Thanks For Making Me a Mom.

Today marks an anniversary of sorts. One that we had planned on for a little while. Well, plan really probably isnt the RIGHT word, but it will work. We planned to start a family, we planned your room, your name and heck when we discovered you wouldnt come out on your own, we planned to have you by c section on August 21, 2001. What we didnt plan on was a few things that lied ahead amongst all this "planning".

Skyler James Caughlin

8/21/2002

12:28pm

You came out screaming your teeny weeny head (Who am I kidding...You were giagantic at 8lbs 15oz and a head the size of a toddler, you can thank your dad). Anyway, you were loud and made yourself present. I still remember about every detail of that half day. The tears of joy, the initial sad 'oh darn a cleft palate', the fact you had extra fluid in your lungs you struggled with. Your sweet scrunched face I got to kiss when your dad brought you over to me. I was in love, and oblivious to what we faced. You continued to bounce around in stability and so did I. The pain of a c seciton, if you havent had the joy of having one...well it sucks. I asked, BEGGED them to let me go to sleep. So they did.

Probably an hour later I was abruptly woken by my Dr. He continued to inform me of the issues Skyler faced. Still high as can be I tried to process what I could. Between that news and becoming so violently sick from anesthesia, it was a LONG LONG 8 hrs before they allowed Mike to bring Skyler in and let me hold him for a few moments.

It wasnt until 3 days later did we really get a grasp of what was going to become our life.

I relive this day every year at this time. I dont know. Im sure all moms do, its the birth of your child. But I really hope one day I can think about it with out becoming a weepy mess. Probably a form of coping.

Today you are not here with us on your special day. You are hopefully being treated like the prince that you are at Camp Stanley Stamm in Wilkeson, WA. How awesome is it you get to be at Camp on your day! they said you would be thrown a big party, I sure hope that is true!

 It seems very weird that Mike and I have been "mom and dad" for 11 years. (almost as crazy thought as Husband and Wife for 12!)

Today is a little bitter sweet and alot of memories come rushing back. Im sitting at Children's waiting for Spencer to come out of eye surgery, again.

                                    Smells, sounds, sights, all very familiar to me right now.

I walked this hall today, I remember waddling as fast as my mending little body could after skyler on a gurney. Today as I left the pre op Room Once they took spencer, I really reflected on where we had been and where we are going as a family. And how much we have grown and learned in 11 short (but seemingly long) years. I know many people have walked this walk, and thought these thoughts, and even had more saddening outcomes than our family. I chose to look at the good. I want my kids to feel their purpose, and not pity.

  But I can't say enough how very thankful I am for this hospital. Our family, friends and communities around us are so very lucky. 

Until later this week (I promise)

All our love,

Casie and all the boys 

Coming Soon!

Turns out I'm terrible at blogging! I may get better in the next few months.
WE ARE HAVING A BABY! ... tomorrow.

 

Our boys are utterly excited. Skyler has been telling every checker at every store we were at today that his mom is having a baby tomorrow. That boy melts my heart.

Here's the scoop.

This time last year we weren't sure if adding another Caughlin to our family would even happen. It certainly wasn't happening in a timely fashion. Last December we decided to seek help from a Dr. After 3 months of "help" we were told we were pregnant! Great news. With the many nights we spent praying for this miracle and the number prayers being sent our way for it too, things couldn't have been more perfect!

Pregnancy is such a blessing. I am fortunate enough to NOT get green and sick..tho maybe it would be different if I wasn't carrying ANOTHER boy! But my boys will always take care of me, that is my hope.

 

We will be delivering down at the University of Washington. I know not many people know this. We are hoping being closer to resources and hi end technology that things will go smooth. We are anticipating some bumps in the road, but have been advised they could quite possibly be mild. Of course our minds send us into a flash back of 10 years ago when we were hurled into parenthood of a very fragile sick baby. Like I said, we are praying this isn't the case, and if it is...well we are covered in all areas. I've been seeing high risk Dr's for 6 weeks. I have met with a few of Skyler's Dr's from children's to get them on board of the "what ifs". This are going to be OK. We have faith that it will be.

All we ask for is prayers and support.

We prayed so hard for this little boy, and God gave him to us just as he is intended to be.

 

I am terrified. And am excited all at the same time. My emotions all day have been way hi and very low. Its hard to explain. My 2 beautiful boys here right now with me are going to become BIG and BIGGER brothers! Yikes!

With all this emotional energy I've gotten 2 loads of laundry done, vacuumed the stairs and up stairs, mopped the floors and all the bathrooms are spotless! Ya for nerves!

 

Please be patient with us. We want to share our blessing with everyone. And we will as soon as it seems fit. His stability and health comes first.

 

Here goes nothin...

 

Did I get the memo?

I've been meaning to write for what seems like a year or two now. Life seems to just happen and get in the way-and the non essential things defiantly get put aside.

I needed to share my experience of whats been going on here at the Caughlin home this past week.

School has started. And oh what a joy school is. The battle starts at 6:30am and usually will calm by 8pm at night. (I understand this is a common household occurrence....and I sure hope you other mama's start your work day sweaty and frazzled like I do. Say yes, it makes me feel better.)

Seth just finished up soccer through the Parks and Rec. He LOVED it. He gained some friendships, which at 4, its pretty valuable and extremely cute! He gained alot of confidence in this short time.
One thing we noticed is Skyler was really wanting to do something. mostly cause I think he saw Seth got to be in the spot light and naturally Skyler would like to be in one as well. He got sad when I told him soccer wasn't for him

(no contact sports for that cute blond boy.)

So that night I went searching the Internet for safe, fun things for Skyler to participate in. We did t-ball a few years ago. He's obviously too old for that at the age of 9, but not able to play baseball due to the vision disability. That's when I discovered Special Olympics Bowling League was starting in less than a month.

PERFECT!

Now whether this would be for him or for us, we will find out in the end. But we enrolled him. Signing up for the Special Olympics is easy, yet requires some paper work you must convince your dr you need as soon as possible. (along with the permission slips for medications and plan of care write up needed ASAP by the school nurse) which NEITHER is an easy task. I am thankful they didn't require us to be seen, they could just go by last dr visit for vitals.

So Skyler was going to be on the team. He was going to bowl! Which is great cause we had his 9th birthday party at the bowling alley! He LOVED it! As small as the kid is, he can sure pack a 7-10 lb ball around like nothin'.

First Day of Practice

We show up the bowling alley 10 min early. Seth and Skyler and I are all excited to see what the next 2 hrs bring us.

I walk in to find chaos, pure chaos. I find the gals who are in charge and plan to get Skyler signed in and set up in his lane. With his anxiousness he begins the questions of where are we? to what are we gonna do? followed by can I play when we get home? Between him and little Seth overwhelmed with everything around him I hear the lady tell me "sorry we don't have his paperwork" as I try and explain to her that I dropped it off at her work and she probably should look one more time because the time bomb holding on to my left hand was about to go off any moment....3, 2, 1 BOOOOM!

It's over.

We now have completely melted down. As I am trying to dry tears and calm voices we are shuffled off to the side so people can continue to pay and begin to play.

I'm also realising that I have just been handed a very large dose of reality. This really isn't what I had in visioned and I know absolutely no one. I want to explain something. I have been exposed to alot of different situations and ranges of disability. In fact I find comfort in talking to other parents while waiting for clinic appts at Children's about their child's strengths and difficulty's as it helps ME better understand my child and our situations as much as becoming more versed and understanding of others around me. Having a child of our own who has so much going on medically, behaviorally and cognitivly I'ld like to say I am very accepting and understanding And what I thought desensitized.

This wasnt the case in room full of developmentally disabled adults. Its not fair to judge, and I promise with all my heart I wasn't. As I look around I see worn down, tired and ragged moms. Me, in 10-15 years from now. I see Skyler. I see a future that is already been paved and is waiting us. This is not what I had planned. But this IS my life. How have I never until now, been exposed to what our future will be like as parents of a child like Skyler. In my eyes, he is perfect, funny, adorable and witty smart in many many ways. And as a mother you never really look at your child is different. And we try very hard to make sure Skyler has all opportunities like other boys and girls. Yes he is different but he is capable. (I'm blaming Denial here)

Maybe its cause I knew no one and they were so unorganized that my first impression was tarnished with the Special Olympics of Skagit County. I was done. This wasn't for us, Skyler is too young. We aren't "those" people. IM not ready yet? And they cant even keep paperwork in order. I was just going to find something else.

Something tho, made me email the director on Tuesday. I asked if she had found Skyler's paper work. She quickly responded yes and that we were set to participate on Thursday. I battled with myself. Do I take him. Do I "quit" and hide? No-I couldn't do that. Its reality I am afraid of. Its truth. I need to get out of denial and embrace our son and know that its OK and a here and now thing.

Off to bowling we went. Skyler was VERY excited. And today it didn't seem so bad walking into a room full of- well people. I saw smiles and warm greetings. I think Skyler got 10 high fives as he joined the group. Instant acceptance.

What was I afraid of?

To make things better, I turned around and alas! A familiar face. I had met a lady who has a 20 year old son who is blind and has similar developmental delays and behavioral tendencies like Skyler. We have swapped bits of our stories but never really talked. She and her son P were there. I instantly felt relief. I wasn't alone anymore. We sat and shared more stories (I was taking mental notes because she has got 10 years experience on me!!) I thanked her for coming. Our boys got along great...2 kids obsessed with Ipads! uh oh.

Skyler made many friends today.

He has a tendency to wrap himself around every persons heart he meets. Hes amazing.

One thing I learned today-

Take a moment and smell the flowers. Its not that bad.

I was absolutely terrified last week. I felt out of place, overwhelmed by reality

and that this just wasn't for us. When in fact, its exactly where we needed to be.

I may have learned a lot in the past 9 years. But I have so much more to learn.

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!

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)