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