Sunday, January 1, 2017

Growing UP ~ Hello TEENAGE Years

13 years old!  OH MY WORD ~ A milestone I didn't know if I'd see.  What a MIRACLE to have 13 years....when from the beginning we were told "it would be a miracle IF he makes it to his FIRST birthday".  Well TAKE THAT ~ Danny is 13 years old!!!

 Danny's first photo ~ just minutes after his delivery.....fighting the ultimate fight to stay, after being brought back to life.

What a handsome young man he's become!!

On his birthday we showered him with the cards he received .....Grand total of 54!!  WOW ~ Thank you for taking the time to send him some birthday cheer.  We opened and read each and every one to him.  I'm amazed that out of all those cards there wasn't any duplicates!!
For a birthday treat we took Danny to go see the Movie "Sing" at the theater.


I can't say that being 12 was easy on Danny.  What a rough year with many illnesses, and a few of them were VERY SCARY.   In addition to Danny being pretty sick most of last year we not only lost an amazing nurse that we had for 5 years, but pretty much all of Danny's medical team has parted ways. Some of the physicians I wasn't to upset/disappointed to see them go, but others WOW it was a shock and it still hurts.  We won't be the same that is for sure, but I know we will be ok.  I am in the process of building a new team....literally from the ground up. Maybe it's a blessing in disguise, but right now I'm still riding on auto pilot and in shock.
Even though Danny was 12 I tend to want to think that he was actually on his 13 year of life which means all the bad 13 crap will be behind us. So being 13 will be a breeze, right?  Just let me reel in that imagination for alil while.  I know the older and bigger he gets the harder things could be on him, but he's made it this far and we'll keeping doing what HE does best...Proving them Wrong!!
I am just so proud of my young HERO!  All that has been stacked against him, all that he has endured ~ and he is still HERE.  He still manages to put a smile on his face and he still continues to fight.
Despite all the hurdles and set backs last year Danny still had some pretty amazing highlights and adventures ~ Movies, Dive meets, Emma's wedding,  Cross country RV trip to CA (San Diego Zoo, NHRA museum, Vegas, Tanked, Kounts Kustom Cars, Grand Canyon), boating, swim parties, and hanging around friends and family........
Fun photos through Danny's 12th year ~
Kounts Kustom Cars
 San Diego Zoo
 "Tanked"

 Bellagio
 In the casino

 Grand Canyon
 SN swim party
 Took Nurses out to dinner
 Emma's Wedding

 Fireman's picnic

 Farmer Market
 Halloween
 Cheering on & Hangin out with Av at her meet
 Great video of Av n Danny on the news
 Up North at the Shack for Thanksgiving
 13th Bday party Fun


 Christmas Eve celebrating with Great Grandpa & Ma at their new place
 Nanny and her Grandbabes ~ they're not so small anymore
Just SMILE!!!!

Here's to a wonderful year of memories! 

I hope you all had a safe and Happy New Year!  May 2017 bring you and your family great things.

Thursday, December 22, 2016

Struggle

Today is my day ~ to drop my mask, stop the act, unload the feelings which are all things I work very hard at keeping to myself.  I allow myself THIS DAY to feel the struggle, play the what if's, wonder what the dream might have been.  The struggle and fight is real, it hurts, and it's lonely.  Many a Mom or Dad that has a child with special needs can understand and for that reason I write ~ I know I'm NOT ALONE.  Even though on the outside I look as if my act is put together, I'm a rock, a "Supermom" if you will, but in the inside I'm a mess and there is a dark spot that I tuck away and don't let out very often ~ the hurt, anger, despair, guilt, helplessness and sadness that I have.
13yrs ago today was the last day my son was not hurting, he was not struggling, he was safe and healthy wrapped up perfectly getting ready to make his debut into this world.  My job was to protect him.......and I failed him.  His first few moments I can't even imagine as they were unfathomable and painful, so much so that the injuries left him fighting for his life and struggling to live EACH AND EVERY DAY of his life there after .  I trusted the medical team and I will forever be sorry and feel extreme guilt that I didn't do my job to protect him from harm.
Today Dec 22nd 13 yrs ago I was a different person, life was different, and there was NO WAY I could have imagined or prepared myself for how my life would be FOREVER CHANGED.  Today I struggle with the false hope, the broken dreams and what life could have been for my son from big to the small things.   Just as the naive expecting mother wondered...... but now knowing I will never find the answers
~ I wonder what his voice would sound like and morn the lost words "I LOVE YOU"
~ I wonder what his personality would be like and cry for the empty embrace of a hug
~ I wonder what kind of relationship he would have with his sister and feel helpless for her ongoing worry that she has for him
~ I wonder what sport he'd be in
~ I'm saddended for the lost friendships he will never have
~ What would his favorite food be
~ Does he even like firetrucks
~ Did he feel the hurt when he was born
~ Does he KNOW how proud I am of him and how much I LOVE HIM
~ Can he ever forgive me when I find it so hard to forgive myself
The list goes on and on and on ~

Hug your loved ones and don't take anything for granted....even the smallest things as for some of us we struggle with what will never be.

Tomorrow is a new day and a day to celebrate a BIG MILESTONE of 13 years ~ a TEENAGER!!  WOW ~ Turning 13,  for a boy with a traumatic start and a grim outlook of "It will be a miracle if he makes it to his first birthday".  Tomorrow and the next 364 days I will celebrate everything he is and everything he has become, I will continue to fight his fight, Be his voice, and enjoy each and every moment I have with him  ~ He's my MIRACLE and I'm so proud he's MY SON!

Today just hurts 

Thursday, December 15, 2016

Thankful

The State HIGH is now winding down.  Wow ~ what a ride!  The Local NBC26 news station did an awesome story on Av and Danny.  TEARS!!  I put together all the clips and made it one video.  I hope you enjoy it.


In addition to the TV station and multiple new paper article recognitions ~
 ~ Av went to the Neenah Board of Education Meeting where they talked to her about her State Championship
~ Lettered in Dive
~ Received a trophy as MVP
~There is some talk about her being Diver of the Year through WISCA, but that is just rumor until the banquet in May...so stay tuned.
How cool her name is on the wall for years to come!!

What an exciting year for her.  We are so proud!  Even with her crazy schedule she academically is at a 4.0 gpa.  You GO Girl!!
Now that she has alil more time, Av has been preforming at some of the Neenah basketball games in the pep band.  They are really pretty good and fun to watch.

Can you believe they are signing up for next year 10th grade sophomore classes this week.  Man, I knew it was going to go bye fast...but this is ridiculous!!  Av continues to dive through the club, but hasn't been as hard core on the boards like when in season.  She still has significant pain issues with her knees so she is working in the weight room on strengthening muscles in her legs and core.   We went to the 4th sports medicine doctor to see if there was any direction/help we could get from them, but each and every one said Av should just quit diving.  UM........thanks for nothing!  Would you tell an Olympian to just quit?!?  I'm looking for help to safely and effectively get her better while she continues to do the sport she LOVES.  Guess we are just going to have to wing it.  Her next meet is with the club and it's in Brown Deer Jan 15th.  We found out the venues for Zones, Sectionals, and Nationals are in the adjoining states so that's nice we don't have to travel across the US (now lets hope Av doesn't break anything this year).
This year the hunting season was cut short due to the dive banquet, but don't freight Av once again shot a deer.  This biggest one yet for her at 6 points and the only deer harvested off the hunting land out of 15 guys for the 2016 Hunt.
Av, Danny and myself drove back up North to the hunting "shack" for Thanksgiving.  
On the gravel (snow covered) country roads Av was doing some practicing being the wheel.  She's not too bad!!
 Danny had a rough morning before we left and he fell asleep around 10am. He didn't even know we drove the 2.5hrs up, were there 2hrs and drove the 2.5hrs back as he continued to sleep until the next day.  Needles to say he's not feeling well.
 The Newwood Hunting Shack

It's beginning to look a lot like Christmas around here ~ once again things took alil longer then I'd hoped to get the house ready, but it's done and not looking to shabby if I do say so myself. The
Grinch is stealing the lights once again.  The rest of the house has the dancing LED lights on it.  Those are so cool and so easy to set up!  That's my kind of decorating
 Have to get the dogs into the spirit
 Stringing in lites in the tree as my prelit tree is needing some additional help.  Looks like next year I will be redoing all the lites on it.
 Finished product!

The weather has been frightful around here with the temps dropping and the snow.  We had a storm last weekend and now tomorrow into Saturday Winter Storm Bailey is due to hit.  The temps are to get down to -30's with the wind chill and we are to get anywhere from 8-12" of snow.  Lots more fires in the fireplace and watching movies cuddled up on the couch as it's too cold for this sissy to go outside. 
Even the pups are gearing up for the cold weather.  Guess they are not going to be too happy with me on Monday seeing they are do to go to the groomers for hair cuts.
 She's so Sassy!
A girl and her dog
Check out these cute snowman I made for the family
 What doesn't everyone have a snowman in a wheelchair?
Our Christmas Card this year.  The photos were done by the wonderfully talented All Seasons Photography in New London.  She's does amazing photos..check her out
From Our family to your's ~

On the Danny front ~ I have to say he's been down and out for awhile. He's been in a serious state of hibernation with severe hypothermia and sleeping 21hrs out of the day.  I can't put my finger on it, but there is something we are missing!  I have heard the last few weeks that this could be his way of saying his done, he might be on his way out.  I call BULLSHIT!  He's not been feeling well that's a fact, but I feel that many of the medical team has given up on him and brushing him off.  I think he's just sick in tired of feeling sick and tired all the time.
We had a follow up with GI and I have to say what a waste of my time and a total mood buster.  Another one of those there is nothing more we can do and they feel he's too ill to even forgo any surgical intervention.  We/they are at a loss even though he is gaining weight on only 500 calories a day and on 2 different water pills 2 x day.
Despite his labs not showing a HUGE red flag as to what's going on, we put him on 3 antibiotics one IV, one aerosol, and one oral for 10 days (all at home).  I think he has improved since being on them, even though we really didn't know what we were trying to kill. 
At least we are seeing these beautiful blue eyes more often and he's been in a better mood
 And someone thinks it's HILARIOUS that he is being sassy.  I swear he's lucky he's so damn cute !!
So I will continue to fight!  I will fight for his health and happiness.  We are NOT at the end, I know it's very difficult reality for us but I believe in my heart we are not there.......yet.  Until I don't see the fight in his eyes and until he is "no longer" Danny I will fight with all I have and will all that I am.

We had Danny's 13 ~ YES 13!!  Birthday party this weekend.  I can't believe a teenager!!  Take that ~ it will be a miracle if he makes it to his first birthday.  Well I have a MIRACLE!!  We had his party here at the house with his SN family and our close friends.  Santa who is very near and dear to our heart blessed us with his appearance once again.  This man has not gone to family functions and has come in blizzards to be at everyone of Danny's parties.  He has only missed 2 yrs and both were because we cancelled the parties ~ one year due to being in the hospital and another year due to Danny being in a spica brace after hip surgery.  Other then that these 2 have a bond like no other!  Thank you Santa for making Danny's special day even more special for him and his friends.
PT Josh came and got him a Beardo hat....they now can match
 Mr Griffin and family
 Ms Paige and family
 Ms Quinnlan and Mom
 Ms Wyllow and family
 Mr Ryan and family ~ with his adorable niece....omg is she a doll!!
 Ms Aleana and 2 of her kids
 Mr Jacob and family
Mr Raymond and Mom
 
Mr Jeromy and Mom
 Briefly Mr Sleepy opened his eyes and I was able to get him to see Santa
 Group Photo!
 Danny and his nurses
 The one and ONLY ~ Super Danny!  It's my party and I'll sleep if I want too
Have you been Naughty or Nice ?
13yrs!  Here's to 13 more!!

Once again this year we are doing a Birthday Card Shower.  He loves for us to read to him so I will open all the cards he gets on his birthday.  Please send cards to 2686 Towerview Dr Neenah, WI  54956 Attn: Danny.  I can't wait to see how many he gets and where they are come from.  Right now he definitely has a fan base in SC!!

On a sadder note.....We had to say see you later to our wonderful Nurse Ms Keren.  She has been with us for 5 years so she is more then just a nurse or friend to us .... She's family.  She'll never be far away and will always be in our hearts.  We will miss her deeply, but we wish her all the best in what life brings her way.

I'm hanging in there.  I believe on on the beginning of a relapse as I have has significant fatigue, weakness, and pain n numbness.  I have called the neurologist and we I am going to go in for a head, neck and back MRI to see what's all brewing in there before we start any interventions.  I always have a harder time in the cold seasons.  I am completely opposite of a typical MSer as they tend to thrive in cold and suck in hot.....BRING ME FLORIDA!!  I will keep you posted on that.
I went a had my last cover up done at Wicked Ink ~ have I told you how amazing he is.  True artist ~ and I'm luck enough to have him right here in town.  Now this may be my last cover up, but not my last tattoo, lol
Dan is gearing up Big Red for the upcoming storm.  The plow is one, the snow blowers are ready and I'm sure he is ready to head somewhere warm too.  I think I've converted him into a fair weather guy as he used to LOVE this weather....now not so much.  
Dan, Av and I are rolling up our sleeves tonight and making our annual batch of Kringla.  Last nite Dan and I got a head start and did the Peanut Butter Blossoms.  I cheated this year and bought already made dough and icing from the local bakery Manderfields so I'm hoping to do some of those too.

I hope you have a Very Merry Christmas and A Happy New Year.  Happy Holidays from The Osero's