Friday, July 20, 2012

Leaving for Boston soon

I had such high hopes of getting you all caught up this week.  I even started to write a few - but even since then some things have already changed.

This post is just to tell you that we leave for Boston tomorrow!  I can't believe pre-ops are already here!  And that means that surgery is just over one month away!  Crazy!  To think I started this process almost one year ago!  Whew!

My friend Heather and her daughter Mallory, are flying up with us tomorrow.  We will have an abbreviated little "girl's weekend" which should be fun.  They will leave on Monday.  And later Monday afternoon Harlie will have her first appointment with a couple of the plastic surgeons at Boston Children's Hospital.

Then Tuesday morning, my niece, Maggie, will fly up to help me with Harlie.  She is supposed to arrive around 8am and our first appointment is at 10am.  So, my fingers are crossed that everything works so she can make it before then.  The thought of having to talk to all these doctors and go through all the tests and stuff all by myself with Harlie was very overwhelming.  It is so hard to try to focus on what they are telling me when I have to also keep her entertained - especially when she has to go potty.  So, Maggie will be a huge help!

Tuesday and Wednesday are going to be long days, full of appointments.  Then we fly back home on Thursday.

I sat down to think/write down Harlie's packing list yesterday.  Man, I have to take a lot of crap with us.  I wish I had thought about it sooner - but we so should have shipped her formula to the hotel.  I have to carry a case (24 cans) of formula with me.  Ugh!  At least I won't be carrying it back.

Tom told Harlie that she gets to ride on a plane again.  She immediately pointed to the stuffed fish she got during our last trip there.  And now she keeps signing "plane."  I'm thankful she finds that fun.  For now.  We'll see how she feels about it after she has to have dental molds done.  I think I'm more worried about that process than anything else right now.  I don't know how in the world they are going to get them done with the way her mouth opens and her inexperience with food in her mouth.  I really don't see how she's going to tolerate that.  And I'm fearful of emotional scarring.  For me, not her.  Just kidding.  It's just that we've tried so hard for years to make anything associated with oral feeding as positive of an experience as possible.  And this will be far from positive.  I'm assuming, anyway.

Changing subjects for a second... Tom's sister, Kristie, and her two kids, Nathan and Tayne, stopped in Richmond for a quick hello while on their way to the beach for vacation.

It was great to see them, if only for a few minutes.  Have fun guys!

Okay, must run.  I have to get up early in the am to go to Adrenaline (must work that stress out while I can!).  Then it's time to pack, then leave.  Oddly, I'm excited.  I just want all of this behind us.  It feels like we've been going up the first hill of a roller coaster forever!  Even though it's not going to be done after this trip - at least it feels like progress.



Christy said...

Good luck!! Hope this trip goes as smoothly as possible. Think about you all often.. Positive thoughts and prayers your way.

Kristen said...

Thinking of you. Fingers crossed all goes well!

Sarah said...

Good luck. :)

Susan said...

Guess I'm backtracking and missed this post....I think it's just such a relief to be getting on with it. That's how I usually feel: a weird excited but in a sickly kind of way, feeling.