Monday, January 28, 2013

Harlie's off the O2!

Lots to update...

First and foremost - Harlie is WELL again!  Woo Hoo!!  We went to see her pulmonologist on Thursday.  He said that her culture (that they took when she was in the ER last week) came back positive with pseudomonas.  They guessed that was the case, which is why they put her on the extra antibiotics.  So, at least the GI issues weren't for nothing.  Anyway, he said he didn't think it was pneumonia - he thought her low oxygen saturations were due to the mucus plugging that the pseudomonas caused.  Whoever read her x-rays that night in the ER might have only looked at the x-ray taken, without comparing it to her previous images they have in the computer.  I think due to her lobectomy, her right lung always looks a little hazy, which can be misread if you don't know Harlie's history.  Regardless, I'm so happy to say that she's off the supplemental oxygen and that she's her happy, spunky, energetic self again!

Harlie's next surgery (when am I going to stop saying that?!?!?) is February 12th.  It is her second stage of her BAHA placement (or whatever you call it).  The surgeon will place the abutement (the thing that holds her hearing aid on her head).  In the image below, the processor (hearing aid) is the black box to the left, the abutement is the round thing in the middle, and the titanium piece is already in her skull, under the skin.
The abutement is screwed into the titanium and the surgeon will destroy (?) the hair follicles around the area, so it stays clear and doesn't interfere with the BAHA.  After this surgery, we wait six weeks for it to heal before we can use it.  I can't wait!!!  She's been SO good with her soft band BAHA, so I can't even complain about that.  It's not a fight, she doesn't take it off, in fact, she asks for it.  But, it will be nice for her not to wear the head band anymore - fashion-wise, of course. ;-)

Anyway, I was a little worried that her lungs would need more time to heal before she could go under anesthesia (especially since we thought it was pneumonia).  So, I asked her doc about that when we were there on Thursday and he said she's good to go.  Woo Hoo!!

I have more surgery news to tell you about, but I'm going to have to save it for later... it's going to have to be it's own post and this one is already going to be too long.

So, back to Thursday again, I asked Harlie if she wanted to go back to school and she immediately, and excitedly said "yes."  So, Friday, she FINALLY returned to school.  Happy faces all around (especially MINE!).

And for her first day back in forever, she was fairly cooperative and willing to work.  Her teachers said she had a great day and they were all so happy to see her back.

Speaking of her teachers...

I cannot say enough good things about her team this year.  Seriously, I am SO incredibly grateful for all the educators that care about Harlie.  She is not an easy child to teach - and they all work so hard to find what works for her.

A few weeks ago, we had a meeting about her communication.  To try to summarize, we were trying to figure out what we wanted to focus on as far as how she communicates to us.  So far, we've really been accepting whatever way she wanted to communicate, whether it be sign, verbalizations, or her communication device (talker).  And, that just wasn't working.  The main problem is that her sign and verbalizations are just not able to keep up with her mind.  So, it's getting more difficult to test her or assess her at school, without her being able to communicate what she knows.  And that's clearly a problem - that will only get worse over time.

So, we all agreed that she CAN use the communication device.  It does take a lot of time, but she will get quicker and more efficient after lots of practice.  When it snowed, she used the device to say, "I want sled."  We haven't used the word "sled" in a long time.  So, either she remembered where it was from a long time ago, or she knew how to find it.  Either way, it proves that we need to commit to this device and really reinforce its use - all the time.  It's not easy, though.  Often times, we know what she wants without having to use it, but that will not help us down the road.  We have to teach her that using the device is the standard.  And she has a lot of people in her life.  And we all need to be on board.  And that's not so easy, either.

The person who got us the device (Rachel) a couple of years ago has been working on getting someone from the company who makes the device (Prentke Romich) to come to the school and do a training session.  That hasn't been easy, either.  So, she thought of another idea, and contacted a speech therapist within our county who knows Harlie's device really well, and knows how to program it.  And she was willing to come and show us a few things to make the device less intimidating and more usable for us.   Can you imagine having to organize all your vocabulary on paper?  How would you do it?

So, we had that training session today.  We spent two and a half hours going over stuff.  I know I've been saying "it's not easy" a lot, but, it's not easy to know where to add new words.  Tom took Harlie to the car wash this weekend and I wanted to add that button.  But where does it belong?  Under the washing category, the car category?  I ended up putting under cars.  But then Rachel suggested putting under "places."  Of course!!!  I forgot all about that category.  So, I need to change that.  And I need to spend more time studying the device myself, too.

It was a very beneficial session.  And I just cannot say enough great things about everyone that was in that room.  So many times I am reminded just how unique she is (like when someone asks a question about how to teach her something, and no one really knows the answer).  In a room full of special education teachers and/or therapists, that's a little scary.  So, this is not easy work for them.  But, despite that, they were all there, taking their valuable time to learn/teach something that will help Harlie communicate.  I want to hear what she has to say without me giving her the words.  They are helping her to get there.  What a gift!!!  How can I ever tell them how much their work means to me, to Harlie to our family?  We are so, so lucky to have them believe in Harlie and her potential.

It was also comforting to hear them say that this device is really only temporary.  And that she will be a reader and writer one day.  And when she can do that, she will type what she wants to say, which will be a different device.  Wow.  Crazy to think about that.  But, crazy good, I guess.  Well, aside from actually talking.  That would be my first choice.  But, I would totally take her typing away, like a typical teenager texting.

Another exciting development as far as her education goes is that I hired her teacher of the deaf from a couple of years ago to work with her privately.  She is the one that thought of the My Name is Harlie book and helped me write it.  She left the county and started her own company.  The best part is that she will come to our house once a week to work with Harlie.  And she already knows her current team, so they can communicate what they are working on in school so she can concentrate on that, too.  And she came to the meeting today, too, so she can incorporate the device into her sessions, too.  How awesome is that?  Just can't say it enough, I am so appreciative of all their hard work and dedication.

Okay, that's it for tonight.  I've already started working on my next post - which I'll hopefully have up tomorrow.

Thanks for reading!
~Christy xo


Paula Haley said...

It sounds like Harlie has such a wonderful and caring team of educators. That is just awesome! I can only hope for that for our daughter, Lily's future :)
I have been following your blog and it has helped me learn, deal and not feel so alone. It is tough to find others that have a child with Goldenhar Syndrome that can relate.
Lily is 8 months old and i am still new at this but have read everything that I can find and we have now settled in a routine.
Lily is beautiful and amazes me every day :)
I recently sent you an email with my story and some pic's. did you receive it? If not, I can resend.
Hoping to keep in touch
Thanks for reading

Susan said...

WooHoo for that! It's good to know it wasn't pneumonia, since that explains why she wasn't acting herself. My fingers are crossed that you get a good sleep study.

It's great that you are getting some help with your AAC. If you can get the software to make the changes/do the programming on your computer, that is easier/faster if you have a large amount of changes to make. I used to have a Vantage, made by PRC. I just spent 9 hours programming Ainsley's device yesterday because I'm going to start sending it to school (I changed the number of buttons on every page in the vocab). We too are at the point of "upping" our usage and "taking it to the next level". Harlie is going to rock at it once she gets in the habit of using it!