Friday, July 29, 2011

Quick Update

So, that swollen eye that Cooper was sporting yesterday?  Pink eye.  Our doc called in drops and he's already much better.  No residual effects from the bloody nose, so that's good.

And you might remember me telling you about our lost photos and videos?  I've been holding my breath and praying (yes, praying!) that the second data recovery company could work some miracles and save our memories.  The thought of NEVER seeing those pictures or videos again was too much!!

Well, we heard from the company and they SAVED our data!!!!  Oh thank you, thank you, thank you Great Data Recovery People!!!  Of course it cost us over $1,100.  But, just between me and you - I would have gone in debt and paid way more than that if I had to.  They put all our data on a hard drive and it is in route to us as we speak.  We should have it sometime next week.  Ahhhh, I can now breathe again.

And you might remember me mentioning that Harlie's hearing impaired teacher and I were going to work on a book all about Harlie for her kindergarten class.  Well, I am very happy to report that she has been working very hard on the book and it should be done and ordered sometime next week!  It is so cute!  I can't wait to show it to you.

Well, I've started some more posts, but haven't been able to finish them.  I hope to have a couple done this weekend.  I am running 10 miles early in the am, so I must go and get some sleep!  I swear this summer is way hotter than it was last summer.  The heat has been miserable to run in!  But, oddly enough... I still love it!  I really do.  I think I might be insane.

Have a great weekend!

ps - Thanks for all your wonderful comments to yesterday's post!  I love having you in our corner!!!

Thursday, July 28, 2011

CT Scan and a Video

Today's CT scan went beautifully!  And for the first time, she was able to do it with NO anesthesia!!!  How exciting!

When I took the exit off the interstate and she saw the parking deck to the right, she started to cry/whimper.  I told her that it wouldn't hurt if she could stay still.  That's all we said to her, over and over again.  It's hard to tell if she understands something like that.

The anesthesia folks came to talk to me when we got there and I told them I wanted to try it without anesthesia first.  So, a nurse came to get us and told us that they were going to take us to the fastest machine they have.  She only had to stay still for about 15 seconds, I'm thinking.  And she seems to understand that for x-rays, so I thought maybe she could do it.

Before I put her on the table I kneeled down and told her that if she could stay still when I told her to, that it wouldn't hurt.  She didn't cry at all.  In fact, she didn't even seem scared!  That amazes me.  After all she's been through!!!  If anyone has the right to be freakishly scared at a hospital - it's her.  She's so darn brave it kills me!

So, we put her on the table and the nurse wrapped her like a burrito - and Harlie didn't protest one little bit!!!  Look at my big brave girl...

They put a lead apron on me and I stood right next to her.  When the nurse told me they were about to start imaging, I signed (I had to take Harlie's hearing aid out for the scan) for her to hold still and not to move.  And Voila!  She did it on the first try!!!  She had to lay there for a few minutes more to make sure that the images were good and that there was no motion in them.  I will go back in a few days to pick up the discs with the images and radiologist's report.  Then, we'll start to work on getting some surgical opinions.

Our appointment was scheduled for 12:30pm and we got there at 12:00pm.  It took a while to take us, but I'm thinking it was close to 12:30.  I was back in my car and exiting the parking at 12:47pm!!!!

What a great experience!  And every time we have a great medical/hospital experience, we are making big strides in Harlie's fear, comfort and trust.   I am hoping that she will start to trust me that when I say it won't hurt - that it won't hurt.  And when the time comes, and I have to tell her that it will hurt, but it will be quick if she cooperates, maybe, just maybe she will understand.

I can already tell a big difference in just a few months (before spinal fusion).  She used to refuse to let the admitting person put a hospital bracelet on her.  I would have to hold her down so they could get it on.  To her, that meant that she was staying and she wanted nothing to do with that.  Well, today, I asked her to stand up and let her put the bracelet on.  And she stood right up and held out her arm - no problemo!  Oh, it really is the little things in life!!!

Later on in the evening, Cooper got a bloody nose (accidental friend's head to Cooper's face).  He also must have gotten something in his eye while playing outside, because his right eye was starting to swell before the incident.  And that head butt didn't help matters.  So, we'll see what he looks like in the morning.

Then, after that, Harlie was watching one of her current favorite you tube videos.  Seriously - kids and electronics are totally out of control.  I don't know how she found this guy, but she did.

And this was her tonight...

I totally love it.  More than words can say.


Wednesday, July 27, 2011

CT Scan

So, Harlie has a CT scan tomorrow of her head and neck.  I never got a chance to blog about an appointment we had with a craniofacial plastic surgeon here in Richmond back in June.

After a lot of consideration, I've decided to get this CT scan here in town in preparation of her next jaw reconstruction.  I have no idea when or where that will be.  But at this point, I feel that I owe it to Harlie to do some more looking around to make sure that we are making the best decision possible when we go into surgery again.  After two reconstructions with the same surgeon, and being no closer to decannulation (getting the trach out) I need to look.  We might end up sticking with her surgeon - but - I need to feel really good about this decision.  I don't know how many more I can put her through.

I've gotten some names from her ENT in DC.  They are docs that do the rarest of the rare cases.  They are in California and Florida.  However, when looking around - I also have to consider her cardiac status - and the surgeon's hospital's ability to care for complex congenital heart defects.  Not an easy task, trust me.

So, we'll see what happens.  She hasn't had a CT scan of her head and neck since 2008 - before her two jaw reconstructions.  I'm sure her jaw is a mangled mess, full of screws and pieces of bone.  Ugh.

Anyway, that's tomorrow.  I have so much more to write, but no time now.  I'll fill you in after the CT scan.


Friday, July 22, 2011

No more swim practice!

Wow.  It has been a long time since I blogged!  Now I have WAY too much to catch up on.

The past two weeks have been brutally busy.  Harlie's been going to summer school four days a week, and she's had therapy sessions FIVE days a week!  For two weeks!  I think I might be more tired than she is!  Well, I have been running (training for the marathon) so I'm sure that has something to do with my current exhaustion.  And tomorrow morning we will run nine miles.  In this current heat wave.  Good times!

I have to be quick - but thought I would share a funny thing from Murphy's LAST swim meet on Monday night.  They had a different theme for each meet.  And they encourage people to dress up in costume.  We didn't pay any attention to this for the first five meets.  But for the last one, Murphy said he wanted to dress up.  Sure.  Whatever.  Just get in the car, already.

Since I'm so terrible at reading my e-mails (that's really because I have had NO time to be on the computer) I didn't see that the theme was Athlete or Mathlete.

And Murphy dressed up as a....


(insert soundtrack of me laughing hysterically here)

Seriously.  I couldn't stop laughing.  Everyone else was dressed as an athlete or a geek.  And Murphy was a pirate.  Ahhh, you gotta love that he's his own person.  And I don't think he noticed that he didn't quite fit in.  Even when they had this "parade" around the pool.  I wasn't quick enough with my camera for that one.  It's a shame too, because it was HYSTERICAL!

Anyway,  I'm glad that swim team is over for now.  One less thing.  To be replaced with something else.

And since Murphy will probably never read this, I'm going to show you some pictures of him "diving" in for his 25m Freestyle.

Looking good so far.

Mmmm, not really looking like a dive.

Nope.  Definitely not a dive.
At least we are very clear about the areas he needs to work on.

Regardless, he finishes with a smile! Love that!
That night they had a parent/coach relay race.  So, Tom swam in that.  It was really fun.  They had three 4-person parent teams from each swim team and one 4-person coach team from each swim team.  Unfortunately, the other team didn't want to swim 50m, so it was confusing to watch.  If they had done a 50m relay, all swimmers would start and finish at the same end of the pool.  So, we could have stood on the opposite side and watched all the swimmers.  But since it was a 25m relay, swimmers had to be on both sides of the pool.  This made it impossible to watch or to see who won.  But, they all had fun anyway.

The two swimmers of the evening.

Boys having fun!
All in all, I feel that swim team was successful.  He worked through his fears, never complained about going (even when he was terrified!), stopped touching the rope, was part of a team, and had a great time.    

More later!


Tuesday, July 12, 2011

Vantage Lite vs. Springboard Lite and all our pictures/videos!

Since getting the Vantage Lite, I've really been torn over the decision on which device to commit.  I know it may have seemed like it was an easy decision.  But, I forgot that the deciding factor a couple of years ago when we were trying to figure out which one to buy - was that the Vantage Lite sounds like a computer talking and the Springboard Lite sounds like a little kid talking.

Keep in mind that at the time we were making the decision over which device to purchase, her second jaw reconstruction surgery was scheduled (December of 2009).  And we were hopeful that it would be successful and that decannulation would happen in the next year or two.  That would allow her to learn to speak more clearly and maybe, with any luck, she would be more verbal by the time she outgrew the Springboard Lite.

The Springboard Lite is smaller and weighs less (2 lbs. 8 oz.) vs. the Vantage Lite (3 lbs. 6 oz.).  We wanted her to be able to carry it around herself.  And she was so tiny two years ago!

But, ultimately, when it came down to it, we did not like the computer speak at all.  And the voice of the device was going to be her voice - so it should sound more like what she would sound like - at least more like a kid.  Plus, the kid's voice was way more clear, whereas the computer speak sounds muffled.  Which makes me wonder if she can hear/understand it herself with her hearing impairment.  

And now, almost two years later, we're back to making the same decision again.  Except this time I know her jaw surgery was not successful and there's no telling what the future holds as far as that goes.  Certainly the possibility of a future decannulation should not be a factor.  I need to think long term use here (as sad as that makes me).

And with that said - the Vantage Lite is definitely the way to go.  Just the other day, we were in the car on our way to the pool and she typed - I am go swimming.  Which, had there been an option for "going" we would teach her that.  But, it isn't.  And in just a few short weeks of intensive speech therapy, she's outgrown the Springboard Lite as far as proper language development goes.

However, nothing is ever easy.  And I can't believe how attached we've become to her little purple Springboard Lite and the cute little kid voice that's in there (and Murphy's voice, too, since he recorded a lot of the words).  I can't help but associate those voices with Harlie.  They were - are - Harlie's voice and have been for almost two years.  And I'm sad.  I don't want those voices to go away.  I don't want to lose those voices to unemotional computer speak!!!!   And I don't want unemotional computer speak to be Harlie's voice!!!


And to make matters worse - today in speech therapy while working on the Vantage Lite, Harlie asked for her purple device (signed "purple").  Oh, how heartbreaking.  And as hard as it was, her ST kept her focused on the Vantage and it didn't take very long for her to learn how to tell her ST that she wanted to play with the barn and horse.

I wish I didn't have to make choices like this.  Ultimately it comes down to a terrible voice for Harlie or giving her a device that will grow with her brain.  Because as one of our ST's said, we will ultimately be giving Harlie another handicap by limiting what we teach her (or something like that).

And I know that I should thank my lucky stars that Harlie can have a voice at all.  And I am.   I truly am so thankful for all that she can do.  And how flexible she has been with having to learn so many different ways to communicate (sign language, PECS, Go Talk, verbal, Springboard Lite and now the Vantage Lite).  But we can't always control how we feel.  And I feel sad that her voice is going to have to change.  As has her face.  Twice.

But I have to do what's best for her - and not base my decisions on how I feel.  Oh, how hard that is!!!  And it makes me mad that so many moms can make decisions on how they feel and it not be detrimental to their children.  Whereas if I were to do that with Harlie, it would certainly have negative consequences on her and her development.

But, Harlie deserves the very best I can give her.  Ultimately, I think it will be harder for me to get over the loss of that voice, than her.  And that's the way it should be.

To add to the emotional downs of the day...

The past few weeks have had me holding my breath.  About a month or so ago, we got an external hard drive or storage thingy for our computer.  My Mac was full as far as photo/video storage went.  So, Tom bought this thing and put all of our photos/videos on it.  ALL of our memories.

And then one night when I was blogging, I hooked the device in and my computer didn't see it.  After Tom trying all he could, he sent it to a company to try to recover the data.  ALL of our memories.  I've been holding my breath, hoping that they would recover it - because the thought of losing all of our memories is honestly, too much to bear.  Seriously, I don't know how I'd deal.

Today we got a message from the company that basically said they could not recover the data because there seems to be some physical anomaly or something with the drive.  So, they need to send it to another company who specializes in that and maybe they can retrieve the data.  The cost will increase dramatically.  Not that it matters, really, when it comes to your priceless memories, the last 10 years of our life.

So, I'll remain holding my breath, hoping and praying that they can save our memories.  Sometimes, I don't know how I get through the day.

Hopefully, I'll have a better post for you next time.  Thanks for reading!

Friday, July 8, 2011

Communication Device Update

Wow.  Blogging really pays!  As it turns out an awesome person (who I haven't met yet) read this blog post about my wanting a Vantage Lite for Harlie.

And HOLY COW I now have a Vantage Lite in my house!!!  How crazy is that?  I can't wait till next week, when I get to talk to our therapists about it!  They are going to be so excited!!!

As it turns out, our county has a few for students to use.  And this person knew that and got her hands on one for us!  I just can't believe it.  Seriously.  We are so, so lucky!!!  Thank you so much, Ms. R.!!!!

And speech therapy for the device is going great!  Harlie is really making some fast progress.  Here are some examples:

I told her the other day that it was time to eat.  She went and got her device and said, "Mommy, I want to cry."  That funny little girl!  No, she doesn't particularly enjoy eating orally (sometimes she down right HATES it) but, in this instance, she was being funny.  Like a sense of humor, funny.  And she knew it.  I pressed the button for laugh (like, I want to laugh) and then she touched the button for cry.  This went back and forth a few times and we were both laughing the whole time.  And then she ate her meal.  Life is good!

Last weekend I took her with me to run some errands.  We went to Target first.  Partly because it had been about 2 weeks since I was there last and I needed to see the store.  You know, just needed to see it?  But I also needed a few things.  Not wanted.  Needed.  While there, Harlie dropped a toy she was holding that she brought from home (a Lego DOG - ahem - attached to a leash that Murphy made).  I grabbed her device and added a button for "dropped" under the Verbs menu.  I then showed her where it was and how to put it in a sentence - "Mommy, I dropped my dog."  Then I had her clear it and put the sentence together herself.  Which she did, with no problem.  Then I picked up the dog and she was happy and we continued shopping.

Then we went to the ABC Store (liquor store for those of you outside Virginia).  A much needed stop, as you can imagine.  hehe

After that, we went to the grocery store.  Then, we got back in the car again - and finally worked our way home.  On the way, while in the car, Harlie dropped her dog.  Instead of yelling and pointing and making me turn around (while driving - SO stressful!) to try to figure out what she was trying to tell me - she immediately grabbed her device and said, "Mommy, I dropped my dog."

Isn't that AMAZING?!  I showed her ONE time!  And since I knew what she wanted to tell me, I could acknowledge it (said oh no, you dropped your dog? I'm so sorry, but I'm driving and can't get it for you.) - and she knew I knew and so she was fine.  How awesome is that???  For real!

Another thing - during speech therapy the other day, Amy wanted Harlie to be able to say "that's funny!"  So, she asked me if it was on there already and I said I didn't think so.  She looked under the Social menu, and it wasn't there.  We thought that would be a good place for it, so she added it.  Then she showed Harlie.  She cleared it and wanted Harlie to say it by herself.  Harlie then built her sentence and used a different "funny" button.  It was my voice.  And then I realized that I had added that button forever ago - under Feelings.  And Harlie knew that.  FOREVER ago!  And she showed Amy that it was already there.  Crazy.

The only negative to the device is that it is slow - meaning slower than her thinking.  And to teach her something on it - takes stopping the moment, and fiddling with the device.  And in speech therapy it is a challenge to keep up with her.  While her ST is trying to add something to the device to teach her how to say something, Harlie moves on to something else.  Harlie isn't patient and doesn't want to wait.

And I need to video how fast Harlie's fingers go on that thing.  She could compete with a teenage texter! This is only after a couple of weeks!  I can't imagine what she'll be like in a few months!

And she's using it in summer school, too.  So, things are going great.  Nothing is better than verbal communication - but when that's not an option - I am so, so thankful they make this device.  It is a true life changer!!!  I can't wait to see what else she's going to say!


Tuesday, July 5, 2011

Murphy's 4th Swim Meet...

... was a success!!!  

We are SO proud of him!  And relieved.  But more proud.  And he even swam in two events - the 25m Freestyle and 25m Backstroke.  Woohoo!!!  

This morning at swim practice he touched that stupid rope.  Like several times.  So, after his practice was over, I made him swim one more lap and told him he couldn't stop swimming until he made it across without touching anything.  He did it just fine the first time.  I just wanted him to end his last practice before the meet in a positive way.  

I forgot that Tom was timing the first half of the meet, which left me with the kids by myself.  It was fine.  I packed lots of toys for them.  The only real problem was that it was so stinking HOT and there was no shade.  Once the sun went down over the rooftop, it was much, much better.  

Tom timing.

Murphy getting a pep talk from the coach before 25m Freestyle.

Murphy swimming.
He didn't touch the rope!!!  He came in last in his heat, but he didn't touch the rope!!!  We were cheering for him and it was so great!!!   My friend Niki came up to cheer him on, too and took this picture of us...

Murphy and me right after the 25m Freestyle.
Thanks, Niki!

Zach and Murphy.

Our camp.  It was SO crowded.
25m Backstroke.  No touches!!!  YAY!
 He was thrilled with himself.  And he had so much fun tonight playing with his teammates.  During the last meet he sat with us, in a crummy mood (you know, arms crossed, head down, frown-y face?).  Tonight was the complete opposite.

Our goals for him on swim team were for him to have fun, feel a part of something bigger than himself, and to gain some self-confidence.  All were achieved tonight.  There are two more swim meets this season.  I'm anxious to see how things go the next few weeks.

On another note - Harlie started summer school this morning.  It was a rough morning around here.  She was very confused on why we were rushing her through her normal slow wake-up process.  This fall is going to be interesting...

More soon!


Friday, July 1, 2011

The Library

This guy looks pretty sweet, doesn't he?

Well, don't let that cute little face fool you.  This incredibly affectionate and funny little kid can be a monster.

Today I took Murphy and Cooper to the library.  You know, trying to be a good mom, wanting to promote summer reading and learning.  Murphy was fine.  Cooper, however, was not.

Cooper ran around like he had never before seen the light of day.  He stayed in one place all of about 4.5 seconds before moving on to the next thing.  He picked up books from the shelves, studied the cover for a few seconds and then dropped it on the floor so he could move on to the next one.

Before going, I looked up some books I wanted to get for Murphy.  I wanted to get some small chapter books that he could read by himself, and a more difficult one for me to read to him.  So, I had my list and needed to go find them.  This proved to be almost impossible.  I say almost because I think I did actually accomplish my goal (they only had one of the eight books I wrote down), but at the expense of my dignity.

It was all over when Cooper found the computers.

I did my best at trying to distract him with puzzles and books, etc.  I tried to gently ease him away from the computers.  I tried to check out a handful of books as quickly as possible - all while hearing him doing who knows what around the corner.  I'm sure he was jumping on the couches or something.  He was making so much noise that a librarian got up to go see what was going on.

All I remember thinking was "stay calm, you're in a public place."  I honestly did the best I could and our stay was as brief as humanly possible.  And when I tried to get Cooper to leave, he let out the worst, high-pitched, blood curdling scream you've ever heard.  Of course, I hear that scream on a fairly regular basis - more than I'd like to admit.  However, to the untrained ear, it is awfully scary and painful.


I could feel all the stares and I knew that at that very moment, I was being judged.  I hope a few felt pity for me.  Because I sure as hell felt sorry for myself.

At the time I thought I would never take him to the library again.  But, hours later, I'm thinking that maybe the right answer would be to take just Cooper - with no lists of books to look for - and just concentrate on his behavior.  Maybe after a few trips like that, he'll learn how he's supposed to behave.  Hope is a beautiful thing, isn't it?

Looking back, I am reminded of a similar experience with him... anyone remember this Gymnastics post?

So, after successfully removing my screaming child from the library (which took super human strength since he's heavy and was completely uncooperative) I drove home more angry than I have been in a long time.  I must have done something pretty bad in a prior life.  When we were home I gave Murphy one of the books.  To which he replied, "No thanks, Mom, I'd rather watch Spongebob."


Worth all the humiliation?  No.  Not even close.

At this point, I'm just glad the day is over.  It would have been better if I could have made myself a nice drink after the kids were in bed.  Or immediately after the aforementioned embarrassing event.  But, I'm running 7 miles in the morning.  So, it's off limits until tomorrow.  So, I'll be packing it in the car so I can have some immediately after my run.  Kidding.  Seriously just kidding.  I'll wait till I get home.


Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...