Friday, February 21, 2014

Ditto Olympics in Sochi

My boys have ALWAYS been passionate about the Olympics.  The favorite event has always been the bobsled though this year speed skating would be the runner-up.
 Coop has been begging me to get some McDonald's chicken nuggets so he and Nate could reenact the biting on the metal and the nugget.
 Coop is just an incredible artist!  All his school pictures the past two weeks have had something to do with the Olympics.
 3-man bobsled by Coopy
 The sun peaked out long enough to get a mean game of "ice" hockey in the front driveway.
 We ran out of hockey sticks so the goalie had to resort to the racket ball racket.
 Check out my Lovers calves!!!
Cool panorama shot of the hockey game.


Tuesday, February 18, 2014

Update On The Ol' Ear Experiemental Surgery

So...we've all been anxious to know if Alex's $17,000+ surgery was worth its' weight in pennies.  We don't have a definite answer yet but after a couple of follow-up visits with Dr. Black we have found that the stent is starting to fall apart. 
 We could tell we were in a bit of trouble when we saw this "sea creature" aka. the stent start to come out of his ear.  We went back to see Dr. Black and he ended up cleaning up the area.  Some pieces of the stent started coming out showing that the stent is falling apart a bit.

Dr. Black suspects that the stent has lost about 80% of its' spring.  Being as this stent was totally experimental and as far as we know this is the first time it has been used in this capacity we are all in unknown territory.    The good news is that the skin graft is taking and looks healthy.  The ear drum also looks healthy -- a tint of a red hue but that is probably due to the surgery trauma but also might be showing the early signs of infection.  Alex is treating this with some ear drops.

We'll go back in a few weeks for another exam and also to do a hearing test.  Alex does feel that his hearing has improved out of this man made incredible body part.

Friday, February 14, 2014

Valentine's Day Lovin'

A whole lot of lovin' floating around at the Ditto's on Valentine's Day!

 We dined on homemade pesto stuffed chicken cordon bleu, rolls, baked rice, mandarin orange green salad, and red heart jello.
Alex made some super tasty mini cheesecakes for dessert.


Thursday, February 13, 2014

Winter Wonderland

The kids have been waiting and waiting for a good snow fall this year.  Oddly, the most snow we have had has been about a half an inch.  This past Saturday night it started to snow and by Sunday morning we had over a foot of snow.  Several of the kids were outside sledding at 6 am -- I'm sure our neighbors love us!

Due to safety issues and the time needed to clear roads and driveways church was cancelled for the day.  I love going to church but I have to be honest and say how magical it was spending the day at home with my family.

Tyler, Alex, and Birch hit the snow shovels by 7 am and by 8 am they were headed to the church building to meet a group to shovel.  They didn't come home until just before noon as they ended up going around and helping many other families clear their driveways. 

The afternoon was spent sledding, baking, having a family church service, and watching "17 Miracles."

 Tyler catching some air.
 Snow Angels - Chloe and Alysee
 Alysee and Chloe

 Alex spend some time building a jump with Tyler.
While the kids and Birch were outside I finally made a recipe I'd been saving for a few weeks - Braided Nutella Snowflake.  It was DELICIOUS!!!
 We had a great family church with each of us sharing a favorite scripture and then ending with talking about the story of David and Goliath.  The kids all got a turn to use the marshmallow shooters I recently made to "kill" Goliath (aka Daddy).
After Nate successfully hit Birch with a rock hard marshmallow Birch decided he better add some protection (goggles, scarf, and loin protection).
Alysee taking a turn being David.

The snow is all melting and we are in a large mud puddle now.  Personally, I'm looking forward to some sunny warm weather up ahead.  My favorite part of Sunday was just being together!!!  Simple Pleasures!

Wednesday, February 5, 2014 you hear what I hear?

Alex recently underwent his sixteenth time of being put under.  Through talking with several people I have realized that many do not even know of the evolution of Alex's ear.  I thought it might be fun to take a moment to reflect on God's creation, Man's creation, and all the in between.

Alex was born with microtia of his right ear.  Basically it is a congenital ear deformity that happens in about 1 in 8,000-10,000 births.  It was a pure surprise for Birch and I (and the doctor).  At first we didn't know if Alex was deaf or if we had done something wrong during his pregnancy that had caused this deformity.  It took about five years of getting educated and several visits to the children's hospitals to find out that Alex could hear perfectly normal out of his left ear and that we had options of external and internal ear reconstructive surgeries or we could do the prosthetic route.  We were not pleased with the visual outcome of the external ear surgeries when we visited Seattle Children's hospital.  Birch and I had pretty much decided that we would go the prosthetic route and had had a phone call with the prosthesis setting up plans for these to happen.

In 2004, we traveled to Salt Lake City for my brother's wedding.  At the reception a couple approached us and said that their grandson had just undergone external and internal reconstructive surgery for microtia.  They raved at the good work of the doctor and how good the ear looked.  After getting in contact with this family we totally changed plans and booked a flight to meet Doctor Grant Fairbanks, Sr. in Salt Lake City.  Alex underwent several surgeries to actually sculpt his ear out of one of his ribs, several skin grafts, and a lot of artistic and medical talent.

Fast forward ten years and lots of surgeries Alex has a darn looking good ear and the capabilities of hearing.  All of his external ear surgeries were done at Primary Children's in SLC and his initial internal ear surgery drilling his ear canal and creating his inner ear parts were performed at Seattle Children's hospital by Dr. Sie.  Ever since the initial internal ear surgery Alex has required almost yearly maintenance surgeries by our wonderful local ENT, Dr. Ryan Black, to re-drill his ear canal and deal with the chronic infections and steno-sis.

Early January 2014 Alex was scheduled for a regular maintenance surgery with Dr. Black to re-drill his ear canal and help with his chronic ear infections, scarring, etc...

Alex and I have discussed many times how we wish that we could invent something new (like a titanium stent) as this is a chronic issue for Alex.  As our doctor (who is a Bishop in a neighboring ward) came in the room for the pre-op appointment Alex briefly shared this desire and a totally visual "light bulb" moment happened to Dr. Black.  He instantly had an idea of a newer product called Propel, a Steroid-Releasing Implant, that was just approved by the FDA for sinuses.

As we watched the preview video we all felt as though we could interchange all the sinus words with "ear canal."  Dr. Black called the hospital as he had just recently ordered the stents and they were not in quite yet. 

We decided to postpone the surgery and then reschedule after the stents arrive.  The stent puts pressure on the newly re-drilled ear canal to help hold it open while it is healing and then releases steroids over a 30 period and eventually the mesh stent dissolves.

How Propel works:

We've been pretty excited and figure it can't hurt to try something different as we know the end result of Alex's maintenance surgeries will be the same as the past five or so. Hopefully our insurance company will agree with us and help cover the stent as it is a spendy little thing. We feel Dr. Black received inspiration for Alex and we're so grateful to have been the recipients!!!

So fast forward to January 27th and we find ourselves back at the surgery center full of excitement to try something new.

 Ready to rock this surgery!
 Alex is now at peace with being put under and no longer needs the "silly med" Vercede to ease his fears.
 Sure love this kid!

 I used to always climb in the pre-surgery chair with Alex to keep him warm and calm his fears.  I no longer fit in the chair and Alex doesn't seem to need me quite as much as he used to.
I posted the following on facebook right after they took Alex back for surgery:

Bam! Surgery time is on. Excited about this experimental surgery of putting a newly approved sinus stint in Alex's ear canal after it is re-drilled this morning. Alex was super stoked when they let him keep his undies on for this surgery. Birch and I were just commenting to each other how much easier this going on Alex's sixteenth surgery. Was so much harder back in the day when he was wheeled away in the red wagon drugged on the "silly medicine." Feeling blessed for modern day medicine, inspiration from God on a new idea, insurance, a great doctor, and a brave son!!

Three hours later Dr. Black finished stitching up Alex and came to give Birch and I the surgery update.  After getting in the ear Dr. Black decided that Alex had so much nasty scar tissue that he decided to not only re-drill his ear canal but also put in a new skin graft from Alex's neck.  Dr. Black said he actually broke the first drill bit as he was aggressively drilling away.  He attached a facial nerve monitor as he drilled to make sure that he wouldn't drill into Alex's facial nerve and cause permanent damage.  The end result is an ear canal almost one centimeter in size compared to the tiny pencil lead size one he has been sportin' for several years.

The recovery was a bit rough with vomiting and feeling all around lousy.  Alex ended up staying home an additional day of school but was feeling mighty fine by the end of the second day.

We have yet to know if the stent is doing it's job (holding the transplanted skin around the newly drilled ear canal and providing pressure thus keeping the new ear canal open while it heals).  The stent would normally dissolve in thirty days but since we are using it in an alternative form (perhaps for the first time ever) we do not have any precedence to compare it with.
 This diagram shows the stent applying the pressure to his ear canal (well, this is actually a sinus)

We're praying that this surgery provides a little break from the yearly maintenance surgeries.  Wouldn't it be great to go like two years??!!!  Even more we would love it if Alex could actually benefit from his ear canal and hear out of his ear.  Ahhh, the perks of having hearing out of both ears!!!

We're grateful for all the love and prayers that have been sent Alex's way!  How blessed we are to have insurance (even if it isn't as great as it used to be pre-Affordable Health Care Act)!  What a blessing it is to have a doctor that allows God to guide his hand and mind!

Tuesday, February 4, 2014

Cub Scout Nate and the Space Derby

We haven't had a pack meeting for a few months so Nate really reeled it in this month!  Nate received his Bear award along with several arrow points and belt loops.
Nate pinning on my mother's pin for being Nate's right hand "man" in helping with his Bear advancement.  I am the primary second counselor and over the cub scouting...thus the cool official scout shirt.
Not the crispiest picture but I love it anyway because Nate is giving his momma a squeeze.
After the award ceremony it was time to kick-off our Space Derby.  For years we have held a pinewood derby so this year really threw us all for a loop with the decision to try a new derby.  The main reasons for the space derby was to get away from the competitiveness of the pinewood derby, having the boys do more of the work on their own (almost all of the carving, building, painting was done in den meetings -- means less dad's taking over), and just taking something new.
Nate did a great job carving and painting his rocket.
Ready for take-off!

I volunteered to make the boys' prizes -- after many donations of toilet paper rolls I created these candy filled rockets.  The boys were pretty excited with their prize.
I decided to make a big rocket out of a paper towel roll for all the little siblings that wished they were cub scouts and would have loved to have made a rocket.  I did it kind of like a pinata with breaking the end of the rocket and then shaking all the candy out on the ground for the kids to chase after.
Quite the astronaut!!!