Tuesday, October 9, 2012

A Good Update.

This post is so long overdue that I have no idea where to begin!

First, I think I'll start with Harlie's overall status.  A few weeks ago I was really down in the dumps about where we were.  I just wasn't prepared for the ten steps back post-surgery.  You might think that after 30 of them I would have the whole thing down-pat.  But, I don't.  Each surgery is a whole new experience.

But, I am so happy to report that Harlie is doing... GREAT!  Seriously!!!  It's like she saw how sad I was and said to herself, "Okay, I guess I should give mom a break, she looks like she's going to crack".

A little more than a week after that post, I could see an improvement in her drooling.  I didn't want to get my hopes up, so I didn't say anything.  After one day of improvement, she would have a day of no improvement.  This went on for about a week.  Then one day, she came home wearing the SAME clothes that I put on her in the morning.  And then I knew!!!  She figured out how to swallow!!  There are no words to describe my relief and happiness.  No. Words.

We see her feeding therapist on Thursday for an evaluation to see where she is and where we need to go from here.  I am so, so happy that she's able to swallow for this appointment.

Academically she is doing great, too!  I don't know which is more shocking - her ability to swallow or her academic progress!

The problem with her academics has been her lack of willingness to participate.  I think most of her teachers (and us) believed she was capable - she just didn't want to show us.  Over a week ago, she came home and the report from her nurse was that she just flat-out refused to do what her teachers told her to do.  Well, clearly, we can't allow that to continue.  Her favorite thing in the world is the computer.  So, I told her she was not allowed to get on the computer that day because she didn't listen to her teachers.  I told her that wasn't allowed and she's at school to learn and work hard and saying no isn't an option.  She was very upset.

But, the next day she listened!  And followed instructions!  Last year she struggled with beginning and ending sounds.  You know, like mouse starts with m.  But, in order to do that successfully, one has to know what "begins with" means and be able to hear the sound m makes.  If memory serves, she started to do it successfully a little bit at the end of the year.

But, look at her now...


I am so proud of her!  And another thing that I've noticed at home is that there is much less of a delay between me asking her a question and her answering.  There used to be a very long pause or no response at all.  She doesn't always answer me - sometimes she doesn't want to.  But, for the most part, if I ask her something, she answers in a timely manner.  This is a huge improvement!  And it seems that each improvement, leads to another improvement... which is a fabulous trend!

Another development is that we were able to get Harlie back on her speech therapist's schedule.  Her ST is awesome and I just knew that she would be booked solid.  But, somehow she found a spot for us and we are thrilled!  She's had two sessions so far, and they have both been wonderful. She's not perfect (Harlie, I mean) and doesn't always cooperate - but again, the improvement in her following instructions is remarkable (in my opinion).  So much time was spent on waiting Harlie out and trying to find something to motivate her enough to do whatever it was that Amy wanted her to do.  But, it seems there is very little waiting now.  And in her last session her not listening was her trying to be funny and joke around with Amy.  Overall, another huge improvement!

Last, but not least... Harlie has been able to wear her cap consistently for the first time since March!!!  A cap is a solid piece of plastic that covers the trach and prevents air from flowing through her trach.  It forces her to breathe - both in and out - through her mouth and nose.  It makes her voice so much more clear and understandable.  Even to herself!  So, learning to talk will come so much easier to her if she can wear her cap more.  I tried the cap on last week and as expected, she yanked it off immediately.  But, I knew she could do it.  So, one day we went to take Rooney for a walk and she wanted to take a toy with her.  I told her she could only take it if she wore her cap.  So, she put it back on, grabbed her toy and walked out the house.  She wore it for 45 minutes straight, with no problem whatsoever.  The next day at school, Terri put it on her at 7:30am and when she got home at 2:15pm she was STILL wearing it.

It is amazing to me how everything is falling into place.  Especially after how I felt just a few short weeks ago.

This little girl...

totally amazes me.  She really knows how to bounce back.

We go back to Boston Children's Hospital on October 19th for our follow-up appointment.  I am now looking forward to hear how they think she's doing and what's next...

I have much more to tell you - the We Heart Harlie 5k, Cooper's birthday (poor kid) and a whole bunch of other stuff... but it will have to wait for now.

Thanks for checking in!
Much love,
Christy xo


Kristen said...

Amazing! AWESOME! Words don't even begin to touch how happy this post makes me!

Susan said...

That's really fantastic Christy! I'm so happy to be able to say I told you so about the swallowing/drooling. Still I know as a parent you can't relax until you SEE the change and know for sure... I wonder if some of the listening changes have to do with hearing? Has her BAHA been activated? Still maybe being sick off and on her hearing was affected? It could explain some of the changes in listening and school work. Whatever the reason it's fantastic and I am so happy for what this means for Harlie! And you...and your family! 100% on sound recognition that is incredible! It's great that you found a motivator, that will surely come in handy! I will be eager to hear what the doctors say on the 19th. Exciting times for Miss Harlie!

I think what you've gone through this past month or so just validates how emotionally exhausting surgeries are as well as simply living the life of a parent to a medically complicated child. It really is a roller coaster ride that you can't get off. Big happy excited (((HUGS))) and XOXO.

Sue Mitchell said...

Awesome post! I was getting worried these past 2 weeks when you didn't post anything - just hoped you were super busy. This was definitely worth the wait. So wonderful to hear of the tremendous progress made in the past couple of weeks. Thanks for sharing.

Ann said...

So happy to hear that things are moving in the right direction for Harlie. Patience ... it eludes us.

Sounds like you are on the up-swing of this roller coaster ride we call "life of a child with medical/special needs".

Love ya'

Christy said...


You were SO right! And you totally deserve to get to say "I told you so!" Thanks for making me feel better and always being there for me!