MONTHS ago (like June, maybe?) I took Harlie and Murphy to the dentist.  There is a dentist that I LOVE (Dr. Bortell for you locals) who has an office at our "Children's Hospital".  I quote CH because for those of you not from here, you need to know that it is not a full service children's hospital.  It is an outpatient facility that offers a great feeding clinic, other therapies and long-term care for kids who are medically fragile and can't live at home.

Anyway, I took Harlie there because I thought Dr. Bortell would have more experience and exposure to kids with medical challenges.  And I really like her.  She's easy to talk to and she's good with the kids.  So, I went on ahead and switched Murphy to her, too.

Murphy had a good check up.  No cavities so far.  So that's good.

Harlie's check up always makes me nervous.  She goes every six months.  And I'm always bracing for news that a tooth has a cavity or that she's going to need dental surgery.   And if she gets a cavity, they would pull the tooth (due to her cardiac issues, they wouldn't risk it trying to save a baby tooth).  I know it's coming.  I just don't know when.  She has the same amount of teeth in half the jaw.  And I can't get the toothbrush to reach her back teeth on her left side.  Since her jaw isn't symmetrical, one side opens more than the other.

But, surprisingly, so far, so good!  After about two seconds of looking at her, Dr. Bortell told me that her top tooth is loose.  Hmmm.  Didn't know that.  She doesn't use her tongue much, so she isn't touching her teeth with it, wiggling it around like a normal kid would.  So it is going to take a lot longer to come out.  Of course it's the left front tooth.  I would rather the one on the right side come out first because that's the one that is surrounded by empty space.  Ugh.

And I think I forgot to tell you that her two bottom teeth (two of the ones that she lost during her spinal fusion surgery) have come in.  Which tells me that they were probably a little loose to begin with.  Not that I would have known of course.  That also means that she lost two teeth at four and a half years old, which I think sounds a little early to be losing baby teeth.  I think Murphy was already in Kindergarten and well into five years old when he lost his first one.

And, then she told me that Harlie is already getting her six year molars!  She said that kids with medical issues (especially syndromes, like Harlie) are usually delayed in dental development.  But, yet, she is ahead.  Ugh.  One area where I would LOVE for Harlie to be delayed and she's ahead.  Of course.  And she said that they are going to hurt.  She has no room in her mouth for these teeth!  So, for the first time in Harlie's life, she's putting her fingers in her mouth.  While it isn't good for obvious reasons - I think it's good for her oral motor movement.  So, I'm not stopping her.  I tried giving her a chew tube thing, but she wants nothing to do with that.  I'm guessing she feels more in control of her own fingers.  I don't remember Murphy ever complaining about his molars, but I guess hers hurt more because they're trying to squeeze in.

Okay, that's it for tonight.  I'll have another post tomorrow.

Monday, August 15, 2011

Eating and Talking

Hello.  Yes, I'm still alive.  It is so hard to finally break the silence after I haven't blogged in a while.  And when I don't blog it means I'm really busy, feeling crappy, or a little bit of both (sometimes a lot of both!).  And I suppose it's been a little of both this time.  I'm trying to enjoy the summer - but, frankly, have been too busy to do that.  And I think I'm tired of thinking about Harlie starting kindergarten.  

The whole eating by mouth thing is REALLY stressing me out.  I don't see how in the world Brandy is going to be able to feed her by mouth at school - or at least in the cafeteria at the same time as her classmates.  Harlie has decided to go through another very uncooperative phase in eating.  It is so frustrating.  I don't understand what makes her do this.  You would think after YEARS of this that she would realize that we aren't giving up.  She isn't going to win.  And the food will get in her tummy one way or another - so just eat it already!!!!   Ugh.  

There is a small sliver of hope that she will be in a setting with kids eating and she will want to eat, too.  But, I don't think that's going to happen.  She has been in a setting like that to a smaller degree and it didn't have any affect on her at all.  She doesn't WANT to eat by mouth.  Period.  And trust me when I say that there are days I don't WANT to feed her by mouth, either.

When she is uncooperative (like she's been lately), feeding her in the cafeteria is not going to work.  Not without completely making her look just awful to her classmates.  And the thought of them seeing her like that makes me ill.  So that means that Brandy will have to feed her elsewhere.  And thinking about it just makes my heart hurt.  And it makes me wish that her jaw didn't form the way it did.  It created such a horrible chain reaction.  And I hate thinking like that.  It's such a waste of time and energy.   She was born with these challenges and that's just the way it is.  Wishing it away is pointless.  But sometimes my thoughts go there, and I have to shake my head and make them go away.  I do wish things were different.  

On occasion she'll have a great day, and she'll willingly go get a bib and then willingly get in her high chair.  (oh, how I hate writing all that when she's almost FIVE years old!)  I get all hopeful that she's hungry and she realizes that feeling and has finally learned that eating food alleviates the discomfort of hunger.  But then she won't do it again for weeks.  

And on Friday I spent all day (literally all day) in the kitchen making her food and pureeing it.  I was in there so long that my legs were tired and sore.  And then I remembered that I was going to run 12 miles the next morning.  Ugh!!  Talk about poor planning!  And all for a girl that hates to eat!!!  

Luckily, Saturday was a cool day and what a difference 10 degrees makes!  It ended up being my best run so far!  

So, Kinder Camp is going well.  Harlie seems to like it.  The kids have been really good and accepting of her.  And what really surprised me is how concerned they are about her.  They have asked Brandy a lot of questions and want to know that she doesn't hurt and that she'll be okay one day.  One little boy asked her if Harlie would die if she didn't have that thing in her neck.  Brandy said that she told him that she needs it to breathe, and let him come to his own conclusions.

They have snack time while there, but that is so close to Harlie's breakfast there is no way that she would eat then.  So, she just does something else.  One of the kids asked Brandy why she doesn't eat a snack like they do.  Brandy just told him that she doesn't like snacks.  They also want to know if she'll ever be able to talk.  

Last week Harlie's speech therapist went to camp and worked with her there, focusing on using her device to talk to the other kids.  It appears that Harlie thinks that a lot of communication (verbal, I mean) is unnecessary.  She probably thinks, why do I have to ask you for a paint brush, when we are doing a painting activity?  Isn't it obvious that I need a paintbrush?  And paint?  And paper?  

We say so many words because speaking is easy.  But, signing and using a communication device is not easy.  It's not natural.  And it takes thought and effort.  So, during the painting activity she came to the conclusion that painting wasn't worth all the work of having to use the device.  So, she quit.  

I will say that she is making a lot of progress.  She willingly went to the device (when Brandy and I were in the middle of a conversation) and said, "Brandy, I want to watch tv."  I think that is huge.  I have so much more to tell you about the device, but can't go into it now.  I have to go to sleep since I have to run early in the morning.  

More soon!

Monday, August 8, 2011

Kinder Camp

This past weekend Tom and I went OUT OF TOWN - with NO kids!  Crazy stuff!  We went to Pittsburgh for Tom's 20th reunion.  I have some pictures.  But, will have to post them later.  So, I'll save that whole post for tomorrow.

Right now I want to tell you about today.

You might remember back a few months ago, Jennifer and I camped out in 30 degree temperatures to get Harlie and her daughter into a 2-week camp through our county.  Well, today was the first day.  And I vaguely remember when we were sitting there registering her for camp (frozen from the night's camp-out) seeing a question on the form about special needs or disabilities.  I don't remember what I checked.  But I do remember (I'm really not making myself look good here) thinking (okay - being afraid) that if I wrote too much about her that they wouldn't let her attend camp.  Which, is a really stupid thing to think when dealing with the county, considering they can't discriminate.  But that's what I thought.  And still thought in the back of my mind this morning on our way there.  I was actually a tad bit nervous to tell you the truth.

But, the dropping off actually went a little better than I expected.  Harlie went and sat on the carpet to play with puzzles with the other kids.  And I completed some form about who can pick her up (which totally doesn't apply when your nurse is with you, but whatever).  When I was done I went over to Harlie and told her (and signed) to have fun.  A camp staff person came over and sat down in front of Harlie and asked me how to sign "hi".  So cute.  I told her she could just wave and tell her.  I also explained that she can hear her, she just can't talk.  Then I put Harlie's communication device in front of her and asked her to tell the counselor her name.  Of course to make her do it, I had to take away the puzzle she was playing with.  It seems we do a lot of "bribing" to get her to cooperate.  But, she did.  The class was a bit loud, so it was hard to hear her device over everything.  Which reminds me, I have a TON to tell you about the device and what's going on with that.  But that will have to be in a separate post.

Anyway, I was pretty impressed that the camp counselor immediately took an interest in Harlie and wanted to communicate with her.  It was also cute that as soon as I put her device in front of her a few kids came over and sat down to see what that was all about.  Another perk to the device - kids might be more interested in her and less afraid.

Then I told her and another counselor that Brandy was there and would be staying for her medical needs, so please treat her as they would any other child.  Then I left.

So, back when I was filling out that form about who can pick her up, I heard some bits of a conversation going on behind me.  A counselor was trying to call her supervisor.  Someone wanted to ask the counselor something and she replied that she needed to call her supervisor immediately.  This was before I went over to Harlie on the carpet.  And before I had a chance to talk to a counselor at all.  And in the back of my mind I wondered if the counselor was calling her supervisor because of Harlie.  I can only imagine what they were thinking.

Anyway, so I pick them up and all went well.  Brandy said they asked a lot of questions.  Harlie played just fine and didn't push or hit anyone.  Small victories.  Although she refused to participate in Musical Chairs.  I don't know if she's ever played, or not.  But she preferred to go look at a book quietly to herself.

A few hours later I got a call from the supervisor.  Needless to say, I wasn't surprised.   And for a second I felt like I was in trouble and what if she was going to tell me to not bring her back?  But, she was really nice and asked me what they could do to make this experience better for Harlie.  Wow.  Now that surprised me.  To be honest, I couldn't really answer her question.  Because I don't know.  I just want her to have a good time and be like a regular kid.  Then she told me that I could have requested a therapeutic assistant for her and they would have provided someone to be one-on-one with her and help her with whatever she needed, like communication. But, I didn't know that.  So, it's too late.  Oh well.

The supervisor also said that she spoke with the counselors after camp today and they said that Harlie participated just fine in most activities.  So that's good.  Then she said that she is going to come to camp tomorrow to observe and see if she can think of anything that would help her.

I started to be a little upset with myself that I didn't look into help for her, but then I realized that I signed her up in March for the camp, and that was before this whole "intensive speech therapy on the device" thing.  So, I wouldn't have thought of it then anyway.  But, it would have been so cool to have someone who could go around with her making her talk on her talker.  What a great environment to do that in, considering it's so similar to school.

So, we'll see how tomorrow goes.  Now I'm kinda anxious to see what the supervisor thinks.  Okay, must stop writing tonight.  I am totally falling asleep.  And won't proof it, so forgive my mistakes and/or typos!  Thanks!

More tomorrow!  Thanks for reading!

Wednesday, August 3, 2011

Murphy Update

So, I have not told you about Murphy's doctor's appointment, like two months ago.  Since he's on medication for ADD, he has to be seen regularly by his pediatrician.  As you may already know, the medication for ADD or ADHD is a stimulant, and the main side effect is a major loss of appetite.  This is no joke.  Getting him to eat while on meds is a struggle.  And it was really obvious when they told me that he lost TWO pounds since January!!!

And, at the time, he was really struggling in swim practice.  Honestly, he was eating so little, that I wondered if his body had enough energy to even make it across the pool!

So, his doc and I discussed things and we decided to take him off his meds for the summer.  By the very next day he was eating a considerable amount more than before.  And I heard the words I had not heard in over six months, "I'm hungry, Mommy."  And the very next week he made it across the pool without touching the rope.

Hopefully, he will gain his weight back, and then some, by the start of school (right after Labor Day).  Then, I'm guessing we'll have to put him back on his meds.

Oh, and I have done something I thought I would never be able to do - I have already FINISHED back to school shopping!  EARLY!!!  This year, all three kids had a supply list.  So many supplies, so little time.  But, I am ALL DONE!  Woohoo!

Okay, that's it for tonight.  I am falling asleep as I type.  Goodnight!