So the point of the update was?

I was just so tickled to make the background so pretty and put some pics up I completely forgot to up date the "Skyler situation" . We went down to Childrens today for our yearly Clinic appt (4 months late, but who's counting). We were instructed in August by his Oral Surgeon, who did the distraction a year and half ago, to get a CT scan so he could evaluate it and put together a plan....
wouldn't you know that today was the first time he actually looked at the pics! Silly Silly Dr.

Skyler had his hearing checked. Both tubes are in place, left one seems to be blocked or something slightly as the air didn't flow through it as nicely as the right. During the tests he did good. I love watching him perform and "get" what they are asking him to do. We went so many years not being able to do all these things, that I really enjoy being able to sit back and let him speak for him self, manage tasks they ask etc. Its a relief.
So the results of hearing test were normal hearing in right ear and Mild to Moderate hearing loss in Left ear. Now he had a ear infection a week ago, he's still mending. So we wont really know for sure if its due to that or a permanent issue.

Our ENT says the left tube is close to coming out too, which could also be a reason for loss. (that's why he had them put back in 2 years ago anyways) too many loud WHATS and HUHS. :P
Dr Perkins (ent) also gave us some hope that trachless days may be in the future. A while back he had mentioned to me, after the distraction disaster, a procedure called Tongue Base reduction. Yes, it's what it sounds like. His anatomy is so small that the tongue simply rests against the trachea wall. Literally blocking airway. There is a chance that if they reduce the size of that it could make more room for air to flow freely, eliminating the need for the trach. He said the only issue it could really make was some aspiration issues (swallowing fluids/food into lungs) but not really likely. There seems to be no real risks aside from that to do this procedure. It is painful a two week long sore throat. But our other options are another jaw distraction (upper and lower) an we dread that. and Also an airway reconstruction. They would take a rib graft and place it in the windpipe to help keep up the floppy airway. This is a MAJOR surgery. Like a week in a medication induced coma...mmmm this mama isn't so keen on that. It would probably do the trick, but is SO risky! SO time will tell.

He's also a candidate for Camp Korey this year! Its a week long camp in Carnation for kids with facial differences. Nurses/Dr's on staff 24/7! Mom and dad just have to be ok with the week with out him!

I think that's it. In 6-8 weeks we will hear from his team of Dr's to see what they decided...and we can hope its something successful and possible to do during the summer!

~Casie and Family

WHOOPS!

Well I've come to my senses...I'm back, I will keep this up!

Things have been SO quiet over the last year that I felt no need to post, sad but true! We gave Skyler the year off from any major surgeries/procedures. The kid developed a bit of a complex from all the visits...anxiety much?

He's a trooper.

Where to Start....

Last I wrote we were just celebrating a LARGE victory over insurance coverage! I swear to you I have NO idea where we would be now (even with out major surgeries this year) with out medical for Skyler. To let you in a little secret...Mike and I were members of a church years ago, and even baptized with them, Skyler even. We fell out of the "routine" of church and faith for so many reasons that aren't acceptable. But since our victory in March '10 we have learned to become more reliant on God. We feel it was a sign to us. He has begun to lead us on so many journeys, that the insurance battle was just the beginning.

June 26, 2010

I ran my first 13.1! Yes Miles. No joke! It was hard, but OH SO WORTH IT! I ran as a member of Team in Training. Team supports The Leukemia and Lymphoma Society. I raised $2500.

I ran in honor of a dear friends little boy Christopher "Topher" Hastings. Tho he's not diagnosed with Leukemia he is battling a rare cancer that affects the liver. I caught the runners bug. Since June I have completed another half marathon a full (26.2 miles) marathon (BTW, NEVER AGAIN) and a 10k. I'm still figuring out what is next. Fun fact tho, Mike has decided he enjoys this as a pass time as well. It's kind of cute to be able to run with him, even tho he's a million times faster than I! We WILL become Half Marathon Fanatics soon.

Birthdays!

Both the boys had their birthdays in August. We actually took them to SilverWood with their cousin James and Aunt and Uncle. We as a family decided this WILL be a annual thing! Family is SO important!

And the Rest of the Story...

Well not so much more to update on. We are doing well. Mike has been able to stay busy with work this winter, maybe a couple weeks off total.

Skyler is doing great in school. Seth is doing well. We sure miss Dana, we took him out because of Mike's sporadic schedule and the $ we were missing from work. But the boy needs preschool soon! He is one smart cookie!

Christmas was great. We took the boys to Great Wolf Lodge (we are a water family, can you tell?) they were very impressed and not so concerned that they didn't have much to open this year (phew).

Last Wednesday I turned 30! EEK! It wasn't as bad as i thought it was gonna be. The only bad part was waking up at Children's that morning as Skyler had a few teeth pulled the day before. But we went home soon after breakfast.

This past weekend me and 12 of my friends (who are AWESOME!) spent the evening at the Tulalip Casino! VIP style! it was SUCH a blast! Each and every year from now on

I'm gonna be 30.

Till next time

Casie and Family