I keep falling behind in posting...

Late in January, Ethan got one of his 4-6 year immunizations and had a bit of a reaction to it again.  This is the second time he's had a reaction to an immunization but it wasn't as bad as the one from his flu shot.  He also saw his neurosurgeon for a follow up appointment and we discussed his December MRI.  His imaging is a bit of a mystery (as it always has been).  The space where his Dandy-Walker Cyst is is still quite large but it is not clear whether or not it is filled with fluid.  Since he is not showing any symptoms we're going to continue to monitor him especially since his back is more of an issue right now.  Ideally once things are underway with his scoliosis repair, the neurosurgeon would like to see him orally feeding.  Apparently it is a good way see how the cyst is affecting him...but it would be hard to tell if his swallow issues are because he hasn't orally fed since November 2010 or if it is a neurological issue.  Kind of a catch 22...

On the plus side, Ethan's neurosurgeon has agreed to be available for Ethan's tentative surgery date on March 26th should the orthopaedic surgeon be willing to have an extra person in the OR.  We need to find out where the VEPTR will be placed to be sure it avoids the shunt area.

We also saw his cardiologist last month and we won't have to return for 2 years now.  His ASD has corrected but his left pulmonary artery is still constricted.  It does not seem to be causing his heart any undue stress so we can just monitor it for now.

Recently Ethan was working with a communication iPad for about 4 weeks and he did pretty well.  He mastered the phrases, "I want to watch cartoons" and "I need help".  With a bit of help he was able to 'say' "I want to play with my iPad".  It was pretty neat to see the progression.  Since it was just a loaner, we were only able to use it for the 4 weeks.  They had a team meeting and decided that they support the idea of proceeding with another iPad for communication purposes.  We are now awaiting its arrival.  An interesting development recently is that he is pitching full out temper tantrums when things don't go his way.  I think a lot of it is age appropriate behaviour, but also think that he is feeling frustrated.

Ethan also tested a new standing frame recently.  It is the third one we've trialed.  It has been a long time since we've had a standing frame in the house and he did really well with it and seemed to enjoy it.  I think he likes the different vantage point.  Surprisingly we were able to trial it for longer than was initially anticipated which was great but now we are without again.  It is the one national product we tried and it has been our favourite.  We need to wait for everything to come through on his walker before we can submit a request for funding assistance with the standing frame.  While it was here, we had him in it 2-3 times a day as time permitted.

His respirology appointment went well, they said his lungs sounded really great and that he appears to be doing really well.  She thinks that the VEPTR surgery would be of benefit for Ethan.

He had his second hair cut and it went pretty well (although there were more people at the salon than we would have liked).  Lorelei joined us and wanted to be part of the photos.  He looks so cute with his new haircut (large one below)!

Also big news...my baby boy turned 5 last month!  Can you believe it?!  We were not able to celebrate with him on his birthday as he was in therapy.  We did pick him up early from therapy but that was because he started to show symptoms of being sick with a cold.  We celebrated with an ice cream cake and let him try a taste of whipped cream (top centre picture below)...I think most of it came back out of his mouth as he didn't quite seem to know what to do with it (or didn't like the taste/sensation).  He did enjoy opening his presents and has likes playing with his new toys.

 

With his upcoming surgery, we felt it was better to move Ethan from his crib to the larger bed that Lorelei was using in a previous post (she is now using a twin bed which friends have loaned us).  With spinal correction, there is a high likelihood that he will grow an additional 2-4 inches so we thought that it was better to have him used to the larger bed before he comes home from surgery.  I think he likes the extra space...but our bedroom is now even more cramped with his bed in there - we sure hope we have success in finding a new home soon...

 

 

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!

 

Trying Our Luck on Facebook

As some of you are well aware, we are not on Facebook (I know how shocking there are still people out there that don't have FB accounts).  Mom is on FB however, and has posted Ethan's information in an attempt to win a specialized bed for him.  The winner will be chosen by the highest number of votes (kind of like a popularity contest)...none the less, we are currently in 3rd place with 832 votes.  You can vote daily and there are only 28 days left to vote.  We are thrilled with the response mom has gotten thus far and I thought I would try to help things out by posting the link here. 

www.facebook.com/BedsbyGeorge/app_192229990808929 

If you haven't already done so, and are willing to participate (I understand first you have to like the company and then you get the option of voting - but think that is just the first time...after that you can just vote daily) please drop in to vote for Ethan.  You may notice there are two Ethan's vying for a bed...ours has the following picture of Ethan attached. 

He has pretty much outgrown his crib (and the hospital ones as was pointed out several times during his brief stay) and this would be a great option for him at home.

Lucky Number 13...

Waiting for surgery.

Thankfully, although his surgery was cancelled in November, Ethan was able to get a time on December 4th.  When we went in to surgery, his hydrocele was not really noticeable but the surgeon decided to proceed anyway.  Surgery went well and in recovery she told us she was happy she chose to proceed with surgery and that it wasn't acting up as the anatomy of the hydrocele was different.  During his time in recovery, Ethan had a dip in his oxygen saturation numbers and was not able to keep a steady pattern they were happy with so he got admitted for the night.  For the first time they put us in a semi-private room.  When Ethan was a month old, they moved him from a ward room to a private one as he had the EVDs and chemotherapy.  We were quite nervous about what he might pick up as the floor was full and most of the doors seemed to have the precaution signs on them indicating there is a lot of germs going around!  We saw several nurses we got to know in our 2010-2011 stays and everyone was amazed at how much he's grown since they last saw him.

Ethan behaved during the night (although because they ordered the monitor on him and he tends to breathe shallow his alarm rang off a lot as apnic), and was able to come home Wednesday morning.  :)  Although the site is swollen, he was in pretty good spirits.  We are continuing to give him Tempra to ease the pain as you can see he is quite sensitive too.  Because of the location of his incision, we are not putting him in pants much and are not to use the back brace for 4-5 days so it can heal.  Last night and today Ethan had a rough go of it not sleeping, coughing lots, throwing up and generally in pain.  Hopefully he has a good night tonight!

I believe I've mentioned it before but at our local hospital, you can take part in a program that allows you to enter the OR while they anaesthetise your child for surgery.  I have been going in with Ethan since we started his serial casting.  In order to go into the OR, you need to put on scrubs, shoe covers, mask and hair net.  Clayton usually mocks me when I'm all dressed up and this time he grabbed a couple pictures (as you can see, I successfully blocked one of them).

Catching up

In October we also saw Ethan's orthopaedic surgeon and he is happy to keep Ethan in the back brace and revisit his spinal images in January to see if we need to move towards surgery.  Each time we wait, that allows Ethan to grow a bit older, bigger and stronger and reduces the minimum amounts of surgery he will require until fusion.  The surgeon said that in a year and a half, Ethan's back has only progressed a few degrees so although it is a severe scoliosis, it isn't changing rapidly right now.

In November we followed up with the general surgeon about Ethan's hydrocele.  It had reduced leading into November but started to act up again just before the appointment, which was nice as it allowed her to see what was going on.  She said that since Ethan is shunted, there will always be extra fluid and that his hydrocele likely will never self correct.  She planned for surgery on November 20th.  I then brought him to where he goes for therapy and he came home with a cold.  :(  It lasted about 3 weeks and meant he did not have surgery on the 20th. 

He also saw his neurologist last month who was quite pleased with his progress.  I had brought along the iPad in case Ethan got bored of back to back appointments and he was having a grand time with it, doing what he does and impressing everyone with his ability to work the iPad.

Lorelei too had an exciting day in November...she became a Brownie!

For anyone who remembers...she is wearing a vintage uniform (circa 1982).  She is not the only girl wearing a vintage uniform there is another girl also wearing one from her mom's youth.  The blue sash is so that she can collect her own badges as removing them from the dress would likely leave lots of holes and it might not hold up so well.  She seems to be enjoying it.  Just last week we toured a local fire station and they got to see a truck leave on a call (and come back to finish the tour).

This is Halloween, This is Halloween...

The night before Halloween, we sat down to carve our pumpkin.  Lorelei chose the stencil this year and helped de-gut the pumpkin and pick out seeds.  We took a bit of time for sensory play for Ethan and he didn't seem to mind it very much.

The photos are not great quality but Ethan was playing with the pumpkin guts with us and ended his session with...of course, dumping the bowl out (last 3 pictures).  I baked the pumpkin seeds again this year and they were pretty yummy!

Halloween worked out pretty well this year.  I got into the spirit again for the kids and painted my face before heading to work.  I had bought a blue wig on discount and figured I could use it for a specific costume, but saw an image online that I thought was pretty neat and I tried to copy it instead. 

I'm not sure if you can make it out, but it is a fish drawn on one side of my face (with our lips shared), kelp down my neck and bubbles on the other side.

Once we got home from school I got Lorelei's make-up done and she had to wait to go out because Clayton was working so she helped hand out treats.  Lorelei went as a vampire this year.

We were able to get Ethan into a costume just for photos without him protesting.  Which was surprising since he was too big for the costume and the last couple times he wasn't so into it.

Then to end the night, we went outside to grab pictures of the three of us dressed up. 

Surprisingly, Clayton hasn't been much into dressing up for Halloween...I thought it would totally be something up his alley.  I guess we needed someone to take pictures for us.  But while we were waiting for Trick-or-Treaters to come by, he was a good sport and let me try my wig on him.

Lorelei's pumpkin from school and Clayton's masterpiece.