More stuff...

Yesterday afternoon I wanted to beat the storm that was headed our way and take the kids and the puppy to Petsmart (all by myself, thank you very much) so I could have them trim Rooney's nails.  I am sorry, but it just HAD to be done.  I have tried - we have tried and after I got his quick several attempts ago, I just can't do it!  And it kills me because he was so GOOD when I was doing it that first time.  UGH.  I ruined him!

Tom called right before I left the house and told me not to go.  But, I didn't listen.  I lied and told him, "okay" and promptly put the kids and the pup in the car.  I was sure that would bite me in the butt, but it didn't.  It was a good, quick trip and I only lost Cooper once, for two minutes.  I call that a success!

So, to give you an update to my last post about the baha - on Tuesday I got a call from the surgeon.  She started the conversation by apologizing.  And then she said that she had read my post!

Uh-oh.

I must say that this feels weird.  This blog is my one and only therapy.  I need to write about this crazy life.  It helps me think things over.  It helps me remember events and experiences more clearly (vital with a medically complex child).  And it helps me to make some difficult decisions.  And I need to write freely.  Without the worry of who is reading it and how they will interpret what I've written.  But, I never want to hurt anyone's feelings.  And I'm sure, no matter what the content, it must be really hard to read about yourself in that way.  I wrote my friend, Ann an e-mail to tell her about it and this is one thing she said in response that I will remember - "I hope you still blog from your heart - it's what makes you special... and pretty damn funny too!"  So, I will continue to write and pretend that no one is reading.  

I think it's fairly safe to say that it can be difficult to disagree with a doctor and argue your point.  And it's one thing to disagree in private - another thing to disagree face-to-face.  I don't think that comes naturally.  Well, at least not to me.  Heck, they are the ones with the education.

But, I am her Mom.  And there is no one in this entire world that cares more about Harlie than me and her Dad.  So, I'm probably going to spend a lot more time thinking about our situation, researching our options and asking anyone I know for more information.  After all, I only have one patient to worry about.  A doctor has more than they can often handle.  I know that because we often have to wait months to get an appointment with various docs.  But don't get me started...

But I do hope through this blog and my experience, that Children's National starts offering Oticon products, too.  I do appreciate that the surgeon called.  And apologized.  We canceled her surgery scheduled for June 18th.  Regardless, she needs to be well four weeks before surgery, and she's not well.

She also said that they ordered her an Oticon Ponto Power processor (it's more powerful than the Ponto) and that it was approved by Medicaid.  But, in thinking it through, I think I'm going to get stuck with a bill somewhere if we proceed with the Ponto Power one.  MCV did not bill Medicaid for her Ponto, which was purchased in February (I believe).  It wasn't until I received a bill that they realized they never billed Medicaid.  As soon as we spoke, they sent the bill.  But that was only a few weeks ago.

So, I think the reason why they approved the power one in DC is because they haven't paid for the one she currently owns yet.  And it is now too late for me to return it.

And in thinking it through even more, I guess it's probably best to wait on the whole thing.  By the time she gets well, I'll need to keep her well before the big surgery in August.  And I'm already putting her on a plane for pre-op torture in July. I'm afraid going through several days of pre-op stuff, surgery and then surgery again is just too much in a few month's time.

It's kinda "funny" to me how we have such a small window of opportunity for some items on her to-do list.  And once that window has closed, we have to move on to the next thing.  I will have to re-work it in at a later date.  :(

Speaking of her not being well...

She has been on her breathing treatment antibiotics (Tobramycin) for over three solid weeks now.  Granted, it's a 28-day course.  However, I would think with only six days left - she would have shown some improvement by now.  Nope.  Her nose is still running like crazy.  It's truly awful.  The skin around her nose has broken and bled several times now.  We've gone through boxes and boxes of tissues and we're back to having to carry around a burp cloth with us.  She's missed the last three weeks of school.  And I am SOOOOOO over this!!!  I just want her to be well and at school like other kids her age.

It's now summer.   Which means the pool (she LOVES going to the pool) and birthday parties.  Last weekend she was invited to a birthday party for her friends Jessica and Samantha (twins).  I took her because she loves them and their mom is Lynda (the one who organized the We heart Harlie event) and I knew that she would be okay with me bringing her.  She had a bounce house - and what kid doesn't love to play in a bounce house?  Well, her nose is running so much that I had to give her the burp cloth and she had to bounce around while holding it, constantly wiping her nose.  Luckily, she didn't mind.  I suppose it was worth it to her.  It was hot outside though, and she can't handle the constant heat.  I don't really understand it - but between the trach and her cardiac issues - she has a really hard time regulating her body temperature.  So, we had to go back and forth between outside and inside.  But the party was outside.  So, a lot of the time we were inside where she was playing by herself in their playroom.

It's times like those that I hate having to be so different and make special "rules" for her.  But I feel lucky that she doesn't feel that way yet.  At least I'm not forcing her to go inside while she cries to go outside and be like everyone else.

I have so much more to write, but I'm taking the kids to the pool.  Yes, we will carry around a burp cloth and wipes.  Harlie will float in the pool in her little star float to keep cool.  Although today is a beautiful day and just 70 degrees!  Perfect for her.

Tom is riding in the MS150 this weekend.  They cycle from Richmond to Williamsburg (75 miles) today, spend the night in Williamsburg and then cycle back tomorrow.  So, please wish him a safe ride. He got rid of his motorcycle and then started cycling.  Not exactly the safest sport around.

Tonight, I am going to a party to benefit for Down Syndrome (a fellow special needs mom in our group has a little girl with Downs and is having this party).  I am really looking forward to the night out (although I will miss Tom) and spending time with my friends with special kids.  There are times I feel truly lucky - and being around them is one of those times.

More soon!
Thanks,
Christy