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!

Our 2 little men

Things have been going good. Kinda feels like we got thrown back into it all! (nice but dang!!) Skyler is back at Danas our day care. I am at work...will have worked a WHOLE week by the end of this week!! *gasp*

And Skyler is still moving at high speeds. Even with out his "pokeys" he's busy. Unsure if the swelling is swelling or if he has big cheeks now because of everything. It may settle over time. Right now hes got his big head back :) Today we had our 1st visit with our new OT (occupational therapist) She is very nice and I can see really is excited to work with Skyler and develop a nice relationship with him. This is something we miss so much from our time with Heidi. Skyler still asks about her :) So today with Miss Amy we started doing some brushing/joint compression protocol. I am excited, I have heard alot about this, and hope it is something we can get Skyler used to and actually see it do it's "magic". Why would we do this, well an article I read states "It primes the brain to receive and organize information in an effective and useful way." Which i see the reason for Skyler and his turbo mode. There is alot of other benefits for this protocol and alot of it stems from Skyler and his vision impairment. Like I said I do hope we can acheive the relationship and the skills back we had with Heidi, for Skyler's sake. He has come so far.
Both boys will be having a birthday here in a month and a half. That is crazy. Skyler will be 7....oh my word my baby is 7!! It has been 7 years of pure bliss with a shot of chaos added to it :P
And little mr Seth will be 2. He has begun to show us that some kids develop their terrible 2's at age 3, like Skyler. Some really like to do it on time at the age of 2...and then there are kids, like Seth who decide that waiting a few months to become a terror is completly un nessecary! He's a sweetie pie still but has learned his crys get more attention. This boy has a set of lungs!
We get a break from the dental clinic until July 20th. I really couldn't tell you WHY or what reason we have to go back for , but possibly to do an x ray to make sure we haven't broken things .... ha ha ha that would be something amazing wouldn't it.

I finally got the letter from the dr to the DDD gal for nursing...too late I think for that "help" but it is a really nice letter. Explains Skyler's situation so nicely. Sometimes when I try to explain what is going on with Skyler I feel like my hands are doing most of the talking by flaring aroudn trying to make sence of what I know in my head...you know small jaw ya da ya da.... No really it was nice he got a letter for us, it just happen to be 2 weeks too late. :( boo.
Maybe I will submit it to Group Health to see what they can make of it.


Well there ya have it. Another update from our crazy house
Talk to you all soon.
All our love
Casie Mike and the boys

July 6 2009

I think we can consider this the last day of this procedure, tho honestly I don't know. Skyler had the pins removed today, it took a whole half hour total. But it meant he can now give close hugs, kisses and we can hold his little face again with out the "pokeys". It's nice to have his face back :) There are 2 holes at his chin but they really just look like scabs. The bars in the gum line will stay for another few months until his jaw heals more, they aren't in there serving a purpose anymore, but the dr didn't want to risk damaging bones taking them out today, so regardless there in.
Skyler is happy to have his pins out I guess I didn't really think he would notice, but man when he asked what we were doing this morning I told him going to the dentist to get his pins out, and he reached up to them and said "these? right here?"
*sigh*....

While Skyler was in the OR I ran into his pediatrician who follows Skyler for all his specialties. He had no idea that things had gone so crazy with this procedure! He was the one who pushed this choice to get the trach out, so it was weird to see him so shocked finding out it hadn't gone as planned. Needless to say he told me he would be talking to the oral surgeon to "re group"

We made it out of there with out issues, it was when we reached inside the city limits did Skyler decide he needed to become car sick!!! LOVELY!
Any how, we are good, Skyler is well, and things shall prosume as "normal" .. bahahaha!!
We have a week off from Seattle travel, might be nice to not sit so much.
Till next time
Casie and Family

Skyler is stronger than Titanium

Those were the words of Skyler's oral surgeon on Thursday afternoon. The above photo is Skyler latest, the Right side (longer bar) is broken again, you can see a small amount of space in the middle of the 2 plates, but on the front plate closer to the chin you can see where the bar has broken away from the plate. This has been a set back again, all the turning we had done the past few days hadn't done anything because it wasn't connected at all
I had a feeling on Thursday that something was wrong, but I really was hoping that it was just me being very paranoid!

It was sad, a big let down I could tell Dr E felt very very sad as well. He told me he was happy with what growth we did get but we wanted more. And it may or may not be enough to succed with decannulation next year (time will tell) Skyler's jaw might be more lop sided, or it won't look that bad at all, (time will tell) and in 6 months to a year we can re evaluate our game plan (time will tell)

My heart hurt for Skyler that afternoon. I felt so bad for puttng him threw all of this, and not even acheiving the goal 100%. He has these knarly scars now, although I keep telling him "Chicks dig scars" so hopefully with anything, he takes that away with him :)

So Skyler is scheduled to have the turning pins removed on Monday the 6th of July. Its a 10 min procedure but we have to do it under anestesia, it would be too complicated to have him hold still and not flinch to remove them. This weekend tho I am affraid Skyler has been more careless about being calm and less bouncy, I keep thinking what more damage can we do to this project? Really its been insane. Every bump fall crash We jump to his side to see if hes busted something, and there isnt an way to really tell until x ray day. And I am not sure what more they are going to watch for now. Once the pins come out the bars under his jaw bone will stay for support until September (even tho they aren't connected anymore) I dont know if its possible to lose the growth like we have done before...Hope it doesnt. I really just want this to be over! I am so done.

I am done done done done done!

I hope to post pics from our fabulous weekend soon! We took it upon our selves to have a good time!
All our love

Casie Mike Skyler and Seth