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

It truely has been an adventure

Yes we are home. How did we manage that...I have NO idea!! The past few days had been very frustrating and drug out, I was unable to get a clear answer from really anyone who had that knowledge, or even talk to the dr for that matter! We had crossed paths a couple times, or they just were too busy to come up to the floor to see us. *sigh* But finally yesterday at 1pm I got a call from Dr Egbert who called to tell me the charge nurse wanted to move Skyler from the surgical floor to another floor as they needed our single bed (the chance was we were going to have to have a roomie, that is never fun!) I had told him fine but also asked him if we could "tomorrow" go to his office for the panorex x ray (its the panoramic x ray) to get a clear more accurate answer. He agreed that would be just fine. So that made me feel a little better, hung up the phone and not 5 min later his scheduler called me and asked if I wanted to come TODAY before 3pm for the x ray. We jumped on the opportunity and were there by 2.

Once the x ray was done the gal brought it to me to see, it looked good to me, I was wondering to myself what the heck they were so worried about, there was great separation between the jaw, it looked like a great amount of growth!

So what you are looking at is the side with the shorter rod in it is the LEFT side and you can see on the last set of Molars in the pic underneath is 5 screws and then the gap which is new bone growth and then in the far back you see another set of dots (supposed to be 5 - 6 screws there) I cant tell how many are there actually, but apparently they are loose and not connected to the bone any more. The growth seems to be stable but as the other side continues to distract and push his lower jaw down and out, it will go off to the left side some because there is no more resistance pushing the LEFT side into it and down...so that is where the dr got the "its broken and we cant fix it until next year" in my mind, it was the whole thing was for nothing and tough luck...you know "worst case scenario".
But the LEFT side is done turning. The pin is so small it actually is digging into the skin as it gets turned each day, so no more turning. The RIGHT side (the longer rod in the picture) is almost done. We will have 1 more photo opportunity done on Thursday the 2nd and then we are scheduled to be D-O-N-E with turning on the 6th of July and the rods will be taken out. The bars connected (or not connected completely) to his lower jaw will be left still as the bone completely heals and hardens, that will be taken off more towards end of August or early September.

As for how we got home...the dr felt sorry for us?? I really don't know. We were being good and not asking about it, the nurses were moving us out of our room after 3 yesterday, so maybe he just figured it was time. As long as I sat on him at home :) So we will see I am nervous that something will happen (who wouldn't after all of this?) but I really am hoping that that little tiny dot I see is the "light at the end of the tunnel" ... either that or I need to go get checked for glaucoma...

All right time to go unpack, do you know that in 13 days you can accumulate ALOT of stuff?
Thanks to everyone who sent messages to Skyler in his room, he thought that was pretty cool. And also the visitors we got! Was sure nice to talk to people who knew us, and didn't wear scrubs.
We love you all!!
All our love
Casie Mike Skyler and Seth

Quick update

So dont have alot of time to go into details, but things are "ok" and we got to go home tonight! WOO HOO! I will explain all the details tomorrow, but its not as bad as we thought! :)
Good night
Casie and Family

Hanging in there

The last few days have been sorta uneventful. It's been a little frustrating actually. Haven't talked to the dr since, er what day is it.?..ok so haven't talked to the dr since Tuesday am. The day AFTER x-rays. And honestly I don't even know if everything is still going ok. He is making us wait till Friday for another set of x-rays to see for sure if something is broken on the Left side..you got it the surgery date of June1. ((Frickin figures!!)) I really don't know and have been trying to to worry about it too much the past few days, which is probably why I haven't posted an update on Mr Man because it only makes me sad. Sad to think all of this a waste, the past 2 weeks trapped in here was for nothing since IF the left side is broken they won't fix it and we will "re evaluate" next year. Which in our minds next year we were HOPING to have an answer on when Skyler's trach could come out. I've tried to be strong, and sane, and open minded about it, but really....it just wasn't in the plan. I have talked to a few people about it and they have given me some advice like I don't even know for sure yet. But WHY would the dr say something, and then make us wait to know for sure!??!! Cruel don't ya think? Skyler's bones are just too fragile right now, which I suppose wasn't brought up as a risk to us. This never was in the "what ifs" and what could happen. So now I have been keeping Skyler trapped in the room as much as possible because I have been trying to talk to the dr for the past 3 days! We have missed him once, another dr from the clinic came down yesterday to let us know they hadn't forgetten about us (normal rounds are twice a day....but the resident that has been helping the dr last day was monday and since then communication hasn't been great) My goal today at 8am when they were supposed to be here was to ask to go to dental clinic for a panoramic x ray, for precise accuracy...not the radiology lab down stairs. But since it is a clinic day over there and the fact its almost 10am and I haven't seen them yet, chances are we will have to wait till tomorrow.

Tunring his pins haven't been bad. Friday night was when we bumped up tunring the left side 2 times in am, because dr had told us that it was close to healing and almost done and we wanted to get ahead of the game...now that I think about it, we had x rays done that Thursday and then they had sceuduled x rays for the monday following. I questioned it, if they thought there was an issue, "no no issue, just keeping close eye on it" so then on Monday after the x ray our nurse told me there was an order put in for Friday x rays, that really sparked my interest. Another one so quickly. so that is when the battle of getting ahold of a dr to tell me what the heck was going on and I ended up talking to someone who had NO idea what he was talking about.."oh x rays look good, haven't seen them, but sounds like all is well..." then the next morning dr E shows up and tells me otherwise.
I really don't like being left in the dark.
So all of this has turned into more stress...say it did break. The pain suffering and nerve damage we put Skyler threw, for nothing...the last month of school missed, (Which btw, I told the special ed director last tuesday her program was HORRIBLE...no joke. I was proud of myself...then i cried. :P She came back with "well I thought I was doing you a favor by allowing Skyler in our district this year" I told her I did too, and appreciated it until I relised her program stunk. Made me feel better for a moment.) Not to mention the seperation of our family, Seth has been in mine or mikes care for maybe 4 days total threw all of this. And the stress of not working much for the past 2 months. It stinks. And really, we regret doing this. What do they say "No use crying over spilt milk" bah!
On another note, found out if your here for a certain time someone is kind enough to recommend volunteers for you :) Skyler played for an hour yesterday with a gal in the play room. I got to have a cup of coffee and read up on the trashy magazines in peace and quiet!! It was nice, yet weird to not be with Skyler for the short time. He sure is getting sassy, yet starting to be a voice for his own needs. I can't believe he is almost 7, sure shows from time to time.
Our nurse today had Skyler for a few days when he was 3 and had his tonsils and adnoids removed. She didn't recognize him, but recognized me! that is weird.
Well that is enough ranting, venting for the day. Thanks for listening, its sorta theraputic :P
Please keep Skyler in your thoughts. Pray that the radiology techs take bad x rays and this is all a worry for nothing :) If I dont see dr today I will for sure post something tomorrow.
All our love
Casie and Skyler

Happy Monday

Hope everyone had a great weekend! I tell ya, I haven't walked that much in the past 2 weeks, or even the month as I did yesterday and packed Seth around! I am pathetic my shoulders/back are so sore!! I swear.

It was fun tho, we were able go in to the hallways and out on to the field and walk around the outside of the field Man they were strict and very protective over their grass, there were personnel all around the perimeter of the field to stop people from walking even touching it with their hands!

When we got to our seats we met up with our friends Katrina, Tyler and their son Parker. Over all the boys did great. Skyler did get tired and overwhelmed, the poor confused boy asked to go back to the hospital!! So by the 4th inning we were walking out of the stadium. It was shorter than we would have liked, but well worth it and Skyler really enjoyed himself, it just shows that 10 days and counting has really cut his energy down while being cooped up here.

We did x rays this morning, I dont think they are looking for anything except to make sure we are still doing well. There hasn't been any scares, yet I haven't been here either to see any :P
I was instructed to not turn the left side today because the pin is very very short, one dr is fearful that i might go into his cheek if I turn it twice lol. that just means that it is close to being done with that one!! (it was put in on June first and about 20mm of growth would be about right since we started turning I think on the 2nd or 3rd of June) so that is good, but will know for sure later. Yet we have still have to be careful with that side, so it doesnt collapse like the OTHER side did!! Fingers crossed

This is a few pics from the weekend. We weren't there long enough to get the "bunch" i was hoping for!
Have a good day
Casie and Skyler

Take me out to the ball game...Take me out to the crowd...

So VERY appropriate for Skyler, I think we are going to teach him that song before we head to the game tomorrow and have him belt it through out the hall ways on our way out :P

He is pretty excited, tonight when I showed up with Seth he told me "Mom we are going to the baseball game tomorrow!!" Half of me really thinks he knows what that means! This little man has become quite knowledgable over the past few weeks, it's cool but a little weird, pretty soon spelling out letters won't W-O-R-K

He is doing very well. Last night before I left for home, Dr Egbert came in and turned the pins (This was the first time we have seen him since Monday) and decided that the Left side (june 1 operation) should start to be turned 2 times in the morning and 1 time at night. It is getting very tough to turn, like literally cranking it...so he is saying the bone is healing nicely and so we have to get ahead of it again. The Right side (June 12 operation) is still doing well. The sight is still oozing a bit, but we guaze it up during day so it doesn't get to yucky. Turning that is going ok still. Skyler hollared tonight, but mike was sure it was because there was a scab...?? who knows anymore! His weight is great, he has had plenty of visitors (We thank you all!!!) and every time he blinks an eye someone is handing him a toy car, sticker, beanie baby or chocolate milk!! Honestly...that is the life.

And get this, those of you who really know Skyler and know how "busy" he can be. He has not one bruise on his knees!! No joke, his little chicken legs have had a much needed break from falling, bumping scuffing you name it they saw the rath of it... And here I thought he just needed more iron and all he needed was 9 going on 10 days in the hospital!!

Seth has enjoyed his stay with Gramma. He has started talking so much. I hadn't seen him since Tuesday and that was mostly a short visit and he wasn't talkin much. But wow!! We have words and even 2 words put together!! Makes me teary, he's almost 2.

As for mike and I. We are managing. He has been working his lil tushy off (like always) and visiting us for an hour or so each day. He stayed at the hospital last night and tonight which is nice I get to have a night or two in my bed! But I also finally got to work today. It was nice to have a change in scenary. I sure miss having my family all under OUR roof, tonight we all were but it was at Childrens, and both boys sitting in Skyler's bed and us on the sleeper couch doesn't count.

But I hope to get some good pics tomorrow with my boys and Parker (who invited us to the game in the first place!) It will be fun to get to leave for a while, tho I know those drs are very nervous...I got a "please please please PLEASE" be careful the other day. So we know they are doing a huge favor for us, so we better not mess it up right?

Hope all those Fathers in everyones lives have a great day tomorrow!
All our love

The Caughlins

We are not broken!!

I just wanted to post that the dr came in tonight at 7pm for Skyler's nightly check up. He also looked at the x ray from this morning and gave me reassurance that he thinks it looks good and also the radiologist says all screws and bars are in the right spots...PHEW! No joke, I was for sure something was wrong...no he hasn't had pain or anything, but really I didn't expect it to be ok for now.
Though he did say that they may decide to slow the turning down for a while (yes that means longer hospital stay, but not by much) so that the bone is able to catch up and begin to calcify.
That will be determined tomorrow.
Skyler had his bath today he is such a goof ball. He spun around in the tub on his bum and says "Ah this is great..." Kids say the darndest things!! He's been very good through all this. I am having to get creative with bribes/threats to keep him sane and calm. And the word "please" and "thank you" have been less and less spoken around here which is a bummer....we will work on it tho, I guess it goes to show he's very good at barking orders and getting what he wants...Can't wait to get back home!!
But we are still on for Sunday's ball game. That we are very excited for.
Have a good night and write more later.
All our love!!
Casie and Skyler

Yet another day

Turns out Skyler isn't the only one trapped here at Children's. Seems Buzz has had some sort of injury, Dr Skyler says it may takes days, possibly weeks for recovery. But Dr Skyler is positive that with enough love and walks, things will move quick.
Everything has been going well. We have had some visits from some friends, which helped Skyler and his spirits! He had his first breath of fresh air on Tuesday when Holly and her family brought Seth down for us, we all went to the play yard, I will tell ya Skyler sure slept well that night!
We also had Gramma Kelli stop in she was so nice to bring me some "real" food!! And a new friend I have met in the dental clinic came by for a short time while her daughter was finsihing up in the OR. It's been nice talking to Sam, her daughter is also having a distraction done, so having our stories to pass back and forth has been sort of theraputic.
And today we were surprised by our friends Michelle and her son Ethan. They had a clinic appt down here so they took time afterwards to say hello and bring Skyler a baloon and a multi colored night light, its very pretty and he loves it VERY much! (You know your friends know Skyler when they find the ultimate gift....light)
So here is the good news, Skyler was given the go ahead to go to the Mariners game on Sunday. We got invited by some friends to join them on little league day a few weeks ago, so when we got admitted for this period of time I was for sure we would have to miss out. Dr E was very nice in seeing we get to go, only if I could tell him who was playing....after some research...its the Arizona guys ;) So we found that out this morning and.....here is the "bad" news. I asked dr Abe to check Skyler's pins this morning, the Left side (newly placed) felt loose in turning last night after Skyler pulled his blankie up to his chin and caught his chin on it. So i mentioned it to dr today, he turned it and said, Yes it did feel funny, but he pulled on it and it wouldn't pull out, so that was a good sign. So we were planning on x rays tomorrow, but he sent us to Radiology today for them. I took a look at the pics, and to me they looked ok, "normal" But I am just the mom. So we are waiting to hear from them on that, I don't know if they will do anything. I think I will press them, if the case arrises to fix it, no matter what...but we will cross that bridge then. But it also could be me just super duper parinoid! (I hope its the latter)

As you can see he is still all smiles. Has every nurse down here wrapped around his finger. Hope every one is doing well.
All our love
Casie and Skyler
(and the other 2 at home)

Good Morning Friends!!

Well first off, I need to clarify I think that the zone Skyler is in is Giraffe so his room number, if you wish to send a note, is G3005 I thought about this last night, I am sure they have a way to figure it out if one was send with out the G but, I am not sure.

Skyler is doing well. We are just finishing up a movie before we go and play. Dr Abe came in this morning and checked everything out. I asked about our turning times, the Left side that has been in place since June 1 should be comeing to an end here in the next week and a half or so. The right side, which we just started turning last night, they will monitor closely in about 10-15 days with x rays and such to make sure they get that side aligned up nicely with the other side, since he is crooked right now. I also asked the "plan" and he told me that he was going right up to talk to the other Dr to get clearer idea of his plan. He said, as much as they love Skyler they are pretty sure they can't keep him the whole time. So that was a little bit of good news. I really do appreciate their concern to get this done and not have to quit in the middle, but as you all know life goes on while we are hanging out in here. I mean heck I have a window that looks over the hospitals Shipping and Recieving dock...it's really pretty ;) But the dr that I talked to just a few min ago isn't the attending, hes a resident. So I think we may be in here more on the longer side of short. I did inform them all they had to do was write that letter of medical nessecity of nursing and we were able to finally get some help threw the state! (gasp I know!!) but it would only be temporary which was fine, this should be as well. *We will see*

Skyler slept well, has been sleeping well the nights we have been here. Which is so nice! When he was younger, I dreaded nights. He de sated, made his alarms buzz, cried, tossed turned, and just plain was un pleasant. So I can really see how much he has matured he is quite the little patient.

But we are off to the play room to paint cars. Thank you all for the phone calls and emails. You are all amazing friends!! Keeps me company even if you arent here.
All our love
Casie and Skyler

Send a note if you wish

I found this link for E-Greetings that can be sent to Skyler from anywhere. I invite you to do so I am not sure how he will get them, but I think it would be great for him to recieve some "mail" from time to time.

http://www.seattlechildrens.org/postcards/greetings.asp?category=16

if that doesn't work, you may also go to www.seattlechildrens.org and look at the patient and families link and somewhere on the page is a link for E-Greetings.
Skyler is in room 3005

Just a thought
:) all our love
Casie

An Update on Mr Skyler

It is still going well. I am not sure the exact plan, I am just the mom ya know :P The oral surgeons have been in today and started the turning process on the newly placed pin (his right side) and we are continuing left side turning with out issues, I suspect they will do x ray on Wed or Thursday, for reassurance. But that is just a feeling of mine.

Talked to the dr today about the teeth grinding. There really isn't much they can do to prevent this and i even asked about wiring his jaw shut, and he said although that makes sense, it would not allow his jaw to move forward...which also makes sense.

And we got our first visitor today :) Gramma Kelli came down and saw Skyler he got a cozy new Spider man blankie which he loves. He was pretty excited, he even showed her the play room!

These updates hopefully will be not too often, as when things are going well, there Isn't too much to report. I am kinda bummed (ha ha whats new?) but all the profile pics I was taking, I had intentions to make this little memory book for Skyler and now i think it might become some sort of encyclopedia, I mean really where do I start now LOL So any good ideas to do with all these pics, I have the time if you do :)
One good thing about this, is Skyler has been very generous with the luvs and hugs! He's become quite snuggly!
Hope your all doing well. Talk to you soon
Casie and Skyler
(and the other 2 Caughlin boys at home...)

Not alot going on here

Skyler being silly in his bed this afternoon

Well we are hangin in there, though its only been 2 and half days...Skyler is doing great. Eating drinking and peeing like a champ :) You NEEDED to know that I know. One of our day nurses came in when rounds were going on (rounds are when the drs of your child's team come in and talk to you each morning) and she asked the dr about releasing us, she couldn't understand why Skyler was here still when he's meet all their requirements for discharged...They quickly filled her in on our expected extended stay. So we are now labled the "in/out patient, patient" nice I guess, free roam, and no every 4 hour vitals...just trapped :P

Skyler had a good night. After being mad at me last night because I wanted to watch Ratatoullie on the Childrens TV and he didn't he began to cry " I want to go home" for an hour. And I think there really was tears, and real sadness...until about half way into it he just was being obnoxious. Then he fell asleep. *Sigh* If he only knew I really didn't want to be here either. His new thing, well it isn't new but more and more noticalbe...teeth grinding!! I really can't imagine it being a good thing for this procedure, he's not allowed to CHEW food, I asked the dr today is it ok to CHEW our teeth? She asked his surgeon and they said they would watch it, not a whole lot they could do. Well shooot, what if this is what has been messing us up the whole time!!?

Before I go, I forgot to tell you some awesome news....So Friday on my way down to Children's I was driving up the hill of 45th, and the radio station I listen to announced they were giving away 25 dollars in Taco Bell and some sort of smoothy from Tasty Freeze and to call then to win. I am thinking, hey why not...It rings and rings and rings...and they answer...and I win!! HAHA I am lame I know, but now I can eat down here :P

Anyways, Mike and Seth came and visited both yesterday and today. It was nice to hang out, the boys were acting like brothers today. Hitting and punching each other in the wagon on the way to the play room. Good Grief!! LOL

Seth watching a movie while visiting us today

Hope you all had a great weekend, and have a good week. Will post more as it comes :)

All our love
Skyler and Casie

We will not be "defeated"

It was a very very VERY long day yesterday afternoon. We were in the hospital at 3:15pm as told to be, and we were scheduled to be in the OR at 4:30pm. Skyler and I played in the waiting room for a bit, while waiting a family asked us if we were waiting for someone else, maybe they thought we were waiting for someone in sugery. I told them no, we were waiting to go back to be seen, it was 4:15pm, they said "oh, which dr?" I told them Dr Egbert, and they looked at me and said Sorry, thats our son that is holding you up. I guess their son when in at 11 or noon for a 6 hour surgery! I knew we were being put in where possible, but dang!! LOL so we got brought back to the induction area at 4:30, and by 7pm we finally saw the dr to go over the details, turned out an emergancy arose and so all the OR staff was busy then, so we had to wait, again.
By 8pm Skyler FINALLY went in to surgery. We sat in the induction room for 4 hours!!!! Mike came at almost 4:30 to see us off, but had to leave in order to get Seth at a decent hour, so he didn't even get to see Skyler off to surgery. By 9:30pm I was paged to go back to waiting area to talk to the dr. But he didn't actually come and talk to me till 10:30 or so! Skyler was still in the recovery room until 11, that is when i got to see him.
The procedure went well. They didn't find any malfunction with the device except that it had retracted, the treads on the screw are there, the screw functions properly. There really isn't a good answer as to why this has happened, except he is to busy. They put in the extractor bar so now there are 2 pins again in his chin. We had them check the function of the left side (last weeks fiasco) and it is working properly. And so we won't start turning until Tuesday, the dr says Skyler's poor jaw has been manipulated so much this past month that they must give it time to heal, so starting to turn the pin tomorrow would not be a good idea.

And basically this is our last chance...they will be keeping us until they feel Skyler is done turning pins, or nearly healed. They want to keep a better/closer watch on him. If this fails, either side, we will be done, as the dr says "have to accept defeat..." This does not fall into the plan we have. We did not expect to start this nerve racking procedure to get "almost done" and have to start over twice....and then in the long run, try again in a year. No thank you.

I really really hope we can complete this and that it makes somewhat of a difference. There is nothing like that internal motherly guilt, when the dr says this may not work...I felt like we should have never started.
So please bear with us, as this next month will be nuts, unorganized and pure chaos I am sure. If you would like to visit us, please do! Skyler would really really like that. We are in a shared room right now, but by monday I hope to have us moved to a private room.It just is much easier that way, especailly with Seth coming to visit, that poor little guy has been tossed about so much lately.
Continue to keep Skyler in your thoughts this week. And please enjoy that weather for us!
All our love
Casie and Skyler

Quick update
Skyler got out of surgery at 930PM tonight. It went ok, I will post more tomorrow hes not back yet and so I havent seen him too long of a night.

Wow!!
That was the longest wait to get into the OR. Skyler has just headed back I can expect to see him from anywhere from 1/2 hour to a couple...yikes!

They say "3rd time is a charm..."

Today was our follow up from our 2nd surgery last week on June 1st. Our week had been very uneventful with no falls, bumps or even un-easy turning of Skyler's pin. So we expected a smooth check up. Unfortunatly that was not the case. After the dr turned the Left pin and ordered some x rays, we noticed everything was good on the Left side (the longer side up above in the pictures) but what he noticed that made him very upset was that the side that last week they finished the turning/growing and took out the pin in the OR was now gone. There is no growth as it should be in the process of healing/hardening. What we should see is 20mm of light bone, and what we see is nothing different than last weeks xray.
The dr suspects it is a faulty device, we will know for sure tomorrow but it seems that the screws threads stripped and the device contracted back together, probably Thursday or Friday last week (the days we were discharged and more active). We were sent to the waiting room as the Dr gave the rep for the device a call to give them some "words", apparently this sweet little gray haired, peer over the rim of his glasses, feet shuffling man has a TEMPER...so the dental
assistants say :P
There isn't much way of choices at this point, no it's probably not the best idea to put Skyler back in the OR for the 3rd time in a month but we can't just leave this the way it is, his jaw is not funcitoning properly right now
We want this to be done and over with before school, so we need to find the right distractors and get the show on the road!! The dr will be using a different type of device tomorrow, one that opens from the back forward, unlike this one that opens from the middle outwards.
It is a frustrating feeling not having things go as planned. I am sad Skyler has to endure this again, and the days afterwards of pain. He is so strong, and never puts up too much of a fight. I can't even begin to tell you how amazing of a kid he is. I know that any adult would be milking this for all it's worth, and Skyler is more worried about when the next showing of BOLT will be or when he can have more pudding or Pediasure. Not one bit of complaining or saddness. I couldn't ask for a better "patient" We just hope that a fear of these sorts of visits doesn't develop and if it does that he can be comforted easily.
So Skyler will be in the OR tomorrow at 4:30, for a procdure to fix the jaw distractor that hopefully takes just over an hour.
Please continue to keep Skyler in your thoughts this weekend.
All our love
Mike Casie Skyler and Seth

Moving right along

I guess you could say we are doing well. Started back to work on Friday myself, which was a nice change of scenary. Skyler really enjoyed being at Dana's house as well. He was just too bored with me and it was apparent! Thought we had a break scare on Saturday tho, he bumped my knee as I sat on the couch and he came to me, for the rest of the day I kept asking if he hurt and how he felt on his chin, at first he knew he bumped and hurt it, but I think now he is ok. By that night when we turned the pin, he cried, which of course made me worry 10 times more. By Sunday mornings turn tho no tears...and he's been good since.

Seth gave us a little trouble tho! The poor kiddo has been absolutly cranky the past few weeks, and we have been taking it as he's almost 2, plus his little routine has been out of whack because of us always coming and going...until the spots started appearing. I took them at first as flea bites...then when we got to Dana's she assured me they were not fleas :( We were certain they were chicken pox!! Both my boys have had the vaccine, which in my opinion doesn't work anyway, Skyler got them 2 years ago! But I ended taking Seth to the dr last night for some guidence and they said it wasn't chicken pox, but a infection of some sort...so he's on an antibiotic for the next 10 days.

I am glad I didn't order a mellow life :) Because it sure seems good and or bad, things are always exciting around here!

Mike has been working busy long days too, about the only nice thing is he's got one heck of a tan!!
Nothing too much more to report until this Thursday, Skyler has another post op appt. (Please pray all pieces are where they are supposed to be!!) Today we are doing PT at Children's Therapy and then Skyler gets to go to "Bike Camp" he's pretty excited!! He is definatly turning into a 7 year old BOY! *sniff sniff*

Here are some pics from last night of his jaw. It's hard to tell any difference right now. The right side is defiantly more promonite now since the device has been taken out...I used to be able to picture how he would look, now I can't.

All our love

Mike Casie Skyler and Seth

We will be free soon...

So when Skyler started belting out this little "ditty" from, of course BOLT, I thought of one person and one person only....Katrina!! Sorry girl looks like you have some competition....(BAHAHAHA!!)

So looks like we will finally be set free today! Over all not been to bad of a stay. This morning I was woken up at 7am from a lab tech wanting to steal some blood from Skyler. He was asleep of course and why did you need blood I asked. Something about a 2 day blah blah blah...didn't make sence to me since we were leaving today, and NO you may not poke him right now... So she left, understanding why I didn't want her to wake him up and start the day off like that. Turns out the dr yesterday ordered blood work because of their suspision of an infection. The dr came in today and said No need for blood if he hadn't done it yet, Skyler's red puffy swelling was way down this am so mostly likely wasn't infection. (PHEW)

Turning his pin went with out issue and we are getting ready to clean up a bit and should be starting our last dose of med through his IV and by 12 should be on the road.
Well before we head home Skyler and I are taking a field trip to the Washington State Talking book and braille library downtown Seattle...exciting!!

I have met a few people down here, guess we always kinda do, but its been nice swapping stories and "battles" makes you really think about how FAR things really have come, yet I also notice how FAR we really have to go. :D
Talk to you all soon. Can't wait to get home and sit out on the back patio in this awesome weather, looks amazing from this window!!
All our love
Casie and Skyler

LOOK

Made me laugh, thought you needed to also
~Casie

Just one more night

Okie Dokie...here we are still. Though everything is good, Skyler is a little more swollen than they want him to be before they send him out the door. We started turning again on the Left side. The Dr filled out the turning card all the way to June 27th!! HOLY SMOKES!!! That is for ever away don't ya think?



Will write more later, we will venture out to the playground in a while I forgot how warm its been, they have the air blasting in here the balloons are blowing in the wind!
Oh you'll never guess what the chefs here know how to cook PB and J soup!! And here I thought that was going to be a secret Caughlin family receipt. Shoot again.
All our love
Casie and Skyler

Puffy little guy

So by the end of this week you may or may not be tired of looking at Skyler...sorry :P The pics i am posting are just to show you how swollen he woke up this afternoon...? dont know why, but the pics reminded me of when he was like 2 almost 3 and had a head the size of a melon and was too pudgy for his own good :) He was cute then and is still cute now!
Anyways, an easy mellow day. Once he got on the pain med routine (backed off to Motrin and Tylenol now) we just had to get him eating and drinking some, and he's doing good. Sleeping soundly and hopefuly for the rest of the night, except our night nurse just arrived and it wasn't obvious enough that Skyler is passed out in his bed that she should be maybe...quiet. Good grief peeps!
Anyways. Good night all, and maybe just MAYBE we will leave tomorrow afternoon.
All our love
Casie and Skyler

2nd showing of BOLT to start any minute...

Skyler this morning after breakfast, hes a bit puffier and shiny on the right side. Hopefully it will go down by this evening looks very soar.
It's nearly 10am and we are on the 2nd time around for Skyler's all time fav movie...BOLT, ya gotta see it! The hamster and pigeons make the dumb movie worth watching ;)
Skyler had a good night. My only complain/concern was the nurse we had lack of pain managment. She was very conservative on the pain meds. Skyler just had another major oral surgery and all she felt comfortable giving him was Tylenol! Yes he hadn't eaten but we could have tried to give him something with the other pain med, and the other option for pain was morphine, probably over kill but she also didn't see the need because he wasn't on the pain scale between 8 - 10 which would be crying and thrashing, So all night long he wouldn't swallow his saliva because he hurt. We fixed it this am. He's comfortable and even has had some food in his tummy. They are getting ready to do this mouth rinse with him...I am kinda giggling, "good luck with that" (The resident last night also wanted Skyler to wear these boot like thingys on his feet so he wouldn't get blood clots...???...) I told them go ahead but warned them he kicks pretty hard...they dc'd the order shortly after that.

I was hoping he would be feeling better today, I was hoping that it wasn't as invasive as a few weeks ago, but so far, he's acting the same way, if not a bit grumpier. So today is a day of rest, and movie watching, and book reading for mom.

I ran into a friend of ours who's son is Skyler's age, they are hear for a surgery last week and are hoping to go home tomorrow. Please if you have a chance say a small prayer for speedy recovery for our buddy Jadon, he's a pretty special friend to Skyler.

Talk to you all later. Thanks for all the loves.
~Casie and Skyler

Another "What the heck!!" Moment...

So surgery went well, it went a little over 2 hours, and actually they told me it should be an hour and 15 min, but then after 2 hours in the OR the recovery unit was "backed up" and so Skyler was monitored longer in the OR and then sent to recovery THEN at 7:30ish finally sent down to us in his room. He's cozy comfy passed out sleeping...Already has had his bed changed once (yOR didnt put him in pull up or cath him...ha ha)

So the "What the Heck" moment you ask...Well as you know we shouldn't be down here, we should be counting down the days to when we can stop turning each screw twice a day which would be June 6th. But instead we had an appt last week that showed somehow the right side had malfunctioned and hadn't progressed as the left side had. Over the weekend we continued to turn each side as told to, as nothing had changed "just in case" And yesterday I actually finally called the on call oral surgeon as Skyler's left side felt different after Saturday some time when Skyler came to me saying "ow" but I brushed it off as nothing, but yesterday he was just a mess, and I mean mess. He didn't want to leave the house and when I finally got it out of him, he told me that his chin hurt and let me give him tylenol. Seemed to help but our gut feeling was something else was wrong :( Dr told us he would look at it just in case, last thing we needed was to be here today, and on Thursday find out the OTHER side was messed up...
GOOD thing they checked. The right side (the one we thought was broken, lagging behind) must have been stuck, or not being turned correctly ?? between Thursday and today moved SO the dr then moved it out 5mm more and then removed the whole device from that side, its done, no more. (!!!!) So the other side the one that had all the progress on Thursday...well it broke, some how the front screws came out and all that growth is gone...Dr had to un-do it all and put in a new device and start from the beginning...its a little crazy. We were prepared to start over on the other side and really just wanted re assurance that the other side was just fine and not to worry. No where had we thought that we would be starting over on this side.
Dr just came in and said that yes its a set back, but Skyler is young, strong and healthy that it will catch up in no time. (SIGH) I hope he's right.
So we get to start turning the one side on Wednesday (yes we are here till then)
and then we'll be on our way. They did put in a more flexible device, not sure why now, but maybe they didn't know Skyler was so uh, "busy" so we will HOPE this works to keep pressure off where he doesn't need it, and keep us out of the hospital until this is over. (Mike and I both chuckled, at this rate they will keep us in the hospital until its done only cause they can keep tabs on MR til then...nursing what?)
Alright then. Please continue to keep him in your thoughts and wish us luck on this go round.
All our love
Casie and Skyler

Skyler just got sent to recovery *man they took every min of their 2 hours* will be there to talk to dr in a moment.

The surgery just started we hope it takes about 2 hours and they arent planning to put him in icu WHOO HOO!! Lol gives us a little more freedom.

Surgery Time for June 1

We'll again here we are another pre surgery weekend. We found out we have to be at Children's at 1:45pm tomorrow the 1st. Scheduled to be in surgery at 3pm. And now it may take a bit longer because we just got off the phone with Dr Estes who is one of Skylers Surgeons and told him that Skyler's other side is acting weird now. (This kid is going to land him self a nice spot in the hospital until this thing is completly finished if hes not careful!!) It's loose and wobbly and when we turn the screw it has no resistance. UGH! So the Dr. mentioned he would take a look tomrrow at both sides. So that in a week we don't have a check up only to find out the OTHER side is broken...could you imagine!!??!
I told the dr Skyler was in need of a slow down pill....he laughed, I really wasn't joking tho :P
He had mentioned something about a flexiable arm distractor...?? I dunno but sounds $$ LOL He said they aren't used to this happening so they will try and get it so it wont happen again. PHEW, thank good ness right?

Anyways. We will keep you posted. The nice thing about the surgery times tomorrow is Skyler can actually have breakfast! So I dont have to fight off a cranky hungry 6 year old for to long.

Please keep him in your thoughts for a quick stay and speedy recovery! (again.)

all our love

Casie Mike Skyler and Seth

MAY 4 2009

MAY 21 2009

MAY 28 2009

As you can see the top photo is Skyler 11 days before surgery a frontal view of his jaw, the the 2nd picture is Skyler a week ago, the dr was very happy to see equal amounts of growth between the spots in the back above the bars there are gaps you can see tho the bone is not visible because it is not hardened yet. And on the last picture on the left side you can see a great amount of space and obvious signs that the distraction is working. Unfortunatly not the case for the right side. It is almost exactly the same as a week ago. Hasnt moved at all. So thats why his jaw looks lopsided. You can even tell how much its affected the placement of his teeth right now. Look at the first pic and the last pic everything has moved over greatly.

Skylers surgery is Monday the 1st of June they will be giving us exact times to be down there but we are told his surery will be at 3pm, and should be another 2 hours and will be an over night stay. It's just crazy. We were so confident that things were going to go so well with this, and that it was the right decision and we would see no problems. But we should know by now that nothing comes flawless. I guess I wouldn't be so bummed except the dr. seemed so bummed and baffled on to why this happened. And then by the x ray he couldnt see the problem.

Like I told the dr tho, Skyler has never done things the easy way, why start now.

Any how, we will make it over this bump. It might take a little longer than first planned, but there's gotta be a reason behind it somewhere.
We are off to spend the day in the beautiful sunshine now, hope everyone enjoys the WHOLE weekend!! Its so nice to actaully see seasons right?

All our love,
Mike Casie and the boys