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

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

Ukrop's 10k info and other stuff

Well, now that Saturday’s Ukrop’s 10K is fast approaching – yes, THIS Saturday – I thought I would talk about it a little.

First, I would like to say that I have always been uncomfortable talking about our money situation – much less asking for donations, etc. to The Harlie Fund. So, when Maria Candler with James River Grounds Management, Co. approached us with her fundraising idea to incorporate the Ukrop’s 10K into a fundraiser for Harlie, we were very overwhelmed, and perhaps a little quiet. (See 02/06/08 entry if you don't know what I'm talking about).

Well, we are getting excited now. Tom’s been training and reached his weight goal of 175 today (his goal was to be 175 by race day). YAY for him! Although, I don’t think he should lose one more pound, or he’ll be too skinny in my opinion. All my family and friends have gathered around to support us. And, even people we don’t know have been out raising funds and/or will be running and cheering on Saturday. I cannot begin to express what it feels like to know that so many people (friends, family and especially those we don’t even know) have been touched by Harlie’s story and have gone out of their way to help her – and us. Seriously, there simply are no words.

There are so many times when I could be angry at what has happened to my sweet Harlie and all the many pains and battles she has and will continue to endure in her lifetime. But, it seems that the good in the people around us takes over and makes me so thankful. I really don’t have the time, nor the desire to be angry. My faith in humanity is restored on a regular basis. 

I’ll give you just a few examples. 

Maria Candler for one (that’s easy) for organizing this whole event. Then, a girl I met just a few months ago, Kim. I’ve mentioned her a few times. Her daughter is Sadie, and has a CHD, too. Well, she e-mailed me the other day and said that a friend of hers in California was having a neighborhood fundraiser for Harlie. Huh? What? Are you kidding me? It is times like these that I know this world is full of good people. And that’s what makes me not so afraid of Harlie’s future. She will touch good people for the rest of her life and she will be fine.

Enough of the mushy stuff (for now). Now, for the race details. We are going to meet around Birch and West Franklin (Monument turns into W. Franklin at Stuart Circle) sometime around 8am. If you are running or walking, please look for us around this area (it is about 1/3 mile from the finish). If we get there early enough, hopefully our group can be pretty big and obvious. Parking is, of course, on your own, wherever you can find a spot. As the runners finish the race, we’ll head on down to the finish at Monroe Park. They will have letters posted so you can meet your family and friends according to the participant’s last name at the end. I was thinking we could all meet under the Z to make it easy for all of us. Then at 11:30, we will meet Maria and the James River Grounds group, at the fountain in Monroe Park.

I know it will probably rain, but we’ll be there regardless. I am really looking forward to it. Good luck to the runners/walkers and know that you will have a good cheering crowd to support you.

Now on to other stuff: Our big news of the day is that Harlie got her new walker today! Traci (her physical therapist) surprised me with it today when she came for PT. It was delivered just a few minutes after Traci got here. But they delivered the wrong thing. Then the guy was nice enough to run over and get the right one and bring it right back over. It swivels VERY easily. So, her biggest challenge won’t be making it turn, it will making it stay straight! As soon as she started walking with it, she was going in circles. Hopefully it won’t take her long at all to get the hang of it.

We also got her Go Talk communication device today. Our speech therapist (Beth) came for ST today and brought me the photo pages that I made. We don’t have a color printer, so I made the pages with our photos and then e-mailed them to her and she printed them out for me.

I will take some photos of the Go Talk so you can see what I mean. It just might take me a couple of days to do it. I did get some video of Beth teaching Harlie how to use it. That is not an easy task, let me tell you. Repetition is key, and that can be very draining – for all involved. But, it seems that she catches on pretty quickly. It was very nice to hear Beth say that she thinks Harlie is smart. They’ve told me all along that her intelligence shouldn’t be affected by her medical issues. But, sometimes it is hard to tell when they are behind developmentally.

Tomorrow we are off to Children’s in DC for an ENT appointment. Well, that’s it for tonight.

Thanks for checking in!

Take care,
Christy

Fundraiser for Harlie

One of Tom’s clients (for those of you that don’t know, Tom is a kitchen designer at Classic Kitchens of Virginia) has taken it upon herself to go above and beyond for our sweet Harlie! She has organized a wonderful fund raiser for The Harlie Fund. She is Maria Candler and she is the President of James River Grounds Management, Inc. Below is a copy of the letter that she sent to all of the clients and vendors of James River Grounds Management.

Needless to say, Tom and I are overwhelmed by their compassion and generosity. Seriously, there are just no words for how much we appreciate this. If you want to run or walk in Harlie’s honor, just let me know. (Tom already started training.) I believe Maria is getting t-shirts made for the event. So, if you walk or run it, and you want a t-shirt, let me know and I’ll get the order to her. Here is the link to register just in case you are interested:

http://www.sportsbackers.org/10kmainpage.htm

Okay, here’s the letter…

January 29, 2008

Dear Valued Partner,

Whether we are ready or not, 2008 is here, and James River Grounds Management has an important New Years resolution that involves your support! On April 5th over 25 of our staff members will be running (or walking) in the Ukrop’s Monument Avenue 10K. In alignment with our resolution of giving more of ourselves to our community, we will be running in honor of a very special little girl.

We would like to tell you about Harlie Caroline Holton. Harlie was born on September 25, 2006. Her parents knew she was going to have challenges, but no one was prepared for the road that lay ahead. Harlie was born with an exhausting list of birth defects. The most emergent being a complicated heart defect called Congenitally Corrected Transposition of the Great Arteries. In basic terms, her heart is backwards. She had her first open heart surgery at just four days old, her second at six months, with a third to be at three years old. In addition, Harlie was born with an underdeveloped lower jaw and missing bones, forward low set ears, a dysmorphic left ear with no canal, left eye defects, vertebral anomalies, missing ribs, misshapen skull, anoperineal fistula and a lung defect that required the removal of most of her right lung. This is just what has been uncovered so far. Harlie has undergone seven surgeries and spent over four months in hospitals. This spring, she will face her eighth and ninth surgeries, as doctors work to stop her chronic vomiting so that her jaw can be reconstructed. The correct jaw construction will allow her to breathe and swallow normally thus eventually eliminating the need for a tracheostomy tube and feeding tube in the future. In spite of everything, she is sweet, happy, smart and beautiful!

What is most moving about Harlie’s situation is that her parents (who don’t ask for anything) have the most amazing attitudes toward these challenges. Their outlook has been absolutely inspirational to all of us here at James River. When reading the above list of challenges they have faced, it would be easy to understand how a parent in this situation could feel a little angry or cheated. But not the Holton’s. Not only is Harlie a blessing to them, but they truly feel honored to have been given the opportunity to raise her. The following is an excerpt from Christy Holton’s blog dated 1/20/08:

“…one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth… I am incredibly thankful. Every single day Harlie completely amazes me. Now isn’t that something?”

We think it is. Caring for Harlie is more than a full time job. The equipment and medication necessary to keep her nourished and safe are unbelievably expensive. The surgeries that she has undergone and those that she will continue to face throughout her life will require her parents and older brother Murphy to sacrifice greatly. Furthermore, the family will eventually be required to travel out of state in order to receive the medical care that Harlie will require. In Christy Holton’s own words… ”I fully expected to lose my daughter, but then she was born and she had so many more problems than we ever imagined, yet she was so strong and surprised everyone with her will. I am truly honored to be her Mother. She is worth every ounce of effort we have to give to keep her safe and sound. She has changed our lives forever.”

As a tribute to Harlie and her family’s amazing spirit, we at James River Grounds Management are privileged to run (walk) for her benefit. What we ask of you is to make a donation to the Harlie Fund, a legal trust set up for her ongoing care. For every dollar raised, James River will match the donation.

Please make your check payable to The Harlie Fund.

Mail to: The Harlie Fund c/o James River Grounds Management, Inc.
11008 Washington Highway
Glen Allen, VA 23059

Please try to send your donations by April 3rd. We would like to honor the family with all the donations and a list of donors after the race on April 5th. For more information on Harlie, please check out her website http://www.babysites.com/sites/harlie/. For more information about the donations or the race please contact Cerise Estep, 804-550-3500. On behalf of the staff at James River, thank you in advance for your generosity in supporting this amazing little girl.

Sincerely,
Maria P. Candler
President