Someone tell me she isn't a hoarder.

Life.is.too.busy.

But, I want to explain more about something I mentioned in my last post.  A while ago (couple of months ago maybe?) I was trying to clean up the many toys that invaded our living space.  I noticed that I kept on having to pick up this particular toy, which was always in many pieces scattered about.  It could only be played with when it was put together.  And it wasn't something the kids could put together themselves.  After many assembles by me, I noticed that I was missing more and more pieces that made it sturdy.  Then I saw a support column that had been chewed by Rooney.  Then I noticed another column in another room, separate from most of the other pieces.  Well, I broke.  I couldn't take it anymore.  Yes, it was Harlie's birthday present.  And I feel bad about that.  But, clearly it could no longer be played with and no one was asking me to build it anymore.  So, I threw all the pieces in a plastic grocery bag, fully intending to throw it away.  But, I couldn't do it.  So, I left the bag in the toy bin.  For like several weeks.  And no one ever opened it or asked about it.

So, I finally threw it away.

Weeks, maybe months passed.  And "we" (meaning "me") were cleaning up the kids' rooms.  Harlie found a support column to the toy that was long gone.  She grabbed it with enthusiasm and held it up proudly.  Then she bolted out the door.  Ugh.  She was going to go put it in that bag.  It was probably the reason why the damn toy wouldn't stay together.  Of course the bag was long gone.

It was only a couple of minutes before she returned, sobbing, face all splotchy.  I looked at her and told her I was sorry.  And I meant it.  But, there's only so much I can take!  These kids have to learn to respect their things and put them away.  Right?  Anyway, she looked at me and said, "Mama, I want to love you."  huh?  Want to love me?  Well, maybe she's saying something else.  So, I said, "I love you, too."  Then she repeated, "No, I want to love you."  "Well, you can love me," I said.  She said it again.  I sat down in front of her and said, "Harlie are you saying you're mad at me?"  And she said, "Yeah."  Since she can't pronounce the "s" sound, she says "yeah" instead of "yes."

I've always known how important communication was.  And how infinitely more difficult life is with an impaired version of it.  But, in the past, it's always been about communicating her wants and needs.  Now, we're getting into her feelings.  And isn't it often difficult for kids to understand their own feelings - even when they can communicate just fine?  The thought of her having so many feelings, desires, protests, observations, etc. stuck in her head makes me feel so heavy.  It must be so hard to be her, to be so often misunderstood.

Somehow, we got through the moment.  Thank God I made the connection (and I can only hope I was right) and it gave her a way to tell me what she was thinking.  I told her that she was getting to be a big girl and she was going to have to be more responsible for her things.  I went on to explain that I can't keep cleaning up after everybody and that isn't fair to me.  She actually seemed to understand what I was saying.  I gave her a bath to help her calm down and she seemed fine after that.

But something about that moment changed her.  She tells me she loves me all the time now.  Like dozens of times per day.  And she hugs me, spontaneously, for no reason.  If I get upset at the boys, she starts crying and says, "But Mama, I love you."  It's so crazy.  One night I was mad at the boys for acting like animals out in public and I was expressing my displeasure (yelling at them).  When Harlie started to cry and said, "But Mama, I love you."  Murphy said, "Mom, you're going to have to yell at us away from Harlie from now on."

There was a clock in her room and we don't know what happened to it.  Can't find it.  She will not stop asking me about it.  She looks at me with suspicion now.  She thinks I threw it away.  And I might have.  I've never claimed to be sane all the time, and I do make bad decisions sometimes.  But, her room is packed with stuff.  There's a big fight going on in there between her medical stuff and her kid stuff.  So, who knows what happened in the heat of the moment?  We are going to give her room a major overhaul soon.  Because I just can't take it anymore.  The girl needs some space that she likes, that isn't overrun by crappy medical supplies and equipment.

Anyway, the other day I brought down my summer clothes and put my winter clothes in bins.  While doing that, Harlie came into my room, watched me put some clothes in a bin and started crying.  I thought maybe she thought that I was leaving or something.  So, I assured her I wasn't and did my best to explain what I was doing.  After that she looked at me and said, "Mama, you're mad at me."  Which, of course I wasn't!  At least not at that moment. Then she said, "Where flower clock?"  Oh my gosh.  I really don't know what's going on with her.  Literally, this whole crying thing lasted for an hour and a half!  I finally broke down and said, "Harlie, if I can't find your flower clock, I will go buy you a new one, okay?"  She smiled, and stopped crying.

Now, please understand that I am not necessarily proud of that parenting choice.  And it's certainly not one I would make for the boys.  But, in this case, I just couldn't take it anymore.  Sometimes you gotta do what you gotta do.

She's clearly having issues with letting things go.  Or not having control over her things.  I don't know.  I just pray that she's not a hoarder.  Seriously, these are the things that she has lost it over:

Old pajamas that she finally outgrew (size 5!)
Rooney's toys that get holes in them and have to be thrown away (that was a whole big thing, too!  I had to take her to the pet store to get a new toy for him.  And they didn't have the exact one, so I just grabbed another, but that wasn't good enough.  She left the store crying because she wanted to get him a new blue dog toy.  She picked his blue dog out of the trash and I ended up pulling all of the stuffing out so he could keep it.  Oh, the things we do to try and bring peace into our lives...)
An old kiddie pool that was behind the shed (she's still asking for a new one).
The flower clock.
Her winter pajamas that she will most likely be able to wear next winter.  I had to put those in a clear bin in her closet so she could see them.
A snake sprinkler that we had years ago?  I can't even remember.  I don't know how she did.  I don't remember what happened to it (but I'm betting I threw it away).  She wants a new one of that, too.
And last, but not least, the backyard play set, which Tom demolished.

I have to admit, this one hurt a little.  I was upstairs when Harlie walked up to me, sobbing.  She grabbed my hand and brought me over to the window and pointed at Tom taking down the play set.  It's been our plan for a while to take it down.  The kids really didn't play on it.  The only thing they ever did was swing.  So, Tom put a board up between two trees and hung the swings on that.  Even though I knew it was time, it still stung.  I guess because it was time.  I'm not one to get particularly sentimental with the kids growing up.  I think I have a very different perspective and appreciation for all the "normal" things they are doing.  The alternative to them growing up and maturing isn't a good one, so it's not something I think I should be sad about.

However, we are entering a new phase and leaving behind our baby years for good.  And there is a touch of sadness to that, I admit.  We moved into this house when Murphy was two and I was pregnant with Harlie.  I remember being so happy to have it in the backyard for him.  And he will turn 11 on Monday!  But, there are so many good experiences ahead of us.  And the new backyard is going to be better and more fun for ALL of us to enjoy.  So, I told Harlie all of the things that she's going to love about the new backyard, and she seemed to be okay.

A few days later, the kids were playing in the yard when Harlie took a flower and put it where the play set used to be...

Murphy asked her why she did that and she said, "Daddy killed it." She tried to act all serious and mournful, but then started laughing.  So, I think she's fine now. And she loves the new swing!

That smile tells me she's okay letting go of the play set.

Tom's new happy place. And Harlie's, too.  She loves to roast marshmallows
even though she doesn't get to eat them. 

She loves the new location of the swings.

Honestly, they have played in the backyard more than ever since the play set went away.  We've had friends over for s'mores and it's just a more enjoyable space.  I will admit that I was really nervous at first, but Tom has done a great job and proved that I shouldn't worry so much.

Now we are spreading new mulch (we haven't added mulch in a couple of years, which is pretty obvious).  We have a lot of mulch area in the backyard (way more than grassy areas) so it's going to take us a while to finish.  But, we'll get there.

It's now 11:47 pm on Monday night and I started this post at least a week ago.  I just saw a spider on our bed and I involuntarily screamed and woke Tom up, which he was not happy about.  We had to go on a spider hunt (I have no idea where he went, which is terrifying) and now I have to go and get off the laptop.  More later.

Thanks and much love,
Christy xo

Quick Update

So much to blog, so little time...

Murphy

I can't remember if I told you that we had not restarted Murphy's ADD meds.  He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!!  So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback.  She e-mailed me back that he was doing "fine in some areas but having difficulty in others."  She said she wanted to meet with me or talk over the phone.  Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid.  But, that he cannot stay focused.  She said that he plays with the stuff in his desk.  When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars.  He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way.  The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!!  At least we KNOW he needs the meds.  No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar.  All day!  It sucks that we have to chose between learning and nutrition.  They are both important!!!

Harlie

Kindergarten is going well for her, I think.  She seems to like it.  But, of course she can't tell me all about it.  Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize.  The other day I asked her if she had a good day and she SAID - clear as a bell, "good day."  Murphy was in the kitchen and he could hear and understand her perfectly!  That was so awesome to hear!!!

There are some kinks to work out (which is totally expected).  Unfortunately, her communication device isn't being used the way it should.  And even more unfortunately, it's going to take some effort to get that to change.  After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting.  The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication.  So, she has been assigned a sign language interpreter.  But, that's not what she needs.  She can hear with her hearing aide on.  She just needs someone to help her use the device to speak.  So, we'll see what happens...

She missed the bus this morning.  Her original pick-up time was 6:48am.  On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!).  So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there.  So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go).  Oh, and my gas light was on, so I had to stop for gas.  Considering I woke up at 5:30 to start working on  getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out.  I felt so horrible that we didn't try harder to be at the end of the driveway.  But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!!  And no one told us.  But the driver came at 6:48 and then waited the required TWO minutes and then left.  UGH!!!

So far there are a lot of issues with riding the bus.  And they are making me feel very stressed.  But, I really don't want to commit to driving them everyday.  So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable.  As it stands right now - she spends TWO hours a day on the bus!!!  Doesn't that sound like it's too much?!?!?

I am also worried about the playground.  Jennifer went to school with her on Friday and she said that she was run over by the other kids.  She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her.  Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps.  Ugh.

Tom measured the kids the other night on our measuring wall upstairs.  Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh!  And Harlie lost her first tooth - naturally!!!  She's lost four in the past, but they were all due to surgical issues.  This is not the best picture - but it's all I got.  She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.

The picture was taken during a feeding.  Here are more photos from that awesome (note the heavy sarcasm) feeding session:

Are you still here?

Why do you make me eat this crap?

Honestly, I don't know who hates oral feedings more - me or her?

Cooper

Tomorrow is Cooper's first day at his new preschool!!!!  WOOHOO!!!  My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control.  Oh I can't wait to get some things accomplished around here!!!!  And I hope he really likes it, too.

Well, that's it for now.  More later!

Thanks!
~Christy

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!

Thanks!

~Christy

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!!!

UGH!

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!
~Christy

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!

Thanks!
~Christy

Speech Therapy and her communication device

After our hearing appointment last week, we met a new speech therapist.  This is something I haven't been able to blog about.  So, to bring you up to speed, here's the low-down:

Since she's starting Kindergarten in the fall, I think it's imperative that she be able to communicate with her peers.  And they don't know sign language.  And, at home, it is getting increasingly frustrating - for all parties - to not know what she wants or needs all the time.  She is almost five years old (crazy!) and she has a lot of information in her head that she just can't get out.  

We were receiving one hour of speech therapy per week.  And because of the body cast and surgery, etc. it's been a while since that was consistent.  

So, I decided that I wanted her to get WAY more therapy - and I wanted it to focus on her communication device.  There is a physical therapy place (Hope Therapy) here that offers an "intensive physical therapy" program, where the patient goes every day for several weeks.  That got me thinking about doing the same thing (to a lesser degree, of course) with speech therapy.  So, I started calling some speech therapists to see if they had an interest in doing an intensive program with Harlie - focusing on her device - at least three times per week.  

Because of insurance red tape - this would never be approved.  So, because of the many wonderful, generous donators to The Harlie Fund (including the awesome Harlie Crew!!!) we have some money to pay for this service privately.  That will get us a lot more therapy - and a lot more freedom to do what we need to do to get her "talking" and having conversations with her device.  

I cannot tell you how incredibly excited I am about this!  And I cannot begin to tell you how thankful I am that we have been so blessed with people who care about Harlie enough to be generous with their hard-earned money!  Thank you so much for making this possible!  Just think - YOU are helping her TALK!!!  What an amazing gift!!!!  Words simply cannot express what this means to us!

And, as if that isn't great enough, we got super lucky and were able to hire Harlie's first speech therapist ever - Beth!  Woohoo!!!  We are so excited about having her back in our lives again!  

Beth called another speech therapist, Amy, and asked her if they could partner with this project.  Three sessions per week is a tall order for any therapist.  So, if they do it in a partnership, we are more likely to get all sessions in each week.  

And last week was our first week.  Harlie is SO ready to talk!  You show her where a word is on the device one time and she's got it forever.  I knew this already.  We've been using the device a lot more the last few months.  And she tries to build sentences completely on her own.  

Unfortunately, the larger device (which holds more words and has more options as far as past tense and ing words, etc.) would better suit her needs.  But we have to make this smaller one work for now.  This means a lot more programming time on the device.  So, just in case, if anyone knows of a Vantage Lite that someone is done using, please let me know.  As you can see, they are quite expensive and I don't think we qualify to get a new device for another three years, at least.

Last night I felt the difference between the two devices.  Cooper took a toy away from Harlie and she was upset and crying.  I knew she was playing with that toy earlier, and when I heard her crying, I saw Cooper had the toy, so I figured out what happened.  But, that's not always the case.  So, I wanted to show her how to tell me - using the device - that "Cooper took my toy."  But, there is no took.  Just take.  Which is clearly different.

It is amazing how much we learn about language development without even trying.  And when natural learning can't occur - how incredibly difficult it is to teach.  It is truly overwhelming.  But, luckily, she likes her device and is a willing participant.  So, I have high hopes!!

Thank you again to The Harlie Crew and all the generous contributors to The Harlie Fund for making this possible!
~Christy

Updates

So much to say, so little time...

Ear Issues

So, last Wednesday (the 25th) Harlie had an appointment with her audiologist for her regular testing (its been over three months since her last one).  I told her that we've been having some issues with her hearing aid squealing (feedback) at odd times, out of nowhere.  So, she looked in her ear and there is some wax blocking the canal.  She tested her and when she last tested at 2.6, she was .4 this time (my numbers might not be exact, but close enough).  Clearly, the blockage is affecting her hearing a bit.  So, she said that we needed to get in to see an ENT to try to clear it out.

Our goal was to get her a-okay in time for school, which starts Tuesday.  So, Ann helped me get an appointment with a local ENT (Harlie's ENT is in DC, and I really don't want to drive up there for this right now) and we went to see her this past Wednesday.

The ENT said that Harlie's ear tube has come out of her ear drum and, of course, wax has accumulated, blocking her ear canal.  This was Harlie's 3rd ear tube in less than 4 years.  Her DC ENT put it in in November of last year.  It is a T-tube, and is supposed to last longer than the normal tubes.  I asked the ENT why her tubes come out so quickly (none of them have lasted a year).  She said that she must have really thin ear drums and there just isn't enough "meat" to hold the tube in place.  It certainly isn't because she is growing (the normal reason why tubes come out).  Her ear canal is still super tiny, like a baby's.

So, we're putting drops in her ear to try to loosen up the wax in time for our next appointment - on Thursday.  The ENT will try to pull the tube and gunk out in the office.  If she can't, then that means Harlie will have to go to the OR (at some point in the near future), which I would rather avoid.  So, hopefully she can get it all out and get her hearing clearly again.

Nutrition Appointment

Last week (the 26th) Harlie had an appointment with the feeding clinic team.  Overall she is doing great gaining weight.  She weighs 31 pounds, 14 ounces (25th percentile) and she is 36.4 inches tall (3rd-10th percentile).  She gained over two pounds since her last appointment in May - and that includes having heart surgery.  Overall they said that she gained 178% of expected weight gain (so she gained almost twice as much as expected).  And I can see this growth/gain.  Shorts that she could wear at the beginning of summer, she can't get into now.  And I have never seen her outgrow something in one season.  In fact, at the beginning of this summer, she could still wear size 24-month shorts!

Here she is getting measured.  You can see that in order for her to stand straight, one leg has to be bent quite a bit.

And here she is with her feet even on the floor.

That's quite a difference.  And it's a reminder that I must call her orthopaedic surgeon for an appointment!  She wanted to see Harlie months ago.

Feeding Therapy

Feedings were going great until her heart surgery in July.  Once she got home and recovered enough to start oral feedings again, we have been going downhill in the behavior department.  She is eating "well" as far as volume goes - but it is a lot of hard, hard work!!!  And I really feel like I am reaching my breaking point.  I am so close to being ready to throwing in the towel on oral feedings.  I haven't been this "over it" in a very long time.  And if everything else was "normal" and I wasn't using my patience in every other department as well, I could deal with it okay.  But, my patience is already stretched to the limit.

Here's what I mean:

She used to tolerate her HME just fine and wore it all day, with no issues whatsoever.  Ever since her surgery, she takes it off all the time (the HME provides humidity and moisture to the air she breathes and when she doesn't wear it, her secretions get thick and forms mucus plugs - NOT good).  Another benefit to the HME is that when she coughs (this is gross, I know) her secretions go into the HME and not all over whatever or whoever is in front of her.  The HME "covers her cough", if you will.  Well, now she takes the HME off whenever she coughs - which is about a gazillion times a day.  I know this might seem strange - but I think kids with trachs cough a lot more than kids without trachs because that trach is in her airway.

Another negative to her taking the HME off all the time (especially when she coughs) is that she can accidentally decannulate herself (pull the trach out).  Which is exactly what happened on Tuesday afternoon as Brandy was walking out the door to go home.  Luckily she noticed that Harlie sounded "different" and looked closer to see what was going on.  I was on the computer, like any good mom should be.

Brandy told me that she was decannulated and I jumped up and tried to put it back in.  But, it wouldn't go, so I had to get the emergency kit from her diaper bag and start with a fresh trach.  Once Harlie realized what was going on, she was not cooperative in letting me put it back in.  So, Brandy had to hold her arms down while I put a new trach in.  Luckily, she appeared to be breathing okay, so we weren't as scared as we have been in the past.   We were still scared, just not as scared.

So, in summary - this HME non-tolerance crap she's pulling is causing major issues with plugging and decannulation - both things that make breathing difficult.  Whew!  It's a good thing it's not a big deal.  And it is a constant issue.  Truly - a constant issue.  A pull-your-hair-out-go-running-and-screaming-out-the-house kind of issue.  A think-of-a-million-other-forms-of-torture-you'd-rather-endure kind of issue.  Seriously.  I am not exaggerating.

She won't walk any distances - even the same distances she walked prior to surgery.  She really fights the stairs - both going up and coming down.  This produces an agonizing argument every morning and night.  This is one where I have pretty much given in and let her win.  It just isn't worth it to me.  That's not how I want to start off the day, or how I want to end it.  I know I will have to change this - but all in good time.

I know she is capable of potty training.  Okay, I believe she is capable.  But she is not willing.  And no matter how hard we work, if she doesn't want to be potty trained, then she won't be potty trained.  Again, this is a battle in which I surrendered.  We've been working on this for well over a year and I just don't have it in me anymore.  She will do it when she wants to and that's that.  Of course, that doesn't make accepting the situation any easier (on our part, I mean).  I still get my hopes up when we have a good day and they come crashing down when the next day is like the good day never happened.  It is very frustrating.

Communication suffered after surgery, as well.  She went several weeks where she pretty much refused to communicate in any way.  That has definitely improved - but not as good as it was prior to surgery.  The other night I was the most frustrated with her lack of communication skills than ever.  She wanted something from downstairs (as we were getting her ready for bed) and she wouldn't sign or use the device to tell me what she wanted.  For all I know she just wanted to be downstairs.  But, I really don't think that's likely, because she has never wanted to go back downstairs once we've gone up for the night.

So, then I thought she obviously doesn't know the sign for what she wanted or how to say it on the device.  I don't know.  In looking back maybe I should have taken her back downstairs to let her show me what she wanted.  I was thinking at the time that she was probably stalling and I was (quite frankly) super tired and I didn't want to carry her down and then have to carry her back up the stairs.  And she didn't appear to even be trying to "tell" me what she wanted.  And I didn't want to reward that kind of behavior.

Anyway, as you can probably see - there are only so many battles I can fight.

Back to our struggles during feedings... Allison (her therapist) said she is going to ask child psychology to sit in on our therapy sessions for a bit to see if she might have any ideas.  My main fear at this point is that we are making feeding a negative experience for her.   I can only imagine what it's like for her.  From her perspective, this is how I see it:

• She doesn't know or understand hunger - what it is or how to satisfy it.  
• She doesn't appear to be able to actually taste anything.  The only reaction we get from a food is in it's texture or thickness.  So there's no enjoyment there. 
• She has no interest or desire to eat or try what we are eating.  

So, to her - what's the point?  In this way, I am completely sympathetic.  I mean, how can I blame her?  Doesn't that just sound horrible?

And another thing... anytime you hear some "expert" talk about parenting, you hear "consistency is key."  Harlie has three nurses, two parents and several therapists that all have their own way in dealing with her.  We all have different expectations, demands and tolerances.  Consistency is not something Harlie gets to experience - and not for the lack of trying, either.

I am trying to believe that this is just a phase.  She's testing us and learning our/her limits.  If we can just persevere through this difficult phase, she will realize that it's less work to just eat the food without fighting so she can go do whatever she wants to do, sooner.  And if we could just teach her that communication will bring her power and control.  I think that would make such a big difference in her willingness and participation.  And maybe giving her more control in one area, will make her less likely to want it another area.

On a good note... we had open house for Murphy and Harlie's schools today.  Harlie will be in the same class she was in last year, with the same teacher (awesome Mrs. Katie) and the same students.  So, that will be good.

And she will get some good quality language development time with her hearing impaired teacher.  She will see her three times per week for an hour and a half in another classroom, before her class starts, for more direct instruction.  So, Monday, Tuesday and Wednesday she will go to school at 9:30am and will see her HI teacher until 11am, then she will go into class till 2pm.  On Thursday and Friday, her HI teacher will come into the classroom between 11am and 2pm for language development.  I'm hoping that her being in another classroom, with more direct instruction will really help her make some progress in communication.  We'll see...

Murphy seems pretty excited to start 1st grade.  His teacher seems nice and he has a few of his friends from Kindergarten in his class, so that's good.

I am feeling a little overwhelmed over what our schedule is going to be like beginning next week.  Once I have it all figured out (yeah, right) I will try to show you, so you know what I mean.

Okay, that's it for tonight.  It is late and tomorrow is another busy day.  Yay!

Thanks,
Christy

Hide and Seek

On Wednesday, Jennifer (one of Harlie's nurses) and Kyleigh (her daughter, same age as Harlie) were over. Kyleigh wanted to play hide and seek with Harlie. So, she started counting to 10 out loud. I was thinking that it was sad that Harlie couldn't count so Kyleigh could hide.

Harlie can count to 10 - but with sign. In fact, she just learned it last week. Just in case you're curious how to count to 10 in sign, here's a video...



Anyway, even though she can sign, that won't do much good for playing hide and seek. So, I was feeling a little bummed about it until I realized she could use her communication device! It has a numbers page! And I added a button that says "ready or not, here I come!"

It was the cutest thing! Harlie would count on the device and Kyleigh would hide in the bathroom. Harlie would go straight for the bathroom, open it, they would both laugh, then Harlie would go into the bathroom and Kyleigh would go and count. And Kyleigh would count using the device, too, which was really cute. But, if she took too long to count, Harlie would come out of her hiding spot. I guess she doesn't have a lot of patience.

It was the sweetest thing to see them playing together like that. And I think it is the perfect example of how beneficial a communication device can be. I love that thing. And she loves it, too.

More later!
~Christy

Sippy Cup is a hit!

Just in case you're wondering how the sippy cup thing went over at dinner...

It went GREAT!

We only put two ounces in (not sure why) and she drank it all! I showed her on the communication device how to say "drink milk" and she would make it say "drink milk" and then she would take a sip, put it down, then say "drink milk" and then take a sip, put it down, etc.

You should have seen how proud she was of herself! It was so heartwarming. I can't imagine how it must feel to be her. She clearly is starting to realize the things that others do, that she doesn't. And I think she wants to, too. Although Tom did offer her a little taste of ice cream and she said NO for sure to that. Oh well. Baby steps. Or, as my friend Janis says, Inchstones! How's that for you? A three and a half year old that drank from a sippy cup for the FIRST TIME EVER!! Talk about patience!!!! I really hope there's something big waiting for us when we die.

I see big things with this sippy cup.

Oh, I forgot to tell you that she can "read" the Brown Bear book on her communication device. She presses all these buttons... I see brown bear looking at me, and then does that for each animal. Then after she's done, she presses the all done button. I will have to video it. It is so cute!

And - a Cooper first... Cooper NEVER eats vegetables. If it is green, he will NOT put it in his mouth - period! So, I went to Whole Foods to get Harlie some probiotics and I went to the frozen vegetable section and saw soy beans. Already shelled, steam in bag. Hmmmm. Murphy likes them. Perhaps, just perhaps, Cooper will try them.

YES! Cooper ate something GREEN!!! Woohoo! And liked them! I thought I was on cloud nine last night at dinner. Seriously, it was crazy good!!! It was such a wonderful dining experience with ALL of my kids drinking by mouth for the first time EVER!!!

Then, after dinner we went outside. I am totally loving the warmer weather. I got out Harlie's tricycle. Last year we had to put straps on the pedals to help her keep her feet on them - she was still a little short for it. Well, she got on it and pedaled like she'd been doing it forever. She could even stop, and then propel herself forward again by pushing the pedals - with no help! WOW! She still lacks the strength to go up an incline - but that's probably right around the corner.

Well, another post full of brags. I could get used to this!

Thanks!
~Christy

A Good Night.

You know those moments when you look at your kid and you think your heart might explode because you love them so much? Well, I had that kind of night tonight. And after my super long post from last night, I thought my faithful, wonderful, much appreciated readers deserved a good, normal, loving post.

I don't know what got into Harlie tonight. But she was the absolute cutest little girl I've ever seen. I honestly thought I was going to melt.

We were getting ready to sit down for dinner and I put Harlie in her chair with her communication device. I thought I would let her sit and explore while we were having dinner. We were having dinner in the dining room and we were going back and forth into the kitchen putting food on the table. I heard her cough and then I heard the communication device (it has a kid's cute little voice) say "I need to be suctioned." Tom and I stopped in our tracks and just started laughing. It was SO weird and so wonderful to "hear" her say something! Especially when I know she "said" that on purpose!

Later, Cooper was holding his most favorite snack (graham cracker sticks) and Harlie went over to him and it appeared that she was taking the box away. This, of course, made him scream and fight for the snacks. But, I know she doesn't want the snacks for herself. She just wanted to open the box for him and feed him. So, I signed to her "do you want to help Cooper open the box?" And she signed "yes" and went and sat down next to him. She reached in the box and fed him one. It was SO cute!

And it was almost like she was so appreciative of my understanding what she wanted. Like she was fully expecting us to yell at her. And it really looked like she was so glad that she was understood. Ahhh, what a good little moment!

When we were putting Cooper in his crib, Harlie looked through his toy baskets and found a little stuffed mouse and gave it him. She really is so thoughtful sometimes!

When I was putting her in bed, I gave her her night meds and water. She saw the syringe coming, so she held up her nightgown so I could get to her mickey button. As I was giving her water, she held up my shirt, looking for my mickey button! With her head cocked and her face all curious - looking for my g-tube, I couldn't help but laugh. After she didn't find one, she just put my shirt back down and went back to her book. I have to say, I almost felt bad I didn't have one, too. Think of how tickled she would have been if she looked and there one was - one just like hers! Guess I'll be performing surgery on one of her dolls pretty soon, huh?

And just seeing her walk around - especially when she's excited and walks really fast - in her night gown just made me smile and completely warmed my heart.

Tom took Murphy for a much needed haircut and then stopped at the grocery store on the way home. And then he gave Cooper a much needed haircut. As he was clipping Cooper's hair, Murphy and Harlie came in looking all curious. The kids all got baths, and then went to bed cooperatively with nothing but smiles and laughter.

After a day like yesterday, I'm thankful for tonight.

Thank you to all of you who hung in there and actually read my entire post recapping Tuesday's events. You are true readers and I'm thankful for you, too! Can't you just feel the love?

I just ride the waves when they come.

~Christy

Just a quick one...

to let you know how things are going.

Harlie is wearing her hearing aid VERY reluctantly. If she sees me coming with it, she immediately covers her ear with her hand. And then all of a sudden she turns into an octopus and has more hands than I do and it is a major scuffle to put it in. She's worn it for two 45-minute sessions (in two days) and she did wear it for our whole speech therapy session on Wednesday (which is a little less than an hour). The rest of the times have probably been for less than 15 minutes each.

We put it in for dinner tonight so she could "join" in on things. I usually give her a toy that will keep her busy - like Mr. Potato Head or some building blocks - since she can't eat or anything. Murphy talked the ENTIRE time. I almost wished I had a hearing aid I could take out! So, I couldn't blame her one bit when she ripped it out. Seriously, I don't know how that kid gets enough oxygen when he talks like that!!! God love him!

Plus, with Cooper's screaming and carrying on - that's got to hurt! I was thinking that she would like to wear it for her favorite movies. But, even when I turn the volume down to a respectable level - she still takes it out within a few minutes.

I guess this will be a long process.

Now I feel even better about a decision I made over the weekend. Tom was out of town (more about that later) and I realized there was no way I could keep up with Harlie's potty training. She pees every 30 minutes and to get her on the potty is a struggle. I decided that there are only so many battles we can fight. She must think I am the meanest mom ever. And I hate fighting her all the time. And when it comes to the potty - she's going to win. So there. I'm done. I've thrown in the towel! When she's ready, she'll let me know.

And do you know that very day I stopped putting her on the potty she told me she wanted to go! That stinker. She's asked several times since then. So, I'm sure without the pressure from me, she'll probably be potty trained in no time. Maybe this will finally get me to learn that I cannot pressure her into anything. Somehow I need to figure out a way to make her think it's her idea!

Harlie had her private speech therapy on Wednesday. Her therapist taught me some more things about her communication device. Adding that into her day is another long process. And one that will have to start a little at a time. Tom and I uploaded some pictures of the characters of her favorite movies (Ice Age, Finding Nemo, Curious George, etc.). So, she now knows how to ask for a specific movie on the device. That took no time at all. She also knows how to ask for bubbles. We also uploaded a picture of her, so that when she wants to say "I" it is a picture of herself. Now we need to upload pictures of her favorite books and toys so she can learn to ask for those.

After speech therapy I took her to get her haircut. I was a little worried because she has gotten so incredibly protective of her body. But can you believe that she sat there like she's done it a hundred times and was good as gold?! Seriously, she could not have been any better behaved! I wish I had my camera, but I forgot it. And I still haven't taken a picture of her new haircut. I'll do that soon and post it. She just cut some length off - it was way too long. And it was constantly getting in the way of her trach, which got pretty gross after a while. It had to go!

Well, Tom was out of town for his Grandfather's funeral. He passed away on December 30th. He was 85 years old. Tom's Grandmother passed away last December and ever since he has missed her so much. He had a stroke a few months ago and he said he wanted to be with his wife. So, Tom went back to PA for a few days for his funeral.

This is when I hate that our life is NOT normal. We can't just put the kids in the car and go. So, for many reasons, we stayed here and Tom had to go without us. And I hate that I couldn't be a supportive wife. But, Tom said that his grandfather is where he wanted to be, so that helps.

Today we have speech therapy at the school. So, that's it for now. More Later!

Take care,
Christy

Excited About...

I know I should write something more emotional and heartfelt about the passing of 2009 and all the challenges and HOPE that 2010 brings...

But I don't feel like it right now. For now, I just want to tell you what I'm excited about.

One - Harlie's hearing aid! Talk about hope!!!! And HUGE potential!!!!! I'm so excited about all the things that could be better with a hearing aid that works for her - and allows her to hear so much more of her world. Our appointment is MONDAY!!! Woohoo!!!

Two - I'm excited about her communication device and all that it could add to her world as well. I'm excited about being able to have a "conversation" with her. And I'm excited for others to be able to communicate with her, too!

Three - I'm excited to get her jaw unwired. Can you believe that it has already been over 3 weeks since her surgery? So, just 5 weeks to go and the wires come out!

Four...



So... What are you excited about???

Exciting News!

Harlie's communication device arrived today!!! I am SO excited!!! And so is Harlie!













She really went crazy over it. It was so great to see her so excited. And its great to be able to post some pictures of her smiling again!



Now we just have to learn to use it. Tom figured out how to change some things in just a few minutes. We recorded a "My name is Harlie" button, which is way cool. I can't wait to see her learn how to use that. And a "I am 3 years old" button. We added a button for Murphy and Cooper. Murphy got a big kick out of that. There is so much more customizing to do. But we'll have to work on it when we can concentrate. Harlie's speech therapist knows this device really well, so she will help me, too. We'll have to learn how to incorporate it into our routine. I worry about that a little. I hope this device is pretty tough. She doesn't understand to be careful. And how do I let her use it without getting her drool all over it? Ugh.

The other exciting thing is that tonight she got her LAST dose of her antibiotic! YAY! Hopefully now her hives can go away for good.

Take care!
~Christy

Surgery Update #2

It is 9:30 and we are still waiting for an update. One of the nurses that took her back said that she would call when they started the surgery. It takes quite a while to get her all ready for the surgery to actually start. Back in June when she had her heart surgery, they said it took the anesthesia team a long time to get her ready (gaining access to her veins is becoming more difficult). Once she’s stable and ready, then they are going to do the echo (ultrasound on her heart). That should only take about 15-20 minutes. Then they will be able to start the surgery. So, I should be getting a call any time now.

As far as how long the actual surgery will be, I have no idea. Most surgeons don’t commit to a time, which is understandable.

Handing her over was easier on her this time (vs. November 20th when she got her ear tube), but it is definitely getting harder on us. Most of the time, I’m pretty good. I’ve gotten pretty callused as far as that goes. But, that time in November, and this time were definitely harder. I dream of the day when we are done with surgeries.

I think ignorance is bliss. Knowing what’s ahead as far how she’s going to look is way worse. The last time we did this surgery I was so focused on the positive changes the surgery would bring in her face and the hope of getting decannulated (removing the trach) that I didn’t really think of how she would look post-operatively (bruising, etc.). Now it's more like the other way around.

Well, they just called and said that they started the surgery around 9:30. They took her back at 7:45. She’s going to call every hour.

Tom did some searching on how to get us access to the internet and found that we can rent a Verizon mobile broadband. So he went to go get that, which will make today and the next several days, much more bearable. It makes me wonder how we ever got along without the internet!

Oh, I forgot to tell you that I got a call yesterday that Harlie’s communication device has been approved by all parties and that they will ship it within the next 2-3 weeks! YAY! I am so darn excited! Of course, she won’t be able to hear it until she gets her hearing aid (on January 4th). But during that time we can be getting it all programmed and specific for her. For example, there is a button that she can push that will say “My name is Harlie.” Oh, I just can’t wait!

Thanks for continuing to think of us!
~Christy

More devices...

Harlie had speech therapy today. So, we looked at a few communication devices. It's so cute to see Harlie so excited about it! And just after a few minutes she knew where certain keys were (even when Michele hid the picture) and she started to imitate the words. One of the buttons is a stop sign and, of course, it says "stop" when you push it. Well, after just a few times she started to try to verbalize "stop." It was so cute! And that's exactly what we want her to do.

Well, we looked at few devices, and most are just too heavy. If she can't carry it around, it just isn't practical. So the Springboard Lite was still the front runner. Until Michele thought about it a little more. She said that it can only go up to 36 keys and she said that Harlie will outgrow that in a year. Hmm. Good point. So, it looks like we're going to look at the next step up - the Vantage Lite. It can have up to 84 keys. It isn't as light (it's one pound heavier at 3 pounds, 6 ounces). But I think she can manage that just fine. The only problem is that the Children's Hospital here doesn't have one for us to see in action. And it's kind of hard to think about committing to a device that we haven't been able to use first. They are not cheap. So, I don't know what that means for us. I'll talk to her more about it next week.

Tomorrow Tom is having surgery on his shoulder. We have to be there at 5:30am! Ugh. I am hoping that they will have wireless there, so I can work on my computer. I am also hoping that his recovery will be okay (for him, and for me). Well, I have to get off the computer now.

OH! One thing I wanted to tell you about is that Harlie is doing GREAT with her oral feedings! On Tuesday and Wednesday she ate a daily total of over 12 ounces!!! WOW! And today she ate 10 ounces, but she missed an entire feeding because we had speech therapy during that meal. So, I think we can say that she's consistenly eating over 10 ounces per day by mouth. WOW! We meet with nutrition next week to figure out a new plan. It is getting very difficult to get in all her oral feedings and her tube feedings without just completely over-stuffing her! And, honestly, we are feeding her one way or another - all day!!!

Well, hopefully I'll have good reports on Tom's surgery tomorrow.

Thanks!
Christy

Communication

So I have a lot of catching up to do since I've been absent from my blog for a week. I think I'll start with the most exciting thing first.

So, I've been thinking a lot about our communication with Harlie - and about her communication with us. I think signing has been wonderful. I can't imagine what our past two years would have been like without it. However, while I love it, I just don't think it is getting the job done anymore. I think it has come time for me to consider a communication device. She's almost three, and her exposure to people who don't know sign is growing. And I really feel like she wants to say more than just the signs she knows.

Once a month I get together with a group of moms who have special kids, too. And during the last dinner a mom told me about her experience with a communication device. She thought it was very beneficial to her daughter and she saw major progress after a short amount of time. All the benefits she mentioned are things that I really feel like Harlie needs (and us, too). Of course, a communication device was suggested by our speech therapist and she even brought a few for us to see. But that was a long time ago, and I just wasn't ready. But I am now.

So, I called our speech therapist and told her. She was SO excited! I think she knew all along (as well as our last therapist) that this was the direction in which we needed to go. And, even though they were/are right, I am very glad they let me try it my way first (with sign) and let me come to this conclusion in my own time.

So, last Thursday she showed me this new communication device called the SpringBoard Lite. I loved it! It is only 2.5 pounds and she can carry it around all by herself. And she took right to it, too! Within minutes she could say she wanted to play with the doll and change the doll's clothes and then pick which article of clothing she wanted to change.

What's so exciting is that it will open up her expressive communication so much! She can only sign what we teach her. And that's it. She can't sign something she overheard someone else say, something her teacher taught her or something she heard on TV. And there's only a few of us that would understand her anyway. Talk about limiting!

There's a button on this device that is a picture of a little girl. So, let's say she goes to a doctor's appointment and someone says to her, "Hi, what's your name?" Well, she can touch the little girl and the device will say, "Hi, my name is Harlie." Then the person could ask her, "how old are you?" And she could touch the button that has a cake on it and it would say, "I am 2 years old." Now how cool is that? That's a whole conversation that she can't have now. And this way she can talk to other kids, too!

Now if we could just get our hands on one to keep! Unfortunately, that takes some time. First our ST has to show us several different devices (ugh!). Then once we decide which is the best for Harlie, then our ST has to write a letter of medical necessity. She said that will definitely NOT be a problem. Then it goes to our insurance for approval. Once approved, then it gets ordered. THEN it takes 6 to 12 weeks to come in!!! Holy crap! So, hopefully we can get started this week. Now that I've made the decision and I've seen it in action - I WANT IT NOW!

And now that she is starting preschool - I think it is going to be essential. Yes, she starts preschool at Three Oaks Montessori School on September 8th (the same day Murphy starts kindergarten). WOW! She will go two half-days per week - Tuesdays and Thursdays. I will drive Harlie and Brandy (her nurse) to school each morning, and then go back and pick them up after lunch. The challenge will be keeping her therapy and doctor's appointments out of those time slots! Already her speech therapy conflicts on Thursdays (which we're working on fixing). But some doctors don't give you much choice on appointments (they only do clinic on Tuesdays, for example).

There are so many positives to her starting preschool. But the major ones (other than her getting an education) is that she will be able to "eat" with the other kids. So, during snack and lunch, Brandy can give her oral feeding then, while Harlie is watching other kids eat, too. I'm really hoping that she will see that other kids don't shake their heads or block the food from getting near her mouth, or cover their mouths with their hands. And the school has a small class (I think 13 kids total) and it is a quiet environment, which I think will help. With her only having hearing in one ear, if someone calls her name, she'll hear it, but she might not know which direction the person is calling from. So, with a lot of kids talking/playing in one room (like in most preschools) I think that would overwhelm her.

Anyway, her speech therapist said that kids love computers and that with Harlie's communication device, she'll be very popular and kids will want to talk to her. I just don't want them to be afraid of her. And it would be great if she could talk to them and let them get to know her personality. I really believe that once she is given a chance, you couldn't help but like her.

So, hopefully we can get things moving so I can see what my little girl has to say! See, isn't this exciting????

Thanks!
Christy