What I've been working on lately...

Preparations for our Boston trip

Mostly for the pre-op one in July.  Our schedule has been finalized and there is a lot packed into two days.  We will fly up Monday night (July 22) and have appointments all day Tuesday and Wednesday, and then fly home Thursday morning.  Unfortunately Tom cannot go with us.  And while I know how important it is for him to provide for our family (since I'm not going to do it!) it doesn't make it any easier when we have to go through something like this.  I can't help but feel sad that we have grown so accustomed to major medical ... stuff, that this is becoming practically "routine."

I try very hard to not compare our life to others.  But it is a daily struggle.  I know that most couples would do this kind of thing together.  Which we would, too, if it were a single instance.  Or maybe one of several.  But after years and years of major surgeries and hospitalizations... it's just not possible.  Sometimes it's hard for me to look back on all we've been through.  It just seems so unreal.  And sometimes it's hard to for me to look to the future.  When are we going to finish with her to-do list for crying out loud?!?!  Instead of taking time off for surgeries, I want him to be able to take time off for vacation.

Okay, enough whining... one of the docs we are going to see is a plastic surgeon who is going to fix her left eye.  I use the term "fix" loosely since I'm not even sure it can be fixed.  Maybe improved would be a better word.  Guess I'll find out in July.

When Harlie was first born, her eye was pretty disturbing and I wanted it fixed yesterday!  And very shortly after bringing her home I took her to an eye doc.  But they told me it was best to wait till she was five years old or later.  Ugh.  That was a hard pill to swallow.  Back then she couldn't close her eye much at all and we had to keep ointment in it to protect it and keep it from drying out.  Yuck!  But, over time, she's gotten stronger and now she can keep it closed enough that we haven't had to put any ointment in her eye in years.

Anyway, her doc told me that she would have to remove the dermoid cyst on her eye and an oculoplastic surgeon would have to work on the skin around the eye.  I've heard mixed things about removing the dermoid cyst.  Some say leave it alone and let it be, some say shave it off, close the eye up, and hope it doesn't grow back.  I would have attached links for you, but I didn't get much when I googled it.  Just a bunch of yucky pictures, which I didn't think you'd want to see.  You're welcome.

But, we are only seeing a plastic surgeon.  No doc to get rid of the dermoid.  So, I had to make an appointment to see her doc here, so I can get her opinion/info, so that when I go up there I have some idea of what I'm talking about.  Of course, she's booked several months out.  I think they had a September date for me.  Um, no thanks.  I left a message for her nurse explaining the situation and she called me back that day and got me a June date.  Awesome!

I wrote the above a few days ago.  But, I couldn't finish it, so I didn't post it.  And now, the schedule has been changed a bit.  Instead of going up Monday night with our first appointment Tuesday morning, we will have to go up Monday morning for an appointment that afternoon with one of her docs.

I also heard from someone from the dentist office there.  She told me that a month after the surgery, we will have to return for them to place an "appliance" in her mouth.  Then she will have to be seen one month after that.  And then three months after that.  And then every six months after that.

I said, "What kind of appliance is this and how long will it stay in there?!"  She didn't know.  So, I guess I'll find out in July.  I am picturing some sort of permanent retainer?

Nursing

As of right now, I don't have a nurse to take Harlie to summer school.  Terri, who has been with us since October/November is in school and her class schedule conflicts with Harlie's.  This really sucks because I do NOT want to have to find a new nurse.  We are now comfortable with Terri, and I believe that she is comfortable with us.  And I just don't want to have to expose Harlie or the boys to another stranger.  I can't possibly tell you all the strangers that have entered my house since Harlie's birth.  And the other day I was taking Cooper somewhere and leaving Terri and Harlie behind when Cooper said, "I love you Ms. Terri."  It kills me that I have to bring home another new person for them to get to know.  It also kills me that I spoke to a nurse about coming out to do a "meet and greet" several times.  And then she no-shows me.  That was Monday, and I haven't heard from her, or the nursing agency since.

Allergist

Harlie has been junky and sick since about the same time we got Rooney (the last day of March).  I've asked her pediatrician and her pulmonologist about this.  But both say it is not allergies.  I want to believe them.  I do!  But, I have been having a nagging feeling that maybe allergies doesn't present itself in the same manner in her as they do in most kids her age.  So, given that this upper "cold" just won't go away, what if she is allergic to dogs?  I would die.  Seriously.  Can you imagine?!?! I just need to know for sure so I no longer worry about it.

So, I made an appointment for her to see an allergist next Thursday.

So next week, which is the last week of school, she has three doctor's appointments:
Tuesday, her local cardiologist (I will have to pick her up from her field trip in order to get her there on time)
Wednesday, her orthopedic surgeon in DC (an all day affair)
and Thursday, the allergist.

I've also made an appointment to see her local ENT.  That was made with this ongoing sickness in mind.  So, in the next three weeks, she has five doctor's appointments.  And that's just as of right now.

Logisticare

Apparently Medicaid will reimburse me for driving Harlie to her doctor's appointments.  I can't believe I didn't get this set up five and a half years ago.  Do you know how many miles I've logged traveling to her doctor's appointments?!?!  The reasoning is that it is in our Medicaid waiver that I can call Logisticare and set up for them to come to my house and drive us to her appointments.  It is clearly cheaper to offer reimbursement and let the parents take their own child(ren) then to have a driver come to get us for every single appointment.  Of course, I was on the phone with them about five times and I spent well over an hour trying to get that done.  You have to schedule a pick-up for each appointment and provide tons of info (where you're going, when to pick up, who she's seeing and at what time, etc.)

It's now days later and I got a message that said something was wrong with something and I have to review all my scheduled trips.  Ugh.  So, now I'll have to go back to spending some major time on that project.

Okay, there's more, but I am too tired to keep writing.  So, I'll have to continue later. Thanks for reading!

xoxo,
~Christy