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

A milestone!

So over the last 2 months we have been apealing with our insurance company to get Skyler another 1 million dollars in medical coverage...ya I said ANOTHER. The kiddo has blown through in 7 years $980 THOUSAND dollars. We were really on either side of the fence with feelings on which way the "board of trustees" would go. We really couldnt tell you how it would turn out. It took a whole month for them to make the decison that YES they would allow an increase from 1 mill to 2 million in coverage. Not just for Skyler but EVERYONE in the entire Iron Workers Union! GO SKYLER GO!!

We are so blessed they found it in their heart. It was a hard day to go down and talk to them about our daily life of how it would be WITHOUT insurance. Even to the typical healthy family it could be catostrauphic, but really a kid with a trach simply cannot go with out insurance. So to say the least we are relieved. And in 10 years as we come accross skyler reaching his max we hope we will have other options forhim, but we will no longer have to worry :)

13.1!!

Gosh oh golly! Time has passed, from Birthdays to first days of school, Halloween and Christmas!! SO sorry!

The boys are well and growing like weeds!! Skyler is in the middle of Kindergarten at Little Mountain Elementary School and we LOVE his teachers!! Seth is at Dana's still and learning to play like a little boy :) He makes us so proud. Well they BOTH do!

Mike was off work for about 2 months around Christmas time but is now working in Everett at a paper plant Yah for money!!

I am still counting pills daily at Hilltop :) I love my job!

Our biggest news so far this year has actually been more my news but with 3 of my biggest fans to follow me through this journey! (whether they want to or not!) My cousin has convinced me to join a really awesome organization called TEAM IN TRAINING benefiting the Leukemia and Lymphoma Society. I will be running in the Rock n' Roll Seattle Half Marathon on June 26 2010 and my cousin will be doing the ENTIRE marathon!! (she rocks)

If you get a chance...please take a look at my fundraising page. I am actually running in honor of a little guy named Christopher Hastings who is in the middle of a battle with cancer right now. Hes only 2 years old. http://pages.teamintraining.org/wa/rnrseatl10/caughcasie is my page. Please pass along the URL as anyone can look at this and contribute! Your generosity is greatly appreciated!

So I will keep you updated on this latest event! Its kinda nice to NOT be posting about hospital stays :P tho....this sort of falls into that category, but not for us.

Take care
Casie and Family

It's ONLY Wednesday!!

Alright, so a quick update!! Skyler is doing great, aside from the FLU! Yea it found the Caughlin home!! He was diagnosed with a flu, not "the" flu, they can't really pin point Swine and/or Seasonal...but know that all his symptoms are exactly that, the flu. And the swine is going around the Valley these days. But that was Monday and it is now Wednesday. Monday we thought he was on the mend from a nasty cold, him and Seth actually. Low grade fevers all day and the nice deep hacky cough. By 5pm Skyler's temp spiked to 102.8! YIKES. So now hes on his 5 day treatment of Zithromax for green boogies (love that trach) and Tamiflu for flu like symptoms. It's not a cure all, but sure helps subside the nastys I think we caught it on day2 maybe 3 and they say if by day 3 you can get on Tamiflu you can help decrease severity. SO Monday the 19th here We come!!! Seth on the other hand I can't tell if he is comin or goin from this stuff! He was in the ER on Thursday night with croup. We have dealt with it before with him (hes mostly healthy boy, but usually can have the narrowing of bronchial crap...whats with my kids LUNGS!) but Thursday he woke me up from a dead sleep with that high pitched wheeze. I tried all the tricks and no luck so we trotted off to the ER. In and out mostly. First croup case of the year for the dr. Yea us.

Mike had a few classes over the past 2 weeks for PT decks. (another cert for work) so he's all refreshed on that. I still count pills by 5's. :P and nothing exciting going on there, which is good!

Oh, Mike and I both decided to better ourselves!! (it's possible, we can get better than this he he) I have started a 12 week boot camp at Mt Baker Crossfit. I LOVE LOVE LOVE this gym!! I did it about 4 years ago and was so succssful in weight loss and strength training, I have always said...IF i ever got the chance to go to a gym again, i would fork the money out for Crossfit ONLY!! And I have been able to do that! Its a 3 night a week 1 hour long class where they literally make sweat drip from your eye balls!! :) So far on week 3, minus being sick and 1 day missed cause of sick kids I feel so much better already plus I have lost 4lbs!! Thanks to the awsome trainers and the ZONE diet (its not a diet its a way of eating now)

And Mike has started taking MUI THAI classes. Nuts huh? He likes it as well, but also has had to skip a class due to illness. Why did we start this in the middle of cold/flu season??

Thats enough for now. We are gearing up for the holidays, as they quickly approach! We were at Target a week or so ago, the counter to Christmas was 80 days or so...Holy Moly! The boys are super excited for Halloween I cannot WAIT to share pictures on here of them, they are so cute!!!!

All our love
The Caughlin's

Whoa where had time gone?

Another lengthy delayed update on the family. Where shall I start?? How 'bout right about mid August...

Both the boys had birthdays. Skyler 08/21 and Seth 08/24. It was INSANE!! We were able to find a inflatable water slide to rent and set up in the back yard and had a water party for them! There were so many little boys running around our house (+5 little girls, but they were totally out numbered) So besides the party, we did CHUCK E. CHEESES, the Zoo and all around made the boys weekend specatular, it was fun.

Although it seems this time every year I reminise about the past we had with Skyler. Seth has been such a breeze that I often compare them, at certain points I can tell you that the stage development Seth is at now, Skyler was far from, and how weird it is to look at pictures and see kids the exact same age but sizes, personalties are so much different. Skyler has come so far its incredible.

We were still in the hopsital at this point with him, he wasnt even trached yet (which btw...Septemember 20th is his anniversary) So much was still a mystery with Skyler that being able to have him be 7 and active makes things so much more easier to accept. (on the good days)

We also went the waterslides...yea, we took our son who is trached to the waterslides :P he did amazing! (hes capped, so its not like he inhaled gallons of water) his favorite ride was the River raft ride, and then he decided he would rather play bouey in the wade pool. The kid is a fish! Seth loved the little kid water slide. Fearless.

Skyler had his first day of school!! We have an amazing set of teachers this year. I am so thankful for them (its early in the year I know but I just have this feeling!) We have already had more communication and contact with the school this year compared to last and its ONLY the 2nd week of school! He did have to repeat kindergarten this year, and I have yet to fully except it, but I am becoming more fond of the idea (like I have a choice in it anyway) This seems to be a good decision. Skyler WILL full fill all expectations of him for a succesful acedemic experience, I just know it.

Seems like its all about Skyler this note, tho I guess it was all started because of him. And simply put...no news is good news. And Seth seems to be doing great. He dodged shots this week...but we will get him next week. (poor boy) Hes starting to become a champion climber, we were just saying last week or so how lousy of a climber he was, short legs are not very helpful. He is spitting out new words daily, its nuts! He is always putting smiles on peoples faces. I love that my boys are charmers.

And sadly we had to have Skyler back in the OR once more on September 11. He had the last of the hardware that was in his jaw bone taken out. 1 night over in the hopsital and we got to see all of our nurse friends. Yea, they even just came in to say hi. Some had heard he was in patient and hunted him down. Friends for life I guess. But he is swollen and a bit sore, but nothing that wont heal. Dr Egbert confirmed with me Friday night that he will not be a candidate for Decannulation in the Spring (trach out) as he is for certain that the surgery tho we did get a bit over 5mm, it simply wasnt enough to take care of the airway issues. Sad, but we knew the risks that it "might not" be what he needed. Just put in reality...So they will go back to the drawing board. But I think mike and I are on the same page that we really dont mind the trach...well not all complty true, its tolerable enough that our little man doesnt need to be under anymore. I feel like the poor kid is ALWAYS being poked and picked...so till he grows, say 10lbs more...ha ha...we will see like in 5 years right?

I supposes that is it. Mike and I are doing well. Trying to find ways every once in a while to get out and enjoy one another kid free. But as you all know, that is easier than it sounds. He is working full time plus some in Seattle, he came home the other night with a T shirt on that said TEAM MEDICINE on it , for the Virginia Mason add on. but its a bright orange construction shirt. (hes so cute!) An I am back at work, have been full time since July. Yea me!
As more exciting news comes up I will post more, but till then we will be mellow fellows but feel free to comment on us :)

All our love

Casie and her boys!

A long over-due update!

Life in the Caughlin house has settled down dramatically since July 6th. In fact we have had 1 trip to Dr Egberts office since and don't have plans to see him again until August 31st for pre-op appt (yea, i really said that) and then scheduled surgery for September 11th. I laughed at the scheduler as she recommended Skyler go to the PASS clinic (pre surgery check up) as if he hadn't been threw it before in the past few months! But I could not argue my way out of the pre op with the dr, think its ridiculous, but who am I and what say do I have right?

Any how, yes one last surgery in September, that is to remove the bars that are no longer embedded in his jaw bone, but floating nicely in the pouch of his cheeks. You know that saying "Go big or Go home" ??...that is Mr Skyler's Motto. What we did find out at our last appt, which I can not remember when it was, 2 weeks after the 6th, anyways...what we did find out with some x-rays was that even after the pins were taken out and all is said and done, the bars have collapsed and so all in all more growth was lost. Dr E says that out of the 20mm we were hoping for in the very beginning we may have gained 5...count them, 5mm! :( so sad. He did show me on the x ray that the placement of Skyler's bottom molars in comparison to the top ones were slightly in front of them, which when we started they were slightly behind them...so we will take that positive news as it is given to us :)

On another note, since we have been MIA on here for a month or so. We have taken some time to enjoy ALL the nice weather!! We took the boys the bite of Seattle. We really enjoyed the yummy food and music, and tried to have the boys enjoy the International fountain..ha ha yea right! Neither one thought the giant sprinkler was awesome. Also were some trips to the lake with our friends Alicia Ryan and their boys. Skyler loved the water there! He floated the lake for ever, we even got brave and let him have the ring around his waist and let him walk in the shallow end, in another life I know this boy was a fish!
And last night we got some tickets from a friend and went to the little county fair!! Same ole thing each year but we have to do it! Skyler has done it many times and loves it, but Seth had his first experience with the GIANT inflatable slides and bouncy house! OH MAN!! We had to pry the kids away from there. Cute cute cute!

And both of them will be celebrating here in the next week! I can hardly believe it, and I know each year I say this and I know I will say it for many more to come! WHERE does time go? WHERE have my babies gone? Skyler has turned into such a young man! And Seth has left the baby stages and starting to be a boy. He does things that are so "kid" like. Insane I tell ya!
So next Friday Skyler is 7 and the following Monday Seth is 2. (sniff sniff)

I apologize again for no updates, cause I know each and everyone of you has been sitting at your computer checkin this site hourly :P I just took advantage of the lack of chaos and got back into the groove of life. Which some how meant, I get no more computer time! I even have had a hard time playing a game I got addicted to in the hospital. Oh well.
All our love
Casie and her boys!