Tailspin Begins

I accidentally posted this in my other blog...... here was the start of our vacation. I will try and update about the actual vacation later today or tomorrow.

Ok who told Danny we were going to leave for vacation?? On Wednesday Danny woke up at 2:30 and just wasn't himself. By the time his nurse came into work he was spastic, high heart rate, fever, but he was all smiles. I think he just wanted to get out of getting his flu shot that aftenoon. Well it worked no shot for him, just Ms Avrianna got hers. I got mine last week so I'm good. By the afternoon Danny stared "dumping". So the theory is that his system just wasn't tolerating the supplemental protein we started giving him. Needless to say I stopped the protein until we come back from our vacation and then well address this issue. He doesn't need to be having multiple BM's a day while on vacation, NO ONE would appreciate that. Unfortuanelty Thursday morning wasn't any better and once again Danny was up by 2:20am. Can you say running on empty - Yes I was! But i neede to pack on. I was doing pretty good with getting the RV ready when Danny felt the need to throw me yet again another vacation curve ball. What is it with this kid ! I know Like I ALWAYS say .... It's all about Danny Osero. LOL. During his weekly routine trache change the day was thrown in an up roar. His old trache was pulled out, his site was cleaned, but the new trache wouldnt go back in. Seriously!!! Thankfully we had some of his older versions ( the uncuffed) traches around and that one went in. Now it's 10:30am the day we are to leave for FL at 3:30pm. So I had 5 hours, NO Pressure at all! I swear he is shaving years off my life. So now he has a teache in BUT not the one that works on Puff. Now what?!? I did the "good" thing and called Down to CHOW, after talking with Dr Kasper. They wanted me to bring him down so the ENT could check him out and get his trache in -- did I mention we were leaving at 3:30 for Florida?? I packed As much as I could and headed down south to CHOW which is 1.5 hours one way South of my house *sigh*. The ENT was able to get the trache in with minimal trauma - YAY- Dr Martin Rocks!! While we were there the dic suctioned out the goo in Danny's right eat too. Once i Realized knew we were still going on vacation (thank god, As I didn't want to have to tell Avrianna we weren't going to Harry Potter), I called Dan to come pick Danny n I up in Milwaukee. So Danny n I hung out until the RV with the car
Dolly came. I figured I would try to do a few other things while in CHOW seeing I had time to burn. Danny got sized and is sporting a new AMT Gtube button plus I was able To track down someone to give Danny a flu shot. Yahoo - what a tune
Up he got .... Without it being planned :). We were able to stop by and visit our good friend Ryan who is inpatient there. We hope he feels better and can go home soon
We are on the road and doing well with time. Thanks for checking on us. I will update later. It's my turn to drive :) sorry if there is alot of errors here -

I Know Different

This is beautiful! It was written by Tricia Proefrock & I wanted to share...

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

The First Picture of my sweet Lil Man, Danny ~ from THAT moment I touched his hand for the first time I KNEW we were going to Different, and that we'd have a bond unlike no other. To my HERO ~ Mommy Loves that you "Know Different"

Thank You Tricia Proefrock for writing this ~ It's AMAZING!

Adjusting

We are getting back to a new normal and starting a routine around here. It hasn't been the easiest road we've been on, but we've also been on worse. Now that things have settled down, I can start to reflect on all the change and newness around here. I'm not going to lie the vent isn't an easy step to take, BUT it's also comforting to know that we have a way to make Danny more comfortable and hopefully less ill. We've needed to do some tweaking with the settings on the vent and Danny needed to change to a cuffed trache, but I think he's now in a good place (for the moment) with Puff. The alarms have lessened and his tolerance has improved. Lil Man's biggest hurdle is getting used to the new cuffed trache. It must "tickle" his trachea more as he is doing alot more coughing and the last trache change was not the best experience. I can only hope it gets easier on him as I hate to watch him struggle.

Here's Lil Man with all the tubing and baggage on. We had to "travel" with him....just into the hospital for a blood gas level one morning, but it was with all the "business' on. That was a hard to swallow trip.......everyone staring even more then ever. Wondering if people even saw Danny or just all the equipment he was hooked up to :(

Well I see him, all of him, those cheeks, his stunning blue eyes, that thick hair, and his AMAZING Sassy attitude ;0) ~ Boy do I LOVE this Lil Man!!

I'm going to have to put the wheelie bars back on with ALL this on there. He's getting alil heavy in the rear ~ LOL.

We've started to train a new nurse this week. I think she is going to be a good fit. She seems to be very educated, hands on, and caring. Time will tell if she's comfortable with my Sassy Lil Man :)