Updates

So much to say, so little time...

Ear Issues

So, last Wednesday (the 25th) Harlie had an appointment with her audiologist for her regular testing (its been over three months since her last one).  I told her that we've been having some issues with her hearing aid squealing (feedback) at odd times, out of nowhere.  So, she looked in her ear and there is some wax blocking the canal.  She tested her and when she last tested at 2.6, she was .4 this time (my numbers might not be exact, but close enough).  Clearly, the blockage is affecting her hearing a bit.  So, she said that we needed to get in to see an ENT to try to clear it out.

Our goal was to get her a-okay in time for school, which starts Tuesday.  So, Ann helped me get an appointment with a local ENT (Harlie's ENT is in DC, and I really don't want to drive up there for this right now) and we went to see her this past Wednesday.

The ENT said that Harlie's ear tube has come out of her ear drum and, of course, wax has accumulated, blocking her ear canal.  This was Harlie's 3rd ear tube in less than 4 years.  Her DC ENT put it in in November of last year.  It is a T-tube, and is supposed to last longer than the normal tubes.  I asked the ENT why her tubes come out so quickly (none of them have lasted a year).  She said that she must have really thin ear drums and there just isn't enough "meat" to hold the tube in place.  It certainly isn't because she is growing (the normal reason why tubes come out).  Her ear canal is still super tiny, like a baby's.

So, we're putting drops in her ear to try to loosen up the wax in time for our next appointment - on Thursday.  The ENT will try to pull the tube and gunk out in the office.  If she can't, then that means Harlie will have to go to the OR (at some point in the near future), which I would rather avoid.  So, hopefully she can get it all out and get her hearing clearly again.

Nutrition Appointment

Last week (the 26th) Harlie had an appointment with the feeding clinic team.  Overall she is doing great gaining weight.  She weighs 31 pounds, 14 ounces (25th percentile) and she is 36.4 inches tall (3rd-10th percentile).  She gained over two pounds since her last appointment in May - and that includes having heart surgery.  Overall they said that she gained 178% of expected weight gain (so she gained almost twice as much as expected).  And I can see this growth/gain.  Shorts that she could wear at the beginning of summer, she can't get into now.  And I have never seen her outgrow something in one season.  In fact, at the beginning of this summer, she could still wear size 24-month shorts!

Here she is getting measured.  You can see that in order for her to stand straight, one leg has to be bent quite a bit.

And here she is with her feet even on the floor.

That's quite a difference.  And it's a reminder that I must call her orthopaedic surgeon for an appointment!  She wanted to see Harlie months ago.

Feeding Therapy

Feedings were going great until her heart surgery in July.  Once she got home and recovered enough to start oral feedings again, we have been going downhill in the behavior department.  She is eating "well" as far as volume goes - but it is a lot of hard, hard work!!!  And I really feel like I am reaching my breaking point.  I am so close to being ready to throwing in the towel on oral feedings.  I haven't been this "over it" in a very long time.  And if everything else was "normal" and I wasn't using my patience in every other department as well, I could deal with it okay.  But, my patience is already stretched to the limit.

Here's what I mean:

She used to tolerate her HME just fine and wore it all day, with no issues whatsoever.  Ever since her surgery, she takes it off all the time (the HME provides humidity and moisture to the air she breathes and when she doesn't wear it, her secretions get thick and forms mucus plugs - NOT good).  Another benefit to the HME is that when she coughs (this is gross, I know) her secretions go into the HME and not all over whatever or whoever is in front of her.  The HME "covers her cough", if you will.  Well, now she takes the HME off whenever she coughs - which is about a gazillion times a day.  I know this might seem strange - but I think kids with trachs cough a lot more than kids without trachs because that trach is in her airway.

Another negative to her taking the HME off all the time (especially when she coughs) is that she can accidentally decannulate herself (pull the trach out).  Which is exactly what happened on Tuesday afternoon as Brandy was walking out the door to go home.  Luckily she noticed that Harlie sounded "different" and looked closer to see what was going on.  I was on the computer, like any good mom should be.

Brandy told me that she was decannulated and I jumped up and tried to put it back in.  But, it wouldn't go, so I had to get the emergency kit from her diaper bag and start with a fresh trach.  Once Harlie realized what was going on, she was not cooperative in letting me put it back in.  So, Brandy had to hold her arms down while I put a new trach in.  Luckily, she appeared to be breathing okay, so we weren't as scared as we have been in the past.   We were still scared, just not as scared.

So, in summary - this HME non-tolerance crap she's pulling is causing major issues with plugging and decannulation - both things that make breathing difficult.  Whew!  It's a good thing it's not a big deal.  And it is a constant issue.  Truly - a constant issue.  A pull-your-hair-out-go-running-and-screaming-out-the-house kind of issue.  A think-of-a-million-other-forms-of-torture-you'd-rather-endure kind of issue.  Seriously.  I am not exaggerating.

She won't walk any distances - even the same distances she walked prior to surgery.  She really fights the stairs - both going up and coming down.  This produces an agonizing argument every morning and night.  This is one where I have pretty much given in and let her win.  It just isn't worth it to me.  That's not how I want to start off the day, or how I want to end it.  I know I will have to change this - but all in good time.

I know she is capable of potty training.  Okay, I believe she is capable.  But she is not willing.  And no matter how hard we work, if she doesn't want to be potty trained, then she won't be potty trained.  Again, this is a battle in which I surrendered.  We've been working on this for well over a year and I just don't have it in me anymore.  She will do it when she wants to and that's that.  Of course, that doesn't make accepting the situation any easier (on our part, I mean).  I still get my hopes up when we have a good day and they come crashing down when the next day is like the good day never happened.  It is very frustrating.

Communication suffered after surgery, as well.  She went several weeks where she pretty much refused to communicate in any way.  That has definitely improved - but not as good as it was prior to surgery.  The other night I was the most frustrated with her lack of communication skills than ever.  She wanted something from downstairs (as we were getting her ready for bed) and she wouldn't sign or use the device to tell me what she wanted.  For all I know she just wanted to be downstairs.  But, I really don't think that's likely, because she has never wanted to go back downstairs once we've gone up for the night.

So, then I thought she obviously doesn't know the sign for what she wanted or how to say it on the device.  I don't know.  In looking back maybe I should have taken her back downstairs to let her show me what she wanted.  I was thinking at the time that she was probably stalling and I was (quite frankly) super tired and I didn't want to carry her down and then have to carry her back up the stairs.  And she didn't appear to even be trying to "tell" me what she wanted.  And I didn't want to reward that kind of behavior.

Anyway, as you can probably see - there are only so many battles I can fight.

Back to our struggles during feedings... Allison (her therapist) said she is going to ask child psychology to sit in on our therapy sessions for a bit to see if she might have any ideas.  My main fear at this point is that we are making feeding a negative experience for her.   I can only imagine what it's like for her.  From her perspective, this is how I see it:

• She doesn't know or understand hunger - what it is or how to satisfy it.  
• She doesn't appear to be able to actually taste anything.  The only reaction we get from a food is in it's texture or thickness.  So there's no enjoyment there. 
• She has no interest or desire to eat or try what we are eating.  

So, to her - what's the point?  In this way, I am completely sympathetic.  I mean, how can I blame her?  Doesn't that just sound horrible?

And another thing... anytime you hear some "expert" talk about parenting, you hear "consistency is key."  Harlie has three nurses, two parents and several therapists that all have their own way in dealing with her.  We all have different expectations, demands and tolerances.  Consistency is not something Harlie gets to experience - and not for the lack of trying, either.

I am trying to believe that this is just a phase.  She's testing us and learning our/her limits.  If we can just persevere through this difficult phase, she will realize that it's less work to just eat the food without fighting so she can go do whatever she wants to do, sooner.  And if we could just teach her that communication will bring her power and control.  I think that would make such a big difference in her willingness and participation.  And maybe giving her more control in one area, will make her less likely to want it another area.

On a good note... we had open house for Murphy and Harlie's schools today.  Harlie will be in the same class she was in last year, with the same teacher (awesome Mrs. Katie) and the same students.  So, that will be good.

And she will get some good quality language development time with her hearing impaired teacher.  She will see her three times per week for an hour and a half in another classroom, before her class starts, for more direct instruction.  So, Monday, Tuesday and Wednesday she will go to school at 9:30am and will see her HI teacher until 11am, then she will go into class till 2pm.  On Thursday and Friday, her HI teacher will come into the classroom between 11am and 2pm for language development.  I'm hoping that her being in another classroom, with more direct instruction will really help her make some progress in communication.  We'll see...

Murphy seems pretty excited to start 1st grade.  His teacher seems nice and he has a few of his friends from Kindergarten in his class, so that's good.

I am feeling a little overwhelmed over what our schedule is going to be like beginning next week.  Once I have it all figured out (yeah, right) I will try to show you, so you know what I mean.

Okay, that's it for tonight.  It is late and tomorrow is another busy day.  Yay!

Thanks,
Christy