Keepin ON

The first two days of the last semester of High School are now in the books! We are trying to savor every moment we have with Av while she's still at home as Emails, phone calls and schedules are in the works getting the college life started as a Hawkeye in Iowa.  She will be diving with the Team for a few weeks this summer so we will be starting the "moving" process probably in July.

Av got a jump start on her graduation present with a more dependable vehicle just before the holiday's as she was involved in a car accident on her way home from dive practice.  THANK GOD she was not seriously injured (just some bruises and soreness) BUT "Philip" (her car) didn't make it.  Once we returned from our winter break vacation we were able to find a great car for her to cruise around in.....
Look closely ~ whose in the back seat of a Squad. It was a LONG 45 minutes for the police officer to drop her off but once I saw her I could breath alil easy again.  They had to wait on the highway for the tow truck to pick up her car before leaving and they didn't want us on the highway to pick her up.

 Poor "Philip"

 Ouch!

 Meet "Al"

We ALL got our holiday baking on and made our traditional Kringla and Lefse' treats.  Av got the day started off right by getting me coffee

 Some amazing help this year :)

Not even this cutie was getting out of baking ~ We run a tight kitchen over here!!

Danny put on a dinner for his "girls".  We are so unbelievably lucky to have amazing nurses ~ we definitely wouldn't be where we are today without them

Another year and another visit from the BIG GUY.  What a spectacular relationship that was found by chance with these two..... 16yr together, YES I just said 16 (I still can't wrap my head around that Danny turned 16 Dec 23rd!)

 Santa has blessed us with a visit every year (missing only 2yrs due to Danny being in the hospital).....he has come to visit Danny during the busiest time of his year and we are forever indebted to his kind soul and spunky attitude.  Santa and Danny are two peas in a pod!!

We didn't have a birthday party this year for Danny, as we were supposed to be in Florida for the month of December, but MS came out to play and I had to once again pull an audible to change vacation plans.  Thankfully seeing we were home I was able to FINALLY get the permacath out of my chest.  The fistula is working great in my arm so the permacath was no longer needed......5 months of dealing with the catheter and IT'S OUT!!

I can finally get wet after 5 months!! I think I soaked in the shower till all the hot water was gone

 My new set up when I get my plasmapherisis.....works pretty good, now if I could just get the access holes to stop bleeding after wards this would be an easy process.  The artery hole really can leave a bloody mess and it happens very quickly, thankfully both times I was still in the hospital and not in the van or out n about. 

Unfortunately I've been put through the ringer in 2019 with so many MS issues and I'm still battling this MonSter with not a lot of relief.  I am still battling weakness and numbness in both of my legs and in my left arm/hand ~ I'm left handed so it's been a learning curve to say the least.  It's also a serious reality check with how fast and how unpredictable things can turn.  I will continue to fight with everything I have but I am changing gears and have looked into a new Neurologist that is closer to me with his specialty in MS.  Maybe a new set of eyes and ideas we'll have a new plan....or I'll have to sit down and think about all this.  Just like with Danny, I have to look at quality then quantity.  Am I doing this stuff TO ME or FOR ME?  Have I started to progress where I will not improve now with each treatment and do I have have to except this stage with the INCURABLE disease that I have.  Time will tell and we'll see what this new doctor has to say.  

After getting the all clear from getting the permacath out, a round of IV steroids, and a treatment of plasmapherisis for me......The Osero's plus one were loaded and headed south to the Sunshine state for the holidays

Av and Emily ~

 Let's Roll!!

 The traveling ICU room ~ it works out so well for Lil Man

Here we COME!!

 Unfortunately the ride down we hit a lot of traffic and back ups which added about 5 addl hours to our already LONG ride. 

 One of the accidents we sat on the interstate at stop for about 2 hours.  We found out later a lil girl had died, just devastating!!  Many walked up the exit to the gas stations and as you can see some stop by to talk with the local police dept

No matter the delay....we made it safe and sound.  PHEW!

Our home for the next 10 days ~ San Carlos RV Park just at the base of the bridge into Fort Myers Beach.  We've stayed in this park before and we really like the location ~ the girls just walked the mile across the bridge and they were hanging out at the beach

 Last time we were here we had manatee visits....this time we had a dolphin come right up to our dock twice

We definitely encountered our far share of rain this trip....the first 2 days was RAIN!!!! Then a hour here n there of random rain almost every day.  The weather was better than in WI so we really weren't too disappointed.

So we did some shopping

 We were lucky enough to see the Packers play on Monday night....

 We were amazed at the comments, people who tracked us down in the store and the cars that honked at us as we walked around in our Packer gear.......  Packers are very well liked in the area

 Santa finds us even on the road!

 Merry Christmas!

It was the Beach life during the day and night life fun for these two ...... 

Dan got a Practice tree to "play" with/ train for his races

 It was hours of fun and competition

 Dan and I walked Danny over the BIG ASS bridge to the beach one evening to meet the girls for dinner on the way home just as we were approaching the bridge ~ Random Rain fall!!!  NEVER a dull moment

 We had a few sad moments while on vacation......BUT nothing I couldn't handle. 

 Proof they can sit still and relax

 Then Av and I did a thing ~ We got memorial tattoo's for Grandma/pa Kohl seeing we lost both of them last year.  What a hard loss for our family

 She didn't flinch once ~

 Av's

 Mine

While Av, Emily and I were on the beach getting fresh ink.....these two got to get into some trouble together.

What a pair of clowns!!

 LOVE

 BACK to reality !!  We tried to NOT  get stuck in a bad storm at home BUT we listened to the weatherman and ended up getting stuck in it anyway.  We were pretty lucky on the way home and didn't hit any traffic delays.
At least it's pretty!! First thing was to plow out and snow blow before pulling the bus up to the house and start the unloading process

 Once home we found an alarming find....... Mr Gunner had a mass.  The once small lump that was found right before we left had grew like CRAZY!!

 Off to the vet the next day to have things looked at

 After evaluation it was found that Gunner has an aggressive cancerous tumor called Neurofibrosarcomas or Nerve Sheath Tumor
Read more at: https://wagwalking.com/condition/nerve-sheath-tumor

 Due to how quickly it grew and it's location we felt surgery isn't a good option for Mr Gunner as it would be VERY extensive and painful to only get a few extra weeks with him.  SO ..... we took him home and are spoiling him even more and loving up on him as much as possible. 

 Fast forward to now (3 more weeks later) and the tumor has really grown now.  He is acting ok with eating, drinking and still running around, but he's starting to slow down and be more uncomfortable. I'm devastated I don't get more time with this old soul (he'll be 10 on St Patty's day).  We've been through alot together and this handsome young man has been an amazing comfort dog to me.  I know his time here won't be long, I'll make him feel loved as long as I can and I hope he knows how missed he will be.

On a happier note we had our family holiday celebration once we got home!! 

Nanny with her grand and great grand babes

 Me, Mom, and my Sister Brenda

 My family

 Av and Tyler .....

Well the Packers got to play in the NFC Champion game......
Let's GO PACK, Game ON ~ Danny was READY!!  The Packer's were NOT and lost....pretty badly at that.  Maybe next year they will be able to pull it off.

Well Tara Rudy Photography did it once again!!  Check these Sneak Peaks OUT!  AMAZING!!  She captured what I was looking for....I can't wait to see the rest.  I'm impatiently waiting for her to return from her vacation so I can go back to the studio and see the rest.

 Av wondered if we looked alike?

What wonderful words Ms Tara said on her post with the pics ~ 

This is a reminder that we are all special. We are all different, and that’s okay.

This family is very special to me. Very special. They trusted me with their most important people.

I met this beautiful family when I photographed Av’s senior portraits… the amazing diver that you have seen me post about this season. 4-time state champion. Amazing and talented human.

A few days ago I finally got to meet her sibling, Danny. Danny is quite special you see. He was actually born sleeping, due to a birth injury. He was revived and wasn’t thought to be able to make it through the night, BUT HE DID! He is quite the miracle, because now he is sixteen! It has definitely been a rough life for him with over countless illnesses, disorders and over 50 surgeries to date, but he and his family’s love has prevailed.

This special human has taught many people, many things. He has taught his family strength that they didn’t know they had. They have learned that his smile can light up a room and make all bad thoughts just go away. As his sister has said, “some heroes wear capes, but her hero has a trache. A hero is somebody who is selfless, who is generous in spirit, who tries to give back as much as possible and help people. To her a hero is someone who saves people and who really deeply care.”

While Danny cannot communicate, he knows he is loved beyond measure. He can love everyone in the purest form possible. Unconditionally. He can be judged, but will never judge in return. He is absolutely perfect just the way he is.

Having disabilities or special needs doesn’t mean you are less of a human or deserve any less respect or love. Please don’t look at people with these things any less or differently. We all are living our own battles and victories. Stand stall, adapt and overcome and keep on keeping on.
We are all amazing.

Thank you Osero family for sharing your family with me. I love each and every one of you and think you’re freakin’ rockstars.

All my love,
Tara

Tears - thank you Tara, I knew you could get a photo of us that’s REAL
- Like he belongs and not just an addition - no one is the wiser of our disabilities and diagnosis to judge by showcasing a human and not just a disability this is how I see and love my family and now people can see what I see beyond the machine and tubes. He’s more then medical he’s MY SON. Thank you for allowing others to SEE Danny

Thanks for stopping by to check in on us.  We hope all is welll with you all!  We have some exciting stuff in the works so stay tuned.  Danny will be going to his first Prom next month, Av was nominated for the Wisconsin High School awards which is in May at Lambeau again, all of Av's senior fun and not to mention getting racing season started.  Both cars have a few details left and they will be ready to hit the tracks soon.