A New Year and a New Plan

Have you ever watched those shows where they kind of flash forward, to the past and back?  Well, I thought I'd try to write that kind of post this time.

Early in January we met with Ethan's GI doctor who after feeling his abdomen suggested there might be some stool blocking his system and ordered a set of x-rays.  Since Ethan has been x-rayed and CTed so much that I'm quite surprised he doesn't glow in the dark, I requested (and he agreed) to combine x-rays with those for his orthopaedic surgery follow up later in the week.

When we went for Ethan's x-rays, I had explained to the technician that we were hoping to reduce some of his exposure.  She said that since a spinal x-ray is a tight picture of the spine we would not be able to reduce the amount of x-rays but at least it was just one trip. 

After the first x-ray she came back to redo it.  She said something like, "I need to retake that x-ray since I did not capture his cure in the image.  I knew he had a curve, but did not think it was quite that much of a curve."  I had a duh moment where I thought I should have told her that when she said it had to be a tight spinal x-ray.  I knew his scoliosis was quite pronounced (heck, I've been with him for every one of his x-rays).  So I joked about having been right that we could have limited imaging.  I also (in a straight face) said to her, "So...what you're telling me is that we're going into surgery?!?"  She was a bit flustered and said, "I'm not saying anything..."  And I cracked to let her know, we knew the curve was bad and we know we have to go for surgery, we just don't know when.  With their PCs down that day, I figured a little ribbing might lighten their Friday.

As you can imagine all kinds of thoughts were whirling through my head over the weekend.  On Saturday night, I had a dream and in this dream I so vividly (through two different x-rays) saw the poop in Ethan's GI track.  One x-ray showed it from the front (roughly 2 inches long) and about an inch thick from the side view.  My mom suggested, if I'm dreaming about it then he must not have a blockage.

The end of the weekend, we received an email from Ethan's GI doctor...it was his spine that he was feeling.  "It is incredible the degree of scoliosis," which he didn't appreciate before.  Ethan doesn't have any stooling issues and we're to keep things up as we have.  A bit of good news at least.

We had our follow up appointment with the orthopaedic surgeon the same day we did the x-rays and he is quite thrilled with how well Ethan looks overall and that he has been pretty healthy over the past year (we've been getting a lot of these positive comments lately).  He also feels that Ethan has gained nicely and should have enough padding for when we start with his next round of surgeries in March.

That's right, I've beat around the bush enough and come to the point.  The surgeon has decided it is time to start with Ethan's scoliosis repair.  We're still planning to move ahead with the VEPTR and the March date hopefully allows for a few things: 1) them to secure the equipment required, 2) it is later in the season so should hopefully not be a very risky time for Ethan to be in hospital, and 3) for Ethan to be healthy enough to proceed.  The surgery takes up to 6 hours and will require about a week long stay in hospital to start recovery.  It takes a couple months to fully recover and then he is monitored frequently as due to growth they have to expand the VEPTR or risk breaking his ribs/getting over correction causing the scoliosis to curve the other way.  Typically they are revised every 4-6 months and fusion surgery often doesn't occur until earliest 10 years of age...which will mean a minimum of 10 surgeries once we start.

I must say I wasn't surprised to hear that we're at the stage to start with surgical intervention.  We've been trying to put it off in non-surgical ways but are only able to maintain him a bit.  And if you factor in the above comments, it just illustrates how bad his scoliosis has gotten.  BUT...I'm nervous!  Before heading back home, mom asked me not to research the surgery or stress too much.  I can't promise either but am trying to at least hold off on some of the worrying.

Rounding out 2012

Wow!  I started this original post when there was just 9 days left until Christmas Eve...and now we're into the New Year!  It is crazy how fast 2012 flew by!  We weren't even close to ready for the holidays when I first started the post but we did get everything done in the end that we hoped to...or I've forgotten what it was I wanted to do if we didn't.  ;)

The kid's cousins on Clayton's side and their family have recently moved closer to us and we have had the opportunity for some really lovely visits together.  Lorelei is delighted to have her cousins come visit her and to share/show them her stuff.  (She doesn't often get to have friends over to play so she crams in all the playing she can with her cousins while they're here.)  I think Ethan enjoys their visits as well. 

This winter we did do something we haven't done before, and Ethan got to join us...

We went to the local Santa Claus parade!  We bundled up the kids, grabbed coffee & hot chocolate and headed out.  I think overall it was a pretty good outing...but it was bitter cold!

Ethan, Kalianna, Auntie Pengo, Mariella, Clayton & Lorelei watching the parade.

All bundled up, Ethan tolerated most of it, but by the end he was really cold and it took a bit for his hands to warm up again.  Thankfully his Aunt is better prepared and let us borrow some leg warmers to keep Ethan's footwear on.  Mental note: Next time bundle up better and remember mitts and hats for everyone.

Ethan's incision site has healed well and looks great!  He now has matching incisions (which was planned, I asked the surgeon ;)).  The only other medical thing for Ethan last month was his MRI...and we'll know more about the results later this month.

This year we decorated earlier than we have in the past couple years and Lorelei took the lead role on decorating the tree.  She did a great job and only needed a bit of coaching to make sure decorations were all over the tree and not clumped together.

Ethan watched from his play spot on the floor, even reaching out for decorations as they were being put up and from the tree at later times.

 

Ethan lost another tooth (or two?) mid-December, it has been a while since he lost a tooth but I was quite thankful that it wasn't one of his adult teeth.  We were lucky enough to capture it to be sent for analysis.  I do not anticipate it being different than all the other ones we've sent.

 

 

The rest of the month we pretty much got ready for the holidays and everyone but Ethan worked at recovering from a cold.  Ethan spent some time chill-ax-ing and watching TV in an easy chair.  (His right eye is patched to make him work his left eye and retain vision in that eye.)

 

Recently we'd picked up a larger bed that Lorelei has been using, and for the first time in about a year or so we put Ethan in with her for a little visit.  She loves it when he comes to her bed and this was no exception. 

 

 

Ethan did a great job opening presents this year.  We got through all of them in one day and he unwrapped (or at least partially unwrapped) all of them.  He ended up with a lot of fun toys.  The following picture is him opening up a really neat musical toy that I'm sure he'll love once he fully explores it.

 

 

One gift for Ethan was a big disappointment.   We'd picked up an expensive, geared to children, stylus for use with the iPad but it did not light up the choices/information so is useless for him. In an interesting turn of events I found a stylus for $2 that works perfectly for him. It is a bit slimmer in build but he was using it and choosing it for hand-over-hand connect the dots numbers.  :)

 

Kalianna, Mariella and their parents came for another visit over the holidays and the kids had a great time playing together.  We took them out one day to an indoor play space.

  

 

Auntie Pengo & daddy also got in on the action.

 

 

Then we took them sliding to wear out any energy that might be left...but I think the parents were more tired than the kids in the end.

 

 

While on the hill, Lorelei and daddy even got some airtime.

 

 

It was a great outing although quite chilly for the photographer - nothing a round of hot chocolates didn't fix.  Lorelei was quite thrilled to have so much company over the holidays!