Quick Update

On Monday, Terri came in and I was still in bed.  She started her assessment of Harlie (who was also still in bed) and then she poked her head in my door.  She said, "Harlie is on four liters of oxygen - and she's only at 85%?"  I said, "Yes."  Four liters of oxygen is a lot.  She looked concerned.  And then she left.  A few minutes later she came back and said that her trach had some bloody secretions.  And that she thought maybe she should go to the doctor.

But, I was in no condition to take her to the doctor.  Or the ER, which is where I knew she'd end up.  Well, right at that time my friend Jennifer called.  And I told her what was going on.  And wouldn't you know that she offered to come over here and drive Terri and Harlie to the doc and ER for me, so I could stay here and rest?  Wow!  So, my Mom came over to hang out with Cooper downstairs.  And Jennifer and Terri took Harlie and I stayed upstairs and slept.  Crazy, huh?  And I crossed my fingers that there would be no reason to admit Harlie to the hospital.

They got back later on that afternoon, with Harlie, luckily.  Terri said that Harlie was a mess until they got to the ER.  She said that once they were there Harlie got herself together and smiled at everyone while playing on the iPad, looking all innocent like nothing was wrong.  I guess she realized where she was going to stay if she wasn't on her best behavior.  She didn't cough up any blood or anything.  She said the doctors were like, "So, what brings you here today?"  I had to laugh.  She has totally done that to me before.

Her x-rays were good (which is so bizarre considering her sats are so low!).  And they tested her for the flu and her test came back positive for Influenza B.  No surprise there.  See? I told you we all had the flu.  But, she's been on Tamiflu since Friday.  So, at this point, there's nothing we can do but treat her symptoms.

Today is Friday and I am definitely feeling better.  And I can't tell you how good it feels to be back in the land of the living again!  I might even try to run a little this weekend. I'm not back to 100%, but I'm getting there!

Harlie is still on four liters of oxygen.  And her sats still go to the mid 70s when she's off the oxygen.  But, she seems happy.  Of course she's pretty much confined to the couch since we've been leaving her on trach collar (humdified air with oxygen) to help keep the oxygen from causing more mucus plugging.

I have to tell you that I am really over her not being well.  She has been sick all but three weeks since Christmas.  And I miss a healthy Harlie.  It's been so long since she's been energetic and playful.  And I'm sure she misses being healthy, too.  With any luck, she will recover from this flu and this will be IT.  I just had to reschedule that darn sleep study.  Again.

On a good note, she is doing great with her BAHA.  I'll have to take a picture for you so you can see it.  But, now the processor just clicks right on her head.  It's so cool.  She's still sensitive and fights putting it on for a while.  I usually have to withhold something she wants (like the TV or iPad) until she lets me put it on.  It only takes a second, but you do have to press a little hard, so maybe it still hurts a little.

Anyway, while wearing it, for the first time EVER she actually asked me to turn the volume down on the TV!  Can you believe that?  And then while using her communication device, she turned the speaker volume down.  I'd say that's a pretty good sign that she's hearing better with it actually being bone anchored now.  Woohoo!  Now if only we could get her back to school so we could see it in action.

On Thursday night, Paige (Paige Stevens Photography) came over and did a quick little photo shoot with Harlie.  This was our third appointment - every other time Harlie was too sick.  We took Harlie off the oxygen for the photos - and just let her hang out in the 70s.  You wouldn't even know it, either.

Harlie was so good!  She was completely cooperative in every way!  I just couldn't believe it.  She is really growing up.  She no longer squnches her face all up when she smiles.  Wow.  What a difference that makes!

Paige is so good, too.  I really can't wait to see these photos.  We did it to get a photo of Harlie for the new flyer for the 2nd Annual We Heart Harlie fundraiser.  Lynda is already busy making big plans.  So, save the date!

We Heart Harlie

May 18th, 8am to 11am

at Glen Allen Elementary School

And this year there will be a 5k, too!  

There will be the raffle like last year.  So, if you have a service or product you would like to donate, just let me know!  We are working on getting some cool printed t-shirts, too.  I know a lot of people wanted to order shirts, but we just couldn't keep up with the demand.  So, this time, we'll have them on hand.  More on all that as things develop...

Tomorrow (Saturday) is Cooper's first soccer game.  I have to admit that I'm a little worried.  The other day Cooper and Murphy were kicking the soccer ball in the backyard and when Murphy kicked the ball, Cooper started crying.  Oh boy.  Does that mean he's going to spend the whole game crying?  Guess I should prepare myself to be pretty embarrassed.

That's it for now.  More later!

Much love,
Christy xo