The light at the end of a very long tunnel...

I thought this day would never come!  Never did we think that this distraction would be on for 5 months.  We thought we would be done distracting by mid-June and have the removal at the end of August, but in true Maddie fashion, she has proven to be different than the norm.  Because we distracted almost twice as long as the average patient we had to wait twice as long for the healing process.  I know I have complained about this being the longest summer ever, and really it has been, but I couldn't have asked for Maddie to have handled this situation any better than she has.  She is such a strong little girl and I guarantee she was much  braver given everything she has been through this summer than I could ever dream of being.  She has gone about her business, playing, laughing, dancing and being her all around goofy self as if nothing had changed.  The only difference is that she had to constantly hear Ian and I tell her 'be careful, don't run, no climbing, slow down, etc.' all summer long.  Let's just say we will be making our rounds to all the local parks over the next couple of weeks before it gets too cold...we've got a lot of missed playtime to make up for.  And as with any eagerly awaited event in life, the last stretch of the race is always the longest, which is exactly what we have been experiencing this past month.  I think we have all hit our breaking point and have been counting down the days until surgery.  I'd say the worse part has been Maddie's inability to get comfortable and sleep at night (which I can't blame her...how the hell would you sleep with bars sticking out your face).  So over the last month we have been playing a  'fun' nightly game we like to call 'Musical Beds'.  Maddie goes from her bed, to the floor, to our bed, to the couch, you name it, we've tried sleeping there!  Fingers crossed we can retire this game after tomorrow!

So here's the plan for tomorrow.  We will arrive at the hospital at 9am, and Maddie is scheduled for surgery to start at 10:00am.  They said the OR is booked for 3 1/2 hours, which seems like such a long time, but we are trying to take care of as many things while she is under anesthesia as we can.  The first part of surgery will consist of Dr. Buchman removing the distractors.  This in and of itself is a pretty simple process (or so he says) and should only take about 15 mins.  He will also be doing a frenulectomy, which is fancy talk for snipping the string thing underneath her tongue.  The speech therapist thinks this might give her more lingual movement and enable her to work on some of the speech sounds she is having trouble with.  At that point, the dental team will take over, and this is where we cross our fingers and hope they can address some of the dental issues we have been having.  As I have mentioned before she has a limited mouth opening which makes it very hard for us to brush her teeth.  The dentist is hoping that he will be able to get a better look at her teeth, get some good x-rays, do a good cleaning, and if possible either pull some of the teeth with cavities or get in to fill them.  They won't know the game plan until they get a good look and see how much of an opening they have to work with.  Worse case scenario, they tell us they weren't able to do anything.  And that brings us to the final event to take care of while she is under and that is getting a CT Scan of her jaw for the oral surgeon.  He needs to get a good look at her jaw bone and see why her mouth does not open very wide.  He thinks she has a fused jaw bone which is limiting her mobility but wants to make sure.  After all of that is done she will be taken to recovery for probably 1-2 hours.  They say we can go back as soon as she is awake, which I hope doesn't take too long. 

So far she seems in pretty good spirits and is excited about getting her bars out.  We told her that the trach will not be coming out yet and she seems to understand and is okay with it.  She did ask Ian tonight at bedtime if they were going to put a feeding tube in her nose, and earlier this week she was questioning me to make sure we would be there the whole time.  So while I say she is doing okay, it does sadden me to know that she is probably more aware of what is going than I think she is...

Say GOODBYE to the bars!!!

Maddie doing her 'Happy Dance' because her bars are coming off tomorrow!