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