Tuesday, February 21, 2017

This too shall pass

Things at the Osero household are running smoothly.  Can't say that too often!  It's always hard to blog when things are going well.  Even the weather outside has been delightful the past few days.  Pretty much all the snow is gone with the unheard of 50+ degrees we've been having.  Today is suppose to reach temps of 60 and even higher tomorrow, BUT don't let this weather fool you...we do live in Wisconsin.  The snow is in the forecast this weekend or early next week.  I will soak up the sunshine and enjoy being spoiled for as long as Mother Nature allows.  I really need to look at relocating to somewhere that has mild weather like this....it's AMAZING!!  It's February 21st and the snow is gone, windows are open, I'm sitting on the Lido deck and LOVING EVERY MINUTE OF IT.  You can bet we'll get Danny outside and walk the dogs around the block a couple times before the weather turns to a winter wonderland once again.  At least it will be easier to leave for spring break when there is snow on the ground here as I would find it difficult to leave such beautiful weather here at home.
So when things are calm around here I always have this anxiety of when will shit hit the fan.  I know I should relax and enjoy it, but the ball always drops....it's just a matter of time.  I can only hope and pray that things around here continue to stay healthy, happy, and easy going for awhile longer.  Danny deserves some peace and enjoyment.  Last year was a hard year on him, so to see this year starting off well....it definitely warms my heart.

I guess there is good reason for my anxiety as.....

The BIGGEST news around here is we are in the process of switching over physicians.  I know I have hinted but until the official letter came out I didn't want to say anything.  Our security blanket, our life line, and the BEST Pediatrician EVER is leaving pediatrics and going to become a hospitalist at one of the local hospitals.  To say it was a blow is an understatement and it took me many a day to be able to talk about it without crying.  I truly believe with all my heart that Dr K is the reason we are in such a good place right now and why Danny is still with us.  Dr K has been there and been ALL IN for the last 14+ years with my family.  I don't know what I will do without his voice of reason, my calm when shit is hitting the fan, and his sense of humor.
I was referred to see Dr K when Av was born because he specialized in "special needs" seeing Av was premature and has a blood disorder.  I always joke with him that Av was just priming us for what Danny had in store.  This man embraced Danny when many specialists refused.  Dr K's compassion, kindness, knowledge, and determination deserves an OSCAR as he's more then a Pediatrician to us. He does a DAMN good job with maintaining ALL of Danny's specialty medical conditions (even better then most of the specialist do).
Dr K keeps saying "change is good" as I know that even though this is a great opportunity for him, it couldn't have been an easy decision for him. I wish him all the best in his new adventures....I KNOW he will be amazing, but with tears in my eyes....I can't help feeling sad.  14+ years ago it all started in the NICU with a fragile little girl and it's hard to believe everything he has done for my family in that time.  He's helped us through some very dark and hard times and we've shared the good wonderful times with him too.  See Dr K is more then just our kids pediatrician...he's become family.  I'm sure he will miss my gross photo texts, the SOS calls when he's on his sailboat or vacationing when Danny is very ill, and the multiple emails titled "Houston We Have a Problem".  Dr K understands Danny, he's read the Danny "manual", he thinks out side of the box, and he knows our family dynamics.
I found it hard when Av already transitioned last week to a family practitioner, but Danny.....that's going to be a new sense of crazy on me for while.  We have already picked a new Doctor for Danny, she has taken care of Danny when she worked as a hospitalist at CHOW FV and now she works as a pediatrician in the same building as Dr K so she's taken care of Danny a few times when Dr K was out.  I really like her and from what I hear she is excited to take Danny on....
It won't be the same.....
It will still be hard .....
This too shall pass!
We have a few more weeks with Dr K and I'm happy we are transitioning when things are "good" on the Danny front.  We are going to schedule a meeting with Us, Dr K and Dr Hill to get her caught up on Danny.  Another set of eyes and ideas could be a great tool....
Trying to stay positive.....
Change is good......
This too shall pass!
I will leave you will this amazing video that Emma sent me .... turn the volume up and listen ~ what do you here ?  In the begining he says "YUCK", after the second sneeze he says "SHEEEEIT" (whose teaching him bad words), and then at the end he says "YEAH".

Thursday, January 26, 2017

January 2017 is almost over with....I swear the older I'm getting to faster time is slipping by.  I want to hit pause for alil while to have more time.  Can you believe I just registered Av in to a drivers ed course?  HOLY SHIT!  Maybe hitting rewind is better....I'm not ready for all this.  The saying "No one told me the hardest part of being a parent will be letting them go", is SO TRUE.  I already have anxiety about Av leaving the house and going off into the real world.....hold on tight as this IS GOING TO BE a bumpy ride for this Mom.  It's exciting and alil bit scary that there are college scouts that have their eyes on Av already.  Let the fun begin!!  
Av had her first competition of the club season on the 15th.  She did great placing 1st in both the 1M and 3M boards.  She was very close to beating her personal best scores so this club season is off to a great start.  Her next meet will be at the Northwestern College in Skokie, IL (near Chicago) in March.  Then it's off to Iowa for Regionals in April, Zones will be here in WI, and Nationals will be held in Ohio the first 2 weeks in August.  Right after Nationals is completed it's back at it full force for the High School as the team starts practicing the second week in August.  This summer will be a somewhat different for Av as right now she isn't registered or interested in going to any camps.  Usually she has 2 if not 3 that she goes to....she might change her mind, but despite her not having any camps in the books her summer schedule is pretty full as it is. 
First semester of Freshman year is completed and Av did amazing!  She managed to get straight A's even with her crazy schedule, no study hall (tutorial), and with all advanced classes.  Now let's see what 2nd semester brings her way.  She has a culinary class this semester so I'm hopeful she'll get some great ideas to bring home and cook for us.  

I have to say Danny has been doing pretty well the last few weeks.  Knock on wood!  There has been a few hiccups here in there but nothing that hasn't been easily "fixed".  He continues to be more alert and we've seen more n more smiles.  Danny had such a rough 2016 it's nice to see 2017 starting off relatively low key for him.  He definitely deserves a nice long break from all the illness crap!  We did decrease another seizure med that didn't sit well with him this time around so I'm hoping that since we brought the dose back up his "episodes" will calm back down.  Next month Danny will be seeing his new Urologist along with getting another renal ultrasound to continue to watch the kidney stone and urinary retention.  I hope this year he can forgo any UTI's as last year he had 3 of them to fight off.  Noext Month Danny will also be getting his baclofen pump refilled and have his 6 month follow up visit with his Neurologist in Green Bay .  On the 17th we will go in for a surgery consult on having Danny's G-tube site revised.  It's the same site that was placed when Danny was 3 months old.  It's a beautiful site, BUT with how long his torso has grown the track is now at a diagonal and the G-tube is not sitting/sealing properly.  From what I gather having the same site for 13yrs is a wonderful feat as most have had it revised sooner then that.  I was just hoping he wouldn't have to ever have it redone seeing his back has now stopped growing do his rods/fusion.  We'll see what the surgeon has to say.  If surgery is in his future I will definitely be sweet talking some of the other specialist to see if we can piggy back some optional procedures ie ~ revise ear drum perf, clean out ears, dental cleaning, and bronc (scope to see how the granuloma is doing in this trachea).  That will not be an easy task to get so many different things done in one shot, so wish me luck.  I'll have to buy them all chocolates and Starbucks to butter them up ~ LOL
Unfortunately this handsome Packer fan didn't bring the Pack any good luck mojo on Sunday.  It was a good season for the Packer's but they must have forgotten they were playing in championship game as their heads were not in the game.  Next year!

 Hot tubing it when it's cold, snowing, and icy outside
 You so Funny!!!
 Danny took a stroll up and down the driveway to get some fresh air on one of our balmy 35 degree days.  Spring break can't come soon enough can it buddy?!?

The last couple days Dan has been running like a crazy man ~ With a heavy heart he had to go to his cousins funeral on Monday.  Never easy but when they are 38 yrs young it makes it even more difficult....Gone way too soon. Tuesday afternoon there was a barn fire that kept him and the fellow fire fighting team busy for 6hrs into the late evening, then to have a first responder call on his way home from the fire for a "regular" which ended in the gentleman's passing (so sad), 2 hrs later around 2am he was called back out to barn fire that rekindled, home and cleaned up for a Meeting with the City of Neenah yesterday morning,  to come home and plow out the house and businesses from the snow storm, then finally relaxing on the couch last nite to be called out on a semi on fire on the hwy.  Needless to say he slept well last nite!  
Never good to see Black smoke like that

Dan and I went to the Grand Opera house in Oshkosh was some friends to see the comedian Bill Engvall. I never knew that place was there....what a quaint historical theater house.  The show was great!  I haven't cried due to laughing that hard in a very long time.  When we left my ribs and cheeks hurt from all the laughing.  Last weekend Dan and I took Av to see the Broadway show "The Bodyguard" in Appleton at the PAC.  WOW ~ can those ladies sing, another great show!!  
The Grand Opera
 The PAC
I had my head, neck, and back MRI done to check how MS is doing.  I'm happy to report at this time my MS is stable!!  Kickin arse!!  Amazing how changing your diet and getting off almost all the pharmaceuticals have made me better.  Natural is the way!!  I found what works for me and I have to say I was so skeptic as all the stuff the physicians were trying were only making me worse so how was going the natural route going to work....Well for me it DOES WORK!  MS is not gone/cured ~ I just have MS under control (for the moment).  I still have lesions in my brain and spine but I do not have any new lesions and most of the ones I have are not active right now.  I can only hope that the medical teams and the government see how wonderful things can be with good nutrition (as many do not feel it can make a difference AND many do not see how the "food" that is being sold in stores are toxic to ones system).  It just amazes me how so many are first to grab that Magic pill to mask the symptoms of the problem vs rolling up your sleeves and trying to fix the problem.  Your health is all you have so try and make yourself healthier!!  You owe it to yourself and your family to be the best you can be in hopes to be on this earth alil longer.  It's FOOD ~ the reactions I get from people about what I eat and stay away from is ...... ALARMING as I hear time and time again "I could never do that" or "I couldn't live without eat/drinking that"!  Now I am not one that doesn't treat myself here n there....but it should stay that way a treat.  Stay away from soda, processed food, foods high sugar.  The addiction to processed and refined sugar foods is out of control...no wonder why more cancer, auto immune diseases and just over decline in health is at an all time high (yes they are linked).  There will be no change if you can't find the change in you.  Start small BUT aim HIGH!  You are worth it!!
My new obsession is Lularoe leggings and shirts......they are so comfy, soft, and the patterns are so fun.  This Saturday I'm having an online party so if you're interested in ordering from the comforts of you our home please stop by my FB page Saturday for the shopping link, the hours will be from 10-10.
Thanks for stopping by to check on us.  I hope this finds you well.  

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

 In the casino

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

 Fireman's picnic

 Farmer Market
 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.