Tuesday, April 24, 2012


These numbers are still an occurrence around here  ~  sigh
So the decision to cancel Danny's surgery that was to happen today has been made.  He just isn't holding his own yet.  I do believe he is getting better, BUT he's no where he needs to be to undergo a surgical procedure.  I would just be asking for trouble if we went ahead with it today.  The surgeons have been wonderful to work with and both of them agree that our primary goal is to get him better FIRST.  We have already worked out a new date for surgery, May 29th.  So I have a month to whip him into shape :)  I'm alil apprehensive with this date as we are due to leave for our week long vacation to DC on June 8th.  Cross your fingers that this surgery is in and out with no hitches so we can leave for our family vacation as planned.

Even though Danny wasn't feeling the greatest he still was able to participate in some activities.  Just look at those facial expressions.....I can help but laugh :)  Ms Bowers came out with some dirt and flowers for Danny to plant. This wasn't Danny's idea of a good project.  He hates his hands being dirty!!
Seriously.......this is disgusting!!

Sunday The Evan's family laid to rest their 8 yr old Lil Princess, Emily.  The family asked everyone to show their love n support by wearing PINK and/or Hello Kitty.  Even though we couldn't be THERE, we were in spirit, all of us!  You will be forever in our hearts Ms Emily.  Fly high!!
We found Hello Kitty slippers at the store on Sunday......so Yeap HAD to get them :)  Love you Emily!!

Yesterday I went to Wicked Ink in Neenah and got this AWESOME Tattoo.  I LOVE IT!!  Every time I look at it I smile :)  Thanks for the wonderful work Jake!!
The Red is for Dan and Avrianna's Blood disorder, Orange for my MS, and the Green is for Danny's birth brain injury CP
Everyone needs alil HOPE!!

This weekend we implemented a chore list for Ms Avrianna.  She was very excited to go shopping for the supplies, decorate, and participate in the ideas to make this happen.  We are ALL very optimistic with this as we have already seen wonderful results in the first few days.  I hope the trend continues!  I got many ideas off of Pinterest (yes I'm totally addicted) and after reading this ARTICLE in the paper this weekend, I felt we NEEDED to start.
To the left she has a bunch of chores to choose from, once completed it goes to the right.  She needs to have a minimum done by the end of the week to get an allowance (in addition to her daily "jobs" that she needs to do).  The Ransom box is for anything laying around, it goes in the box and she has to pay $ or perform a different task to get it back.

CONGRATS to Aleana and her family with the addition to Ms Haylin ~  She is a DOLL!!  We will miss her while she's on Maternity leave playing with her babes :)

Thursday, April 19, 2012


Lil Man has been battling ANOTHER Tracheitis.  This is becoming more then frustrating!  He seems to be getting them around every 6 weeks.  Just when he bounces back and gets on a good note ~ BAM ~ another one shows up.  Grrrrr!!!  As of Tuesday, Danny is still on for surgery to have his rods lengthened.   BUT yesterday we had another alarming surprise with Lil Man.....his BM was full of mucus n blood.  **SIGH**  Dr Kasper feels it's Colitis from the antibiotics treating the Tracheitis.  We collected a poo specimen and sent it to lab last night to make sure there isn't anything else brewing in there (aka C Diff) and stopped his antibiotics.  I'm not sure how that is going to fly.....I haven't seen an improvement respiratory wise from Danny yet and now we have to stop the abx.  Oh MY!  He still requires more oxygen time and vent time then normal ~ so we'll see if Tuesday is a go or not for surgery.  Yesterday Danny has a follow up with his neurologist about the new seizure med Onfi that we started about a month ago.  I think it was a good change, but it was a struggle in the beginning :(  Dr E still feels he is having more seizure then he should so we increased the dose ever so slightly and we'll see how that goes.   You can bet this increase is NOT going to improve his respiratory crud as it will bring on MORE secretions.  Oh BOY!!  Have it told you how much I dislike Spring time?!?!  Is it over with yet?!?!
Not only is this season hard around here for Danny, but this Month has proven to be difficult with the loss of friends.  It's bittersweet to connect with this amazing "family" online.  A family that gets you, is walking in the same shoes, one that is an instant connection.  You gain this bond you never thought was possible....especially when most of the time you have never met them in person.  I look forward EVERY day to sit down on my computer and have conversations with these people.  We can talk for hours about our "normal" daily  routines, dr visits, medical crap, and FEELINGS.  I have connected so many WONDERFUL people, I have a "family" I thought never existed.  But with this beautiful world comes the cold harsh reality when these sweet lil babes pass away.  It's a slap in the face that is filled with enormous heartache.  That in it's self is AMAZING when you think about it........a bond n connection that you have with a family and child you haven't even met in person can have such an impact.  I am truly blessed to be friends with The Evan's family and I'm am deeply crushed to say that their sweet Emily has passed away.  She was a fighter and inspiration....Emily will be missed dearly.  
Please wear pink on Sunday to celebrate and honor such an amazing lil girl!!

Monday, April 9, 2012

Spring Break n Easter

One of our Art Projects we did this Spring Break :)  Love IT!!
 Avrianna's turn to color eggs.........then we did a sugar water floss egg off of a balloon.  Turned out cool, but boy what a sticky mess that was.

We had Easter dinner at our house this year.  It was a smaller group as many of the family are in Florida.  We had my Mom n Chuck, my step brother Mike with his 2 kids (I got my baby fix as he had his 9 wk old son with, YAY), and my Aunt Bonnie n Tom.  The food was great and the company was wonderful!!  

My Two Favorite Peeps!!
Happy Easter!
As I stated before .... Easter is NOT Danny's holiday.  So in true Danny form he was border line to go into the ER.  His breathing was labored, heart rate was getting higher n higher, and his Oxygen levels were less to desired, and his snot was Easter colors :(  
 Thankfully he held his own and we managed to hang out at home, but his was attached to Puff :(

 We were suppose to go to the Shedd Aquarium on Thursday, but once again The Osero's made a spare of the moment decision and we stayed home to have fun around here.  Amazed at how we've been so easily swayed to NOT do something.  We usually are traveling all over and follow our plans out.  Even though it wasn't what we "planned" on doing we had a blast!!  Shopping at Justice, Build a Bear, out to eat, AND Mani n Pedi's.  Girls day out ~ it was wonderful Mommy n Me time :)

Tundra Lodge in Green Bay ~ spend the day in the water with friends :)

 Danny's new Lounge chair came in ~  How cool is this!

The pool was "brought up" for the season on Friday  ~ it's going to be a long pool season around here this year :). 
I hope you all had a safe and Happy Easter!  Thanks for checking on us ~