Friday, April 3, 2015

Harlie Update

I haven't posted about life in general lately.  Well, it's been pretty great.

Harlie is really fantastic.  The best she's ever been - hands down.  Every day she surprises us with more and more words, and demonstrations of her growing imagination.

After eight long years of fighting something all the time, she is finally healthy and able to explore her world.  And oh what fun it is for all of us who get to watch her do it!!!

I feel like a new mom again.  I should have written stuff down as it happened, because I just can't remember it all.

Here are some examples:

While the boys were "helping" me open some suction catheters (aka making a huge mess) she yelled from the kitchen (never taking her eyes off her ipad), "Keeping working, boys!"  Where does she get this stuff?  Honestly, probably from Spongebob or Breadwinners.  Hey, when you just want your kid to talk, you're not so picky.



Harlie got out the construction paper and cut out a heart.  Then she drew a picture of me and her on it.  As she was doing it, she was trying to hide it and was singing on the way to my office as if to say, "nothing to see here."  She has finally realized that she loves me.  And she wants to tell me and show me several times a day.  This is brand new.  She's been telling me that she loves me for several years.  But, it's like she really knows and understands it now.  There is more to this story, and I'll share it later.



She asked me how to spell "strawberry."  And then wrote it down on the whiteboard.  I know this doesn't sound like something that I should brag about.  But, it is!  Learning how to read is proving to be extremely difficult for her.  She says, "I can't do it" and "it's too hard."  Cooper is already reading circles around her and it makes her very sad.  It breaks my heart to see her tear up when Cooper reads at night.  She just seems to know that this is not the way it's supposed to be.  Anyway, after all the struggles that come with her learning to read, it is amazing for her to ask how to spell something (I've never heard her ask that before) and then want to write it down.





One night, she went upstairs, and put on her pajamas, then we heard some clunking down the hall.  And Harlie appeared with a crown, a necklace, bracelets, rings and high heels.  She wanted to play dress up.  I have kept stuff, waiting for this day.


She's being more creative.  She used a fingernail file as a measuring stick like at an amusement park. She measured her La La Loopsy guys and drew a line on the file so they could ride the ride.  She also is taking toys from different sets and using them together to create her own set.  While the organizer in me is struggling, it's awesome to know that she is remembering what she has, where it is, and using it in other ways.  All good things.  I just have to repeat that over and over when the house is a mess.


She has been playing with one of her baby dolls a lot lately.  She really goes through phases with her toys.  Anyway, she's mastered multitasking,


She walked around for days like this...



She likes to give her nebulizer treatments.


And apparently, she had to take her to the hospital.  This is her being the mom and Cooper being the doctor.  Although, for the record, I've never hung out in the hospital in my pajamas.




When Cooper performed some medical procedure, she flinched and turned away.  Oh, she has noticed way more than I thought.  In my defense, it is very hard to see your kid get hurt (and even help others hold her down) so it can be a reflex to turn away.  Just saying.

I am going to take it as a good sign that she's come up with this game of "hospital" without having any uncontrollable ticks.  Perhaps that means that she doesn't have PTSD (at this time anyway)?  I, however, do not think I have fared so well.  I have to admit that watching her do it made me tick a few times.  I have more moments of bitterness and anger than I would like to admit.  I always struggle with those negative feelings because we have so, so much for which to be grateful.

Then I think about the last eight years and I remember all the hard, all the seemingly impossible and, honestly, I really don't know how we've all survived.  I really don't. There is always a fight in my head between, I am so grateful.  We are so lucky. and We have been so abused. There are so few people who have been where we've been and I feel so lonely. So few people realize how hard life can really be and they should try to feel more grateful, too. I'm not always proud of my thoughts, but there you have it.

Facebook doesn't help.  One day, I was scrolling through, and came across a post from a mom whose child just had another surgery.  It was a big one, and he's really been struggling in his recovery.  Like, really struggling.  The kind of struggling that most people don't even know about.  He's had to have numerous subsequent surgeries to get him balanced again and every day, her posts made me want to hug her. This particular post (I hope it's okay that I'm talking about it) was about how his head was so swollen he couldn't close his eyes and, to protect his eyes, they had to stitch his eyelids closed.  I had to stop and take a moment to think about her and to be grateful that I've never had to see Harlie's eyes stitched closed.

The very next post was from a parent of a young healthy child, who had a normal, every-child-that's-ever-lived-has-had-it-and-it's-not-life-threatening-sickness and they were struggling with that.

Seriously?  How am I supposed to deal with that?  The second parent doesn't even know that it could be worse.  How are they supposed to feel grateful that their child's eyes have never been stitched shut?  I see it all.  And it is really hard to reconcile in my head.  The only answer is to limit my time on Facebook.  Which, I have done.

Anyway, back to positive stuff... Harlie is really coming in to her own.  And we are loving every minute of it.

She asks questions!  The other day, while discussing farm animals with Brandy, Harlie asked, "What's your favorite farm animal?"  Another one was, "I love strawberries." And then she asked me, "What's your favorite fruit?" For the record, she's not terribly familiar with the actual taste of a strawberry.  I think she says she loves them because of the movie, Cloudy with a Chance of Meatballs 2.  If you haven't seen that insane movie, there is a cute little strawberry character.  Regardless, it's conversation and a cute one at that.

When Tom walks in the room she cheerily says, "Hi Daddy! Whatcha doin'?"  It makes me laugh every time I think about it.  She has such a cute little voice.

Medically, she is great, too.  She is capped all day, every day and off oxygen during the day.  We only turn it on when she's sleeping.  Because she is capped, she hardly ever needs to be suctioned.  We really need to get a sleep study done!  So, I emailed her ENT in DC and gave him an update on Harlie and asked him about scheduling a sleep study.  He immediately replied and said he would request one (it takes two weeks just to get a date!) and we would have an appointment after (instead of us having to drive up there before).  He is so considerate!

We've tried to schedule sleep studies before.  We've had at least two dates, but Harlie always got sick and, to be honest, I just didn't believe she would pass.  So, it's just never happened.  One thing that has been holding us back a bit, is insurance.  Harlie is on the medical technology waiver for Medicaid (because she has a trach) thus she has no private insurance.  IF she can pass a sleep study and then be decannulated (get the trach out) she would no longer qualify for that waiver.  And, in most cases, would lose Medicaid and nursing completely.  But, Harlie's medical issues are not limited, or due to the trach.  Whether she has the trach or not, she will always have her heart, lung, spinal and craniofacial issues and will always be on/off oxygen.  So, when thinking of losing the insurance and nursing support, there is a huge negative consequence if she is decannulated.  Now that she's home for school, if we didn't have nursing, how would I go to work?  Or the gym?  Or anywhere?  And who would be comfortable enough to watch her since she's still g-tube fed?

So, there has always been a negative side to decannulation that I didn't know if we could live with. Well, a couple of weeks ago, my Medicaid case worker came to do her normal six-month evaluation.  I asked her about it.  And she said that Harlie will qualify for two other Medicaid waivers that will be used together.  IF Harlie can be decannulated, she will help us transition from her current waiver, to the other ones and she assured me the transition will be a smooth one.  She will still qualify for nursing, just not as many hours per day as she gets now.  YAY!!!  I couldn't believe it!  What a relief!

Well, several weeks have gone by since then, and we now have a sleep study date.  It is May 17th.  Now to just hope that she is healthy at that time.  Of course she is currently sick.  She's had fevers for two days and is so junky that she cannot wear her cap.  But, the great thing is that she has been able to maintain her mid-80's sats.  So, we haven't had to give her oxygen during the day, which I think, is remarkable.

She had a quiet night last night (after two nights of being up a few times) so I hope she's turned the corner.

It's time to get the kids ready for school, so I have to run.  I've been working on this post for weeks and there's still so much I have to tell you.

Much love,
Christy xo

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