Tuesday, February 9, 2016

Harlie Update

It has been so long since my last post.  Like FOUR months!  Ugh.  I have started so many posts, but I've never been able to finish them. Harlie has been doing so great that we feel like we have a whole new life.  It's been an adjustment (a great one) that has consumed our lives.  No more time for my computer.  No more time for writing.  And, for the most part, I've been okay with that.

Here's where we are:

Harlie had stoma closure (her ENT in DC surgically closed the hole left by her trach) in early October.  Then, after two years of being on home bound, she finally returned to school on November 9th, as a second grader.  She was so excited!

This is her second grade photo.

October 2015 (9 years old)
I just happened to come across this next photo tonight.

February 2012 (6 years old)
It was taken before we went to Boston for jaw reconstruction.  You can see how little jaw bone she had.  Kinda crazy.

Anyway, she loves going to school now.  What a change from two years ago!  Since her start, she's missed maybe 8 or so days of school for being sick, which isn't so bad, all things considered.  She's really doing great and I can't tell you how much I LOVE getting emails from her teacher that say she's had a great day and they are loving her progress!

At first, she went from 8am to 11am, Monday through Friday.  She only attended the hearing impaired class.  But, in February, we added another hour to her day.  So, she goes to her general ed class for writing and then she goes to lunch, then the bus brings her home at noon.

The school found a nurse for her three days a week.  So, on those days I take her to school, and turn her over to the nurse, who stays with her, rides on the bus with her, and then the bus returns the nurse back to school to get her car.  On the other days, I take Harlie and Brandy to school and drop them off.  And then Brandy rides the bus home with her.  She also still has a teacher that comes to our house some afternoons for more support.

Having the school provide a nurse for a few days has been very helpful to my schedule.  On those days, Brandy gets Harlie off the bus and stays with her for the afternoon, so I can work.  Yes, so I can work.  At a job.  Not at home.  I'm aiming for 10 hours a week.  But, I don't think I've been able to do that yet.  But, I'm getting closer, which is good.  It is so hard to believe that it's been nine years since I had to give up my career.

It's so funny how life works.  I had just made the most money I had ever made, we sold our house and bought a new one (well, new to us, I mean) with the intention to remain a working mom for a while and BAM!  I left work one day, and was never able to return.  That would have been helpful to know before we bought this house.  Yeah, haha, so funny.

Anyways, back to how great everything is...

Even though she isn't sporting her trach anymore, I was still nervous about throwing her in a general education classroom.  I might have forgotten to tell you that the school agreed with me and they put her back in second grade again.  I was really impressed with her IEP team and how they all wanted what's best for her - and that we were all on the same page about what the "best" was!

So, I voiced my nervousness to her teacher and vice principal (totally in love with that woman!) and they said we could talk to the class to prepare them.  So, in the end of January, I went to her school and her hearing impaired teacher, the VP, the school counselor and me went into her second grade classroom.  Her teacher read the book we made for her class two years ago called, "My Name is Harlie."  It went great.  Although I was a real nutcase and said something totally stupid like, "she's worked really hard to be in school and it's a blessing to be here" or something like that.  As if any kid in that class could be capable of being grateful for being IN school.  I'm rolling my eyes at my own idiocy right now just thinking about it.

Anyway, the kids were cute and the VP said something like, "So, boys and girls, do you think Harlie looks scary?"  And they were all, "NO!"

Yay!  One girl raised her hand and said she sat next to her in an assembly the other day.  Super cute!

The book that her teacher read was written right after we went to Boston the first time for her jaw reconstruction.  So, I gave an update and told the class that all was successful and that she got her trach taken out.  But, I told them that you can still see a scar from where it was, but that it doesn't hurt her (Kids are usually bothered by something if they think it hurts another child.)  It was interesting to me that a little boy asked how long she would have that scar.  I told him forever.  Along with the other 18, but I didn't tell him that.  :-)

Since she was going to go to lunch with the class, I thought I would try to send her with yogurt so she would have something to do while the other kids were eating.  I can't believe it, but she has eaten her yogurt every day at lunch!  The whole eating by mouth thing is a complicated issue mixed with my emotions about the whole thing that I really just didn't want to deal with.  Over the years I've been SO excited about her swallowing and eating and thought so many times that her eating that one meal was going to change the course of her future.

I was wrong. She had her good days.  But more bad ones, probably.  And ultimately, after many years and so much hard work I had to finally accept that maybe eating by mouth isn't all that it's cracked up to be.  She's happy without it.  I should be, too.  You can't have it all.  You win some, you lose some. Pick your battles.  You get my point.  

And while her eating yogurt at school is fantastic, I have to keep it in check.  I no longer have that emotional energy to spend like that (getting my hopes up SO high, just to come crashing down again).  And she can't chew.  We'll have to work on that with help, I'm guessing.  So, I'll give her smooth foods for now and see what happens.

Another HUGE thing that deserves it's own post is that she is taking SWIMMING LESSONS!  One of the reasons why I haven't blogged in so long is that I'm having trouble downloading my photos onto my computer.  So, for example, I want to post a photo and video clip of her going under (what a big deal!) but I don't have it on this computer.  So, I will have to fix this situation and get a post up about her swimming.  Only something we dreamed of for NINE years.  No biggie.  ;-)

Well, that's a start.  I must admit, I missed talking about her.  And she's been so funny, too.  Her communication skills just get better and better every day.  In fact, the other day she was able to tell me that a boy in her class wore a We Heart Harlie shirt to school.  I can't tell you how incredibly cool it was to ask her how school was and have her be able to tell me something about it.  So, to the mom of that little boy, thank you for buying a shirt!  I know it makes her feel so loved!

Hopefully I'll post again - sooner rather than later!

Thank you and much love!
~Christy xo


Susan said...

Ahhh Christy, it's great to read this post and know your family is doing so well. I'm glad the school thing is working out. I totally hear you about the computer issues, I was there for years I swear. Every time I made space it filled right back up. We finally had to install larger hard drives. What a pain. It makes blogging difficult. Hope you get it worked out. XOXO.

Robin said...

Can't believe it took me 5 months to read this posting, but i can so relate to how life takes over and you don't find the time to blog as often and it actually means things are mostly good! Faith took over her blog about 2 months ago, but I might blog again during her next surgery (still trying so hard to get her airway big enough to decannulate).
It's so wonderful to hear the details about Harlie's progress, she sounds like she is doing amazing. We are especially jealous and excited for her that she is able to do swimming lessons - it's Faith's biggest motivation for getting her trach out!
One of these days we are going to get these girls together!!
BTW - did you see "Two in a Million: A face like mine?"- it's about 2 kids with Goldenhar meeting each other. It made me sad to listen to their experiences dealing with bullying which we have not really experienced (staring of course), but otherwise could relate to almost everything else.
Take care,

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