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