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

The Harlie Crew

I would like to welcome two new members to The Harlie Crew:

Fannin Construction, LLC

and

Henry Briggs, Realtor

I just can't thank you enough for your generosity and kindness!

To our new and existing members - thank you for wanting to be a part of The Harlie Crew!
~Christy

Ronald McDonald House and THE HARLIE CREW

I was so sleepy the other night, that I didn't finish telling you everything I wanted to.

Some potentially exciting news!  A while back Tom contacted the local Ronald McDonald House about donating some older work computers.  Of course they spoke about how we stay at the RMH in DC.  And that he was a kitchen designer.  She mentioned that they wanted to renovate the kitchen there.  Well, they contacted him this past week and asked him to bid on the project!  Of course, because they have a committee, they sent out 15 letters total.  As of Friday, only three (including Tom) had responded showing an interest.

I am sure there will be cheaper bids from other contractors.  But, I really hope that they look at the fact that Tom has stayed at a RMH off and on for four years now and he understands their needs better than most.  Because they house numerous families (the Richmond RMH has nine rooms) they need to have lots of storage that can be sectioned off for each family.  And then there is storage for food that is donated for all families.  Plus, there are washing issues - I'm thinking more smaller dishwashers vs. one large one.  Anyway, you get the point.

So, keep your fingers crossed that he can do the project!  It would be so awesome to do it since the RMH holds such a special place in our hearts!

And speaking of RMH, the one in DC built a new house and it opened in December!  It doubled in size and how has 26 rooms with private baths for each one!  YAY!  So, when we go in March (ugh) we will get to stay there.  Since they just opened, they registered at a few place for donations - like Bed, Bath and Beyond, Target and Amazon.com.  So, if you are ever looking for a charity (other than The Harlie Fund, of course) that's a great one.  And if you don't want to do money donations - you can always make food for the families staying there.  I can't tell you how awesome it is to come "home" after a long day at the hospital to home cooked food!   And brownies.  Especially brownies.

And speaking of The Harlie Fund... more exciting news I've been meaning to share with you...

You might have noticed the new section in the left column of the blog called THE HARLIE CREW.  Bill Jeffries of Kane, Jeffries, Cooper and Carollo, LLP (my sister's boss, and my boss when I can work - that's my part-time job I've been at for over a year now) started it a couple of months ago.  It is a group of "Harlie Fans" that have committed to make a monthly contribution to The Harlie Fund.  Isn't that the coolest???  And if a crew member wants me to, I can put a link from their name to their website.  So, maybe that could help you out, too!  So, contact Bill Jeffries if you are interested!

And I forgot to tell you that after feeding therapy on Thursday, as we were leaving, Harlie turned around to give the prizes that she earned for self-feeding, back to Allison.  It was so sweet!  Allison told her that she earned them, so she gets to keep them.  That girl asks for nothing material.

And, one last thing for this post (I'm going to make a new one for Friday's events)... I just want to thank our very special Santa Claus for the beautiful gift!!!!  I can't tell you how much I love it.  I actually got two things!  Anyway, I hope you know how incredibly thankful we are!  And how lucky we feel!  And I would love to thank you in person if you ever want to tell me who you are!  We are so incredibly blessed to have such wonderful support in so many ways!  And we are just so blessed to have Harlie.  And there isn't a second that goes by that I don't think about that.

Thank you all!
~Christy