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