Sunday, September 23, 2012

Good stuff

Thursday night was back to school night at Harlie's school.  I can't remember if I mentioned it or not, but we made those "My Name is Harlie" books again and gave one to each student in her class.  It is weird to walk into a room and know that everyone knows who you are, and you not know anyone.  I just want to hide in situations like that.  So, I was a little nervous about going.

Anyway, I was shocked to hear that they said she was doing really well (for her, anyway).  It is so hard to find something to motivate her to do something she doesn't like, or something that she has to work really hard to do.  Most kids would be motivated with some M&Ms or goldfish, etc.  But, that won't work for her, obviously.  So, she makes her teachers work really hard.

So, I couldn't believe it when I saw this...


How freaking cute is this little robot?!  Her HH (hard of hearing) teacher said that the class drew these robots together, following instructions like, "draw a square in the middle of your page."  She followed all the instructions with no problem!  Woo Hoo!!!

They have a Doodle Diary they have to write a word in and draw a picture of every morning.  Here are her drawings so far...





I am so proud of her!!!  That monster is colored like Sully from Monsters, Inc.  Which makes me feel a little bit better about an incident on the playground the other day.

Harlie's nurse texted me to ask me if she could tell a little boy to go away if he was bothering Harlie.  He called her a monster.  I told her, yes, please tell him to go play elsewhere if he can't be nice.  No one would argue with that.  But then she said that a little girl that was sitting there told the little boy that she wasn't a monster.  And he went away.  Terri said that she didn't think Harlie was paying any attention to him.  Of course, it's hard to tell because it's normal for HH kids to look away when they don't want to "listen."  But, I'm hoping that maybe when she heard the word "monster" that she thought about Monsters, Inc.  Maybe?  Either way, she didn't and doesn't appear to be upset about it.

The next day Terri said that the same little boy came up and asked her a bunch of questions, like "can she talk?"  Terri said, "yes, if you listen very carefully, you can hear her."  Terri said that it looks like he has some issues he's dealing with himself.  So, we're cutting him some slack.  He could certainly have challenges that you can't see.  And the fact that he's asking questions is good.  He's curious.  He doesn't understand what's going on with her or what it all means.  He's probably never seen a trach before.  And once his questions are answered, he'll probably feel a lot more comfortable around her, and won't call her a monster.

But, before I learned that I went to the CCAkids website.  Earlier in the month I saw on Facebook that September was National Craniofacial Acceptance month.


So, I think I might make a flyer about why kids tease (info provided on that website).  And I think I want to do something next year since she'll be in first grade.  Even though these kids have already been introduced to Harlie in person, or through her book we provide to the classes "My Name is Harlie" the questions will change as the kids get older.  As they grow, and become more aware, they will notice more, or different things and their reaction will change, too.  They always seem better when their questions are answered.  So maybe I can make things easier with a little flyer.  Plus, even parents of typical kids could benefit from that information.


I've had some requests to put something on the blog, too.  So, I'll try to work on that.  The bottom line is that I want to do everything I can to make school a better experience for her.  I haven't been able to protect her medically - maybe I can make up for it, emotionally.

We had Murphy's back to school night the week before.  Here is a drawing we found in his desk...


I think it is so cute!  He drew himself walking Rooney.  He's wearing his favorite skeleton shirt.  Rooney's leash is green and the little bag carrier is blue.  I think he did a great job!

Speaking of Murphy...

Murphy's first day of 3rd Grade.  

Murphy holding a snake Tom found in the yard.
Murphy and Harlie during a walk.
This was a really good moment at home... Murphy and Harlie doing their homework together.  They kept on giggling and getting distracted with each other, but I loved it.


A couple of other things...

I secured some awesome private speech therapy for Harlie and her first session is tomorrow!  I was definitely worried about this.  I know that Harlie could really benefit from someone who can use Talk Tools.  They are plastic shapes that help teach her how her lips should form to make certain sounds.  Her last speech therapist used them on her and it was really good for her.  But, I thought for sure that she would be booked.  She's awesome and it's always hard to get on a schedule with a therapist in high demand.

So, I called and emailed her.  And not only did she find us a slot - but she hooked us up with another ST that is further along in her Talk Tools training than ours.  So, the two STs will be working with Harlie at the same time!  They even added a session in their day to accommodate Harlie.  I just can't believe it.  My conversation with her was great.  She believes in Harlie and her ability to learn how to overcome her challenges.  I am constantly reminded how lucky we are to have such great therapists in our life.  Thanks, Amy (ST), Allison (Feeding) and Traci (PT)!!!

Unfortunately, these STs are private - so no insurance.  And these hard working therapists do not come cheap.  So, for people wondering what we do with the money that is raised through the We Heart Harlie fundraisers - that's a huge part of it.  If you've donated before, you are helping teach Harlie how to TALK!  There's just no way we could ever thank you enough for that gift!!!

We now have our follow-up appointment to go to Boston.  We go on October 19 (also where the We Heart Harlie money goes).  Hopefully they will be able to make us feel better about where we are and where we go from here.  I think we are going to have to spend the night.  Considering our history with the airports, I think it's too risky to have to rush - especially on a Friday - and we don't know exactly when we would be able to leave the hospital.

Well, I think that's enough for this post.  I finally downloaded the photos from our camera (from the hospital) and will post some next time.

Thank you so much!
Christy xo

2 comments:

Anonymous said...

I heard today is Harlie's Birthday. Ron's dad's birthday was today. So Happy Birthday Harlie. We are so proud of you. Have a wonderful day. Love from Pgh. Ron and Sue

Susan said...

Those drawings are SO fabulous! I'm glad Harlie's doing great at school. I don't like treats for incentives anyway.

Happy happy birthday to Harlie! XOXO.