We Heart Harlie

The We Heart Harlie event is right around the corner.  The big day is May 18th.  Lynda Reider has been working so hard!  Just look at this flyer!

Wow, right?  Thank you to Courtney Lynch (and her company and employees) for this beautiful flyer!  I think she did a great job!  And thank you to Paige Stevens Photography for the beautiful pictures of Harlie!  I will post the rest soon.  They are just beautiful!!

This year the raffle and 5k have been combined into one day.  And Lynda has been working her magic getting lots of fun stuff organized.  She even got a firetruck lined up to be there.  There are going to be lots of good raffle prizes - I'll post a list soon.

We got new t-shirts designed and ordered, and they should be in any day now.  I'm so excited!  You can order them when you register for the 5k, or you can buy them the day of the event.

Here is the link to register.  http://www.racerpal.com/races/WeHeartHarlie.html

Harlie's school is so incredibly supportive of her.  It really is amazing.  The PTA passed out papers for the students to cut out hearts and decorate them.  Then they post them on the wall in the school - Hearts for Harlie.

They are going to do this through the month of May.  Isn't that the sweetest thing?  I want to share a Facebook comment from a friend of mine, Beckie:

What a thoughtful project.  So good for Harlie, but such a learning experience for the other children.  Kudos to teachers who see beyond the "book learning" and take advantage of such a powerful example that can't be taught any other way!"

I am truly thankful for how amazing Harlie's school (both administrative staff and students) has been to her and to our family. I never dreamed it would be like this.  And Harlie knows that wall is in support of her.

Today, she studied it.  And she picked one of the hearts off the wall.  It was a drawing of a little girl standing next to another little girl.  And the smaller girl is clearly a drawing of Harlie.  It has her bow and her trach.  It was drawn by a fellow Daisy.  I don't think Harlie realizes that.  But, she knows the picture is of her and another little girl.  And Terri told me that she held on to it all day.  And as soon as she walked into the house this afternoon, she showed it to me.  The whole thing is overwhelming.  I really had NO idea how loved she would be by other kids.  I feared the world was a lot more cruel.  I have never been more glad to be wrong.

Lynda runs the We Heart Harlie Facebook page.  And she's been working on the route for the 5k.  Since we will be running on a main road, she's had to get the help of some Henrico County police officers to help with traffic control.  I really don't know how she finds the time to do all that she does.  (And she leads a Daisy troop, too!)

She also wrote this story and submitted it to Richmond Family Magazine.  Isn't she something?  Truly!  I don't know how in the world I'm ever going to be able to thank her enough.  I think her husband is really looking forward to May 19th - when she doesn't have to spend so much time and energy on the Holton family!  Lynda and Rich - thank you!!

Much love,
Christy xo

Daisy Father Daughter Dance

The Daisy Father Daughter dance was Saturday night.  Here are some pics...

Harlie and Daddy

Harlie and Maggie

I LOVE this photo of her!

Gotta get in some puppy lovin'.

I love that she smiles at her reflection in the mirror.
I hope that lasts for a really, really, really long time.

I was so excited.  I found her dress at the Hanna Andersson outlet in Williamsburg for $15!!!  How awesome is that?  And this year - for the first time ever - I didn't have to think or worry about her drooling all over it.  Wow!

Of course I did have to worry about her shoes.  She has the most skinniest feet ever.  So, we get little to no choice of shoes.  No Target shoes for this girl.  Her shoes have to come in super narrow.  Which totally takes all the fun out of shoe shopping.

I really wanted to take her earlier in the week, but it didn't work out.  So, it came down to Friday.  And Saturday we were booked all day - no way I could have done it then.  So, Cheryl came to do her educational session at 2:15.  After that was done and I finally got the kids ready to get in the car, it was later than I wanted to leave.

But, sometimes, I just don't want to do what I'm supposed to do.  I'm tired of having to run around and do crap I don't want to do all the time.  My house was a wreck and I wanted to stay home and get it straight.  It was cold and super windy out and I just didn't want to take Harlie out in that.  But, I had no choice.  It had to be done.

To back up for a sec, the night before, the mom of one of Murphy's friends called and asked if he could go home with her son after school.  Perfect!  Murphy will love that and I only had to worry about Harlie and Cooper for the afternoon.  So, I called Maggie (my niece) and asked her if she could go with us to the mall so she could take Cooper to the play area while I did the shoe thing with Harlie.

As I was getting the kids in the car on Friday, I had some doc phone calls to make and in the process of that, I thought to myself, call Beth about Murphy and tell her I am running late and I can pick him up instead of her bringing him home.  I'll call her from the car I thought.  So, I get them in the car, and I think to myself, who was I supposed to call again?  Hmmm.....  I think and think, and it doesn't come to me.  I guess it wasn't that important - is what I said to myself.  Oh well, moving on...

An hour later, Harlie and I are still at the shoe place (they were busy) and my phone rings.  It was Beth.  THAT'S who I was supposed to call!  Ugh!  Of course, she's at my house with Murphy.  I offered to call a neighbor to see if she could drop him off there, but she said she would just keep him and I could come and get him when I was done.

Lately, it feels like my brain just can't keep up.  I'm still terrible at responding to my emails.  So much for that New Year's resolution.  There are times in the day when I get a moment to think and I have no idea what I'm supposed to be doing.  The to-do list is so long that it really feels impossible, so it's easy to give up and do something else.

Right now my brain is very preoccupied with nursing issues.  It's taking up a LOT of space, time and energy and I'm hating it.  More about that later.  Like when I get it figured out.

Anyway, Harlie and Tom had fun at the dance.  I could tell he wasn't super excited about going.  And I knew it was because he was thinking about how she was going to do, how she was going to act with the other girls, etc.  She just doesn't seem to try to communicate with her peers.  And they try so hard to communicate with her.  They want to hold her hand and lead her to where they want to go, but Harlie won't have it.  I don't know if it's because she's being independent, or if she's afraid they are going to go too fast.  I do think that she's very aware that other kids move around a lot more and faster and she might be afraid that she's going to get knocked over.  Maybe it's a little bit of both.  But, either way it is heartbreaking.

And every time I think that, I feel terrible.  Because I know so many other moms that would give anything to have their children to be able to do what Harlie can do.  It is so weird to live in the place between grief and gratefulness.  Maybe we all feel that to some extent, it just seems so extreme in our case.  So many times I wonder what kind of mom I would have been if I didn't have to do so many extra, unpleasant things.

On a good note, the other day Harlie used her communication device to say "juice."  I said, "What about it?" (tough love, you know).  And she cleared it out and then said, "I want orange juice."  And while I fully expected her to say "I want juice" (which is kinda crazy in itself because she's never asked for juice before) I certainly did NOT expect her to say "orange."  And just that simple, small little word lit up my world for a moment.  She "said" something I didn't expect.  And it was WONDERFUL.

Cooper and Murphy say stuff we don't expect all the time.  It's nice and all.  It's actually very funny.  And we enjoy it, no doubt.  But it was totally different with Harlie.  Ahhh, the extreme highs and lows of raising a special needs child.  How am I not chemically dependent on something?!?

Speaking of saying stuff you don't expect.... so we rented Hotel Transylvania this past weekend.  The kids must have watched it at least 13 times.  In my opinion it was quite funny and cute.  Anyway, there's mention of an uncle in it and Murphy asked me if he had any uncles.  ??????  Where has this kid been?!?!?!  So, I said (annoyed, of course), "Yes Murphy!  Uncle Bruce, Uncle Cabell...."  He interrupted me and said in a very shocked and betrayed sort of way, "Why didn't you tell me you had siblings?!?!?"

Kids.

Okay, that's it for this post.  I'm at school with Harlie right now (no nurse today) and will try to start my next post while here.

Thanks!
~Christy xo

Happy New Year!

If you were worried about me after my last post - don't be.  I'm fine.  Actually, I'm much better.  Things are still crazy around here with the kids home from school.  They are off all this week and will go back on Monday.  While I don't consider myself a structured kind of person, I do like a little routine.  So, I am looking forward to getting back into the groove next week.

We are still having some problems with my laptop.  So, my photos are all over the place.  I'm using my old laptop now and have finally uploaded some pics.  Here they are (totally random):

The night we decorated the Christmas tree.

I don't know what happened to this photo,
but I thought it turned out kinda neat.

I tried to take a decent picture of the three kids together.
I have yet to achieve that goal.

My friend Bethany at a neighbor's party before Christmas.
Bill and Veronica really know how to party.

We karaoked into the wee hours of the morning.
This is proof that Veronica was in on it.

Tom and I.
We did not mean to match.

We had the Daisy Troop Christmas party at my house.
It was crazy, but it was fun.

Our little Daisies.

Christmas morning, before going downstairs.

Murphy loved his bike.  And his bike lock.
When he opened the lock, he said, "In your face!
Take THAT criminals!!"

Cooper got soccer shoes...

and a soccer ball from his cousins.  My sister is also
registering him for soccer this spring.  He is going to love it.

Cousins.  From left to right:  Kelly, Tanner, Murphy,
Charlie, Cooper, Harlie, Maggie, Cutter and Jordan

Maggie and Harlie.

Me and Harlie.  Probably one of the best photos
of the two of us together.  

Cooper couldn't wait to get outside to try out his new
shoes and soccer ball.  He loved it!

On Friday night our neighbors had a wine tasting party.  John and Jackie really know how to spoil their guests.  We went through 15 bottles of wine!!!  Aren't they so wonderfully generous?! It was a fun, fun night.  And I have found all the fun nights filled with laughter to be very healing for my soul.  However, trust me when I say I felt like crap the next morning.  But it was worth it.  I almost said, I will never drink again. But then realized that just isn't realistic.  Luckily, Tom was fine (and oh so thoughtful) and let me stay in bed till NOON!!  After a jug or two of Gatorade, and some extra hours of sleep, I was feeling like myself again.  I even took all the Christmas ornaments off the tree.  So I was productive.  Not too shabby.

On Sunday, I ran 10 miles with some friends (The Mimosa 10-Miler).  It was so WINDY!  But, it was still fun.  Afterwards, we hung out with good company and good food.  It was a great way to start the day.

For New Year's Eve, we had our friends Mike and Marcy over for dinner.  Tom and Mike are both foodies and love to cook.

Mike and Tom busy at work.

For the girls:  Mashed cauliflower (it was SO good) topped
with Sea Bass and shrimp with a yummy sauce.

Butternut squash and brussels sprouts salad.

For the guys: Hanger steak (I think?) with chimichurri
sauce and baked spinach with swiss cheese.

For dessert, awesome pound cake that Marcy
made me for my birthday (which is on Christmas).

Topped with a home made whipped cream and fruit.
YUM!!!

After that meal, we were done.  There was no way we were staying up to see in the New Year.  Which was fine by all of us.

This morning, I got up and ran four miles.  Then we went to Mike and Marcy's for brunch.  That was yummy, too.

I only have one New Year's resolution, and it is the same as it was last year... be better about responding and handling my e-mails.  I am terrible at handling my e-mails.  If you've ever e-mailed me, then you know this to be true.  So, I'm going to try it again because it is something that I really want to improve.

Oh, wait.. I have one more resolution... and it is to make time to blog more regularly.  I will be healthier because of it.  I don't know about you readers of it, though.  ;-)

Unfortunately, that is all I have time for tonight.  I will have more for you soon, though!

Happy New Year, my friends!
~Christy xo

More Updates

All is well with Harlie's belly!  Woohoo!

Saturday afternoon, we took Harlie and Cooper for a walk to a playground nearby.  Murphy was playing with our neighbor so they didn't want to come.  That was a little weird.  Since when does he not want to go with us to the playground????

Anyway, that got Harlie up and walking a bit.  I think that really helped her belly get moving.

It's so nice when they play nice together.  You know, those rare moments!

Walking like a little old lady, but walking!

Good, quality time with the kids...

I forgot to mention in my last post that on Friday Harlie woke up with a very bloody mouth.  I have no idea what that was about.  At first I thought she lost a tooth.  But after I got her all cleaned up, I realized that wasn't it - there were no missing teeth.  Who knows?  Even though she's making so much progress in communication, it still kills me when I don't know what happened to her or if something hurts her.  I don't know why communicating her pain is still so difficult.

On Saturday night Tom and I went out on a date night.  I made him take me to Petsmart so I could start thinking about all the stuff I want to buy for our little guy that we get in TWO WEEKS!  I just can't wait!  More about that later.  And I mean my excitement about his arrival!  I know you can't wait for all the puppy photos!

Anyway, on Sunday, Harlie woke up and her belly was almost back to normal.  What a relief it is to not have to worry about that anymore.  I know it's crazy, but I'm always afraid that it's going to be something seemingly "little" in comparison to some of the bigger hurdles she's overcome, that will have a devastating impact.  As much as I tell myself to not think like that - fears aren't exactly rational.

Later that day the kids went outside.  Tom worked in the yard and made them a little fort with some clippings from a tree.  They loved it.

Finally - a smile!

She is definitely feeling better.  Still walking carefully and guarding her incision.  Unfortunately, her incision was bleeding, which I found odd.  We were five days post-op on Sunday.  I took a picture of it and sent it to Katie at the hospital.  She called me this morning to tell me that they need to see her and before our scheduled appointment on Friday.  So, we go back in the morning (Tuesday).  They are going to have to take off the steri-strips and clean it to see what's going on.  I really hope it's not infected.  And I totally dread the process of cleaning that incision!!!  I debated on whether I should post the photo, but I figured if I have to see it, so should you.  Hey, I said I was going to be more honest!

On Sunday night (going back and forth a little here, sorry) two things happened that I consider amazing forward progress with Harlie's oral feeding.  I think it's pretty crazy how she seems to do this (make jumps forward) after a hospitalization and/or surgery.  She's such a crazy kid!

Anyway, she asked to eat dinner with us.  I mean that she wanted to sit with us at the table AND eat with us.  This is something we've wanted for years, but just haven't been able to make it happen.  I've tried to feed her at the table with us, but it never goes well.  She always has a better feeding when I can focus on her.  By the time I got her food all ready, everyone was gone from the table and she no longer wanted to eat.  Next time I'll be ready.  We don't always get to sit down at the table, so we'll just have to see how things go over time.

The other thing she did was ask for ice cream!!!  On Sunday night, we took the kids across the street to Brusters for ice cream.  We all just got the baby cones.  Well, except for Harlie of course.  After a few minutes, Harlie signed ice cream.  I asked her if she wanted some and she nodded yes.  So I made her say, "I want ice cream" on the communication device and Tom got her a cone.  And for the first time EVER, she willingly licked ice cream.

We were so excited!  We were all, "Good job Harlie!" and "Tom, take her picture eating ice cream!" and I couldn't help but wonder what all the people around us were thinking.  They were probably thinking we were a bunch of freaks.  Oh well.  We were happy, so who cares.

Today (Monday) she did well, I think.  She had a good morning, but then seemed to feel bad in the afternoon.   I gave her some Tylenol.  I tried to get her to tell me that she hurt - but she would not confirm or deny.  But, she was holding her incision (which I covered with gauze and tape, by the way) and she just looked like she didn't feel good.  So, I figured she probably was hurting.

Tonight was a Daisy meeting.  I hate that she had to miss it, but I just didn't think she was up for it.  And I was afraid that she would hurt herself by being more active than she was ready for.

Well, I need to get to bed.  We have to leave the house before 6am to make it to the hospital on time.  Hopefully it will be a quick trip.  I'll let you know how it goes!

Thank you!
~Christy

First Daisy Meeting!

Tonight was Harlie's first Daisy troop meeting.  She's been sick since Thursday, and hasn't left the house since she went to see her doctor that day.  So, when we said we had somewhere to go, she was ready!

This picture isn't great - I had the flash off by accident - but it was the only one I took.  Oops.

Tonight she got her troop number and the center of the daisy patches put on her tunic.  Each meeting she will earn a petal to add to the center of the daisy.  So, it will be cuter in time.  Like this...

Lynda is the troop leader, and she did an excellent job!  She had the girls captivated and interested.  Well, except for Harlie... she's the one looking through the rolled up paper.  A lot of language loses her every time. Grrrr!

She started the meeting with the girls each saying their name, how old they are, where they go to school and their favorite flavor of ice cream.  When it was Harlie's turn, she used her device (with just a little bit of help from me) to answer all of those questions.  Well, she doesn't like ice cream.  But Lynda knows that she takes pureed peaches to school for lunch, so she said that if she liked ice cream it would probably be peach.

Lynda asked them to raise their hand if they have sold any Girl Scout cookies...

I wish I could say she heard the question and raised her hand on her own.
But, she didn't.  I had to tell her to raise her hand.
Hey - at least she listened to me.  That's something, right?

Yes, Girl Scout cookies are on sale!  So, go buy some from a cute little Daisy (or Brownie or Girl Scout) near you!  Since Daisy troops are the youngest of Girl Scouts (this is an all kindergarten troop) they start off from scratch - as a brand new troop.  So, we have NO money to use for activities and troop stuff.  And they make most of the troop's money from the cookie sales.  So, buying yummy Girl Scout cookies really makes a big difference.  Thank you to all of you who have bought cookies!!!

Their activity tonight was to decorate their own cookie.

Harlie decorating a cookie to give to her brothers (obviously).

And they also learned the Girl Scout promise, which earned them the center of the daisy patch.  We ironed them on right there so they could all go home with their patches already on the tunic.

The meeting was an hour long, and while I know Harlie had a good time, she was tired afterwards.  She's done nothing for days, so I guess that little bit of activity wiped her out.  I am planning on sending her to school tomorrow (as long as she does okay tonight, of course).  I hope she makes it through the whole day okay.  I'll have to tell you more about her being sick later.  No time now.  Hopefully I'll post again tomorrow.  I have a lot of catching up to do!

Thanks!
~Christy

Big Development!

On Friday night we had our Daisy Troop meeting.  I am happy to report that we have a Leader!  And I am VERY happy to report that it isn't ME!  Thank you very much Lynda R. for stepping up to the plate and leading this troop for us!  I am, however, her assistant.  Which will be fine.  I am actually looking forward to it!  We will meet twice a month beginning in January.  I really hope that Harlie likes it.  And I am still Cookie Mom.  Which, I hope will work out without too much stress.  So, mental note - if you want any Girl Scout cookies, you know who to call!  

On Monday, Murphy came home from school feeling crummy and complaining of a sore throat.  His voice was awful!  Well, to be totally honest, he sort of was like that Monday morning.  But we made him go to school anyway because he didn't have a fever.  We told him to try not to talk.  But, Monday afternoon he wanted to sleep and was clearly not feeling well.  He didn't even want to go to Cub Scouts - so that told me he really didn't feel good.  

Late Monday night I heard from our nurse, Terri, that she couldn't work on Tuesday because she was having car issues and needed to take care of that.  Total bummer.  Because that meant I would have two sick boys at home, which meant there was no way I could take Harlie to school.  So my only "healthy" child would have to stay home, too.  It really kills me when she misses school because of nursing.  

But there's no way around it.  It's not like I can call the agency at 8am and ask for a nurse for the day.  Even IF there was one available, I couldn't leave Harlie in his/her care with no training.  And let's face it - people have to miss work from time to time.  Even nurses.  It just sucks that it means that Harlie has to miss school - especially when she needs every second of education she can get.  

A friend of mine said "it sucks being a prisoner to nursing."  And that is so true.  The fact is that we simply could not live without it.  While it is "nice" to know that Harlie has an adult looking out for her all day since she's basically non-verbal - it would be much better for her to be a typical little girl who could go to school, ask the teacher for help when needed, and then come home and tell me about her day.  

Anyway, Terri worked really hard to rearrange some things so she could go to school with Harlie today.  And I was so appreciative!  At least our nurses know that even though we wish we didn't need them, we appreciate all their hard work and dedication to our family.  

And - both boys went back to school today, too!  Woohoo!  It was a fabulous moment when all my kids were somewhere else where they were supposed to be - at school!  Even though Murphy is still sporting a raspy voice, he was happy to go.  

So, the main reason why I wanted to blog tonight....  I think we have officially turned a HUGE corner in the Holton Household.  Drum roll please....

Harlie told me that she was HUNGRY today!!!  And then she sat and ate her entire meal (pureed Ham and Cheese sandwich, pears and cherries mixed with a little vanilla yogurt and 5 ounces of Pediasure) without even ONE refusal.  And she even self-fed some bites of the fruit!  

I just couldn't believe it.  She pointed to her belly and so I said, "Are you hungry?"  And she said (verbally) "yeah." (She can't say S's). So I signed "hungry" and then she signed it.  Then I got her Talker (which, by the way, she also asked for today when she got home from school - another big deal) and she used it to say "I feel hungry."  

Hallelujah!

For real.  

I felt that this was happening recently (her being hungry) but it has never been so clear as it was today.  When it happened last week, I doubted my understanding of her - or I doubted what she was trying to communicate to me.  But, there was no doubting today.  Nope.  She was HUNGRY!!!  And then she ATE!!!!  With NO fighting!!!  

I don't particularly enjoy feeding my 5-year old like a baby on soft foods only, but when she refuses and it's a battle - I HATE it.  So if she would just willingly eat her meals on a fairly regular basis, it would make a big difference in MY quality of life!  And, honestly, feeding has been going really well these last few weeks.  She still refuses some, of course, but for the most part, it's been going well.  So, I can't help but wonder how long she's been feeling hungry.  

Another bonus to her being hungry, is that maybe she'll tell us when we forget to feed her.  And I know that makes me/us sound horrible.  But, yes.  It's happened once or twice.  But, let's face it - life is busy and typical kids DON'T let you forget to feed them!  

So, hopefully this is a developmental milestone that is here to stay!  I wonder if it has anything to do with being in kindergarten?  

Honestly, I can't believe the progress she's making.  Some days are hard.  Like when I hear other moms talk about their 5-year old and the conversations they have and the things they tell them about their day at school.  But then, there are days like today, when I am SO grateful for something that most take for granted.  And I can see the progress - clear as day.  I have to try to not compare her to her peers.  But that's difficult to do when this world is so competitive.  

But, here's what I've seen progress since September:

She's more affectionate.

She's way more verbal.

She told me she's hungry.

She can write all her letters and numbers (but some of them might look funny).

She willingly (and happily) does her homework (writing assignments).

She draws pictures (rainbows especially).

She tries to walk up/down stairs using alternating steps on a regular basis.

She can blow a horn/whistle.

I think that's a lot of progress in just three months!!!  I am so proud of her!

And since I haven't posted pics in a while, here are a few random ones...

Harlie being silly a few weeks ago.

Cooper, just because.

Me and Harlie at the park weeks ago.

Harlie and I at the pumpkin patch (obviously) in October (obviously).

Okay, that's it for my rambling for tonight.  But don't worry - there will be more soon enough!

Thanks for reading!
~Christy

Week Update

I have so much to write about.  But, of course, I don't have a lot of time.  So, I'll try to be quick.

Wednesday night Cooper woke up with a raging fever.  We took his temperature and it was 103.7.  He felt hotter than that.  We gave him some Tylenol and sat up with him for a little while.  His breathing was fast and labored, his cough was barky and his voice was very hoarse.  I'm sure he has croup.  After he calmed down a bit, we put him back to bed and he slept the rest of the night.  He's had a fever off and on since then.

The next morning, even though he still had a high fever, he was bouncing all around.  Lucky me.  He has a fever, he's still all barky sounding, he's clearly sick, yet he's still just as active as usual.  Yay.

But, on the positive side - I wasn't able to go run errands or go to the gym, so I had to stay home.  Which was great because I was able to get a lot of stuff done around here that I've not been able to do.  Like dust my bedroom.

OMG.  The dust in our bedroom was horrible.  I am shocked that we did not suffocate in our sleep.  For real.

But it's all gone now.  Ahhh.  And I feel so much better.

Harlie's IEP (Individualized Educational Plan) meeting was Tuesday.  You might remember this post about her getting her hearing impaired instruction in the special education classroom.  Well, we had to make this change on her IEP and take out her sign language interpreter service.  Now that she's trying to talk, she doesn't want to sign anymore.  Which is fine by me.  I still find myself signing to her on occasion, but I don't make her sign back to me.  I'd rather her use her communication device anyway.  Which she usually does without a fuss.  Oh, and we added a communication device implementation plan to her IEP, too.  Just trying to get that more incorporated into her day.  I have to call our local representative with the communication device company to see if he will come to Harlie's school to train some of the staff on how to use it.  I think that will help everyone if they understand the device a little better.  Including me!

We've also been working on getting an FM system for Harlie's hearing aid.  On Monday I took Harlie to her audiologist and she put a receiver or something on the back of Harlie's hearing aid.  Then the school adds something else to her aid when she gets in class and the teacher wears a microphone around her neck so that when the teacher talks, her voice is predominant in Harlie's hearing aid over all the other sounds.

That started on Wednesday or Thursday and that has been going well.  And while I was at her audiologist's office I borrowed a BAHA (bone anchored hearing aid) to try out.  I guess it's not a bone anchored one yet - it's on a soft head band.  And if it works, we'll have to get it bone anchored.  Her hearing impaired teacher has been using it in her class (since it's only Harlie and one other little girl the teacher can focus more on it) and it's been going GREAT!  In fact, her teacher called me this afternoon to tell me that she asked for it first thing this morning.  And that was after only one day!  She puts that aid on her non-hearing ear and it gives her sound through bone conduction.  So, I bet she hears so much better with it on.  I love that she wants to hear and wants to talk!  Progress will come so much easier and faster when she has the desire and determination to do it.  What a difference!!!

So, now I need to work on getting her the surgery to bone anchor that hearing aid.  They won't do it before age five because their skulls have to be a certain thickness.  They install an anchor in the skull and then the hearing aid clicks onto it.

I've also been working on getting her an appointment with the craniofacial team at Boston Children's Hospital.  So, I'll post about that soon.

Oh, and a few weeks ago, I took Harlie to a speech evaluation with a different speech therapist through our outpatient Children's Hospital here in town.  This particular speech therapist is really proficient with her communication device.  I thought for sure that our insurance wouldn't approve it because we are already receiving speech therapy once a week.  Without rambling too much (is that even possible?!) I scheduled that eval a long time ago.  And at the time I was thinking about paying cash for the speech therapist we see on Thursdays, Becca.  Here's who we see now:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
Various - Sharon for 30 minutes 2x per week at school

I was thinking of adding Delisa and paying her through insurance because her appointment would be an hour.  And her office is just a few minutes away vs. Becca's office which is 30 minutes away.  I would still keep Becca because I'm at her office anyway for physical therapy.  Plus, Delisa would be the only one working on her device.

But, after gathering all my info, I determined that Becca was too expensive to privately pay (not through insurance).  And I was thinking that maybe three private speech therapists was a little much.  I mean, she's still receiving speech therapy at school, two times a week for 30 minutes each session.  So, all in all, if I added another speech therapist she would be receiving ST from four different SLPs (speech language pathologists) totaling 3.5 hours per week!

I know it's kinda confusing.  And I thought my decision would be made pretty easy because I thought for sure insurance would deny us adding Delisa since they already pay Becca for ST services.  But, I got a phone call this week that it was approved!  Who knew?  So, now I'm trying to decide if four SLPs is really too much.  I honestly don't know how we'd fit it in her schedule.

But, I'm torn because there's a part of me that thinks if we give her MORE therapy she'll talk SOONER!  And isn't that a BIG deal?  A big enough deal to do WHATEVER you have to do???  Or is it just too much?

So, this is what it would look like:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
TBD - Delisa for 50 minutes (paid for through insurance)
Various - Sharon (30 minutes 2x a week at school)

My gut tells me it's too much.  But my heart says I want her to be able to communicate easier, better, faster, etc.

I don't know.  I guess I'll continue to mull it over.

Oh, and I'm considering co-leading a Daisy Troop for Harlie.  It's part of the Girl Scouts - you're a Daisy for KG through 1st grades, then a Brownie for (?) years, and then a Girl Scout.  And starting out as a Daisy, you pretty much have to form your own troop.  A group of us moms got together, but none of us really want to take on the responsibility of the Leader.  So, we're going to try co-leading.  I have no idea how I'm going to find the time for this.  But, I was thinking that Harlie and I rarely get to do anything fun together, Mother and Daughter.  All of our time is spent going to therapy and doctor appointments, etc.  So, this might be a fun way for us to take the time out to have fun and it will give her even more exposure and practice to playing with other girls her age.

Of course, her repeating kindergarten will throw a little wrench in things - but I'll deal with that later - if she likes it.

So I told Tom all of this and he said, "Just talk to me before you volunteer for anything.  And whatever you do - don't volunteer to be Cookie Mom."  I said, "Oops. I already did.  Volunteer for Cookie Mom, I mean."  What?  That means I'm volunteering to eat them, right?

Oh no.

Seriously, I was thinking that I would rather do that than plan an event or outing or something like that.  Because I HATE planning stuff.  So maybe if I'm Cookie Mom the other moms will go easy on me when it comes to planning shit wonderful activities for our girls to do.

So, our planning meeting is tonight over drinks and dinner.  Eh, we're starting out pretty well so far!  I can be bribed with food and drinks!

Now if I could just get that puppy, that would really round things out well around here!

Okay, that's my week in a nutshell.  I hope yours was as fun-filled as mine was!  Have a great weekend!

Thanks!
~Christy