Monday, October 17, 2016

Boasting with Pride ~ She's Bulletproof

If the title didn't give it away .... this is going to be a brag post.  Seeing Av's Birthday is next week (she will be turning 14 on October 24) I find this fitting to show you my amazing daughter.

Doing it her way,  on her terms ~ Since DAY 1 !!  This girl never ceases to AMAZE me.
Deciding to come into this world 8 weeks premature and born with a blood disorder, severe anemia, jaundice and not knowing how to eat properly this lil spit fire has been defying odds and giving it all she has.  I remember seeing her fight for her life in an incubator wondering what the world had in store for her and after being told there was a very good possibility that she would be delayed socially and academically my anxiety and fear rose for what her future held.  Then terrifying me some more she found herself once again fighting for her life at the age of 6 when her body shut down and stopped reproducing red blood cells due to a virus when on a vacation in Florida.

Breaking the stereotype of being a home schooled child, she started the public school system at 2nd grade.  She proved the school system wrong that a girl her age could indeed be educated and socialized enough to be where she needed to be, not where they wanted her to be.  She didn't fit the age requirement as she was too young to be in 2nd grade, but they quickly found out she was up for the task if they just gave her the opportunity to shine.   Fast forward to today, she is still one of the youngest kids in 9th grade while in advanced classes and rocking it with straight A's and she has the most amazing bonds and friendships with her peers

Stepping on a diving board for the first time at age 9 in 4th grade, the Coach said that very first practice .... "She was a natural". She dives with the utmost grace and style.  She has 5 more meets to go but this small young Freshman is making a name for herself by ranking as the #1 diver out of all the High School divers.

She has a lot of adult worry with her brothers and mothers health in addition to our crazy family dynamics/support or lack there of and that breaks my heart.  But I hope she knows that her mother and father WILL ALWAYS have her back, support her and Love her.  The bond that she has with her brother is like none other and could never be replaced or replicated ~ those two have something "special".  Her brother who is her biggest fan will be with her forever and always cheering her on.

Her attributes are ~ She is her worst critic, She thrives for perfection, She's dedicated, She empathetic and She wears her heart on her sleeve....these also all could be her disadvantages at times.  Don't get me wrong she is still a growing teenager with an attitude, but I wouldn't want her any other way.

Dream BIG Baby Girl ~ You GOT THIS!
Love ~ Mom

Sunday, October 9, 2016

Dodged that ~

Nothing short of interesting here at the Osero's household lately.
Danny has had some significant highs n lows.  Finding out his system was in withdrawal do to decreasing one of his meds was just the beginning.  The new med regimen of adding Charolettes Web CBD oil and GABA gave us a curve ball.  Danny has been having an increase in Neuro's and seizures so off to see the doctor to get some labs done in hopes there was a red flag waving to show us the trigger to all this new activity.  Most everything came back normal, but we did find out Danny's cortisol levels were low. I started to do some more research and I found that the GABA is used to decrease cortisol levels so I quickly stopped the GABA in hopes Danny's level would improve.  The likelihood that the oral GABA crosses the blood brain barrier is very unlikely but we are talking about Danny's super capabilities here....I"ll just keep the GABA out just to be safe.  We had repeat levels done on Danny and found it is more likely that his levels are screwed up with his screwed up sleep patterns.  Normally a persons levels are high in the morning and/or under stress and lower in the evening, seeing Danny likes to start his mornings around 2-3 in the morning that could very well be the reason why his levels were not where they need to be during the appropriate times.  Unfortunately and thankfully during the first low findings Danny had a grand mal seizure what made it a good time to draw new labs (as his body was under stress) to make sure the cortisol level would increase, like it was suppose to do.  Thankfully it did indeed go up so that was reassuring.  So we still were on guard to find out the neuro/seizure trigger as 99.9% of the time there is a trigger to any new episodes.... bring on the intense game of Clue.  Anyone else want to play??  Friday there was an unusual finding on Danny's bottom .... a grape/marble size lump in the post perirectal cheek area.  Hmmmmmm ~ never seen or felt anything like that as of yet ~ so we monitored it and by the next morning it GREW into more of a walnut size.  We loaded up and headed over to the ER to have it checked out.  The ER doctor felt it was an abscess, UGH!!  Thankfully the on call surgeon took a look at it and he was able to take care of draining the abscess right at the bedside.  We had an option of taking him into the OR if we felt it was going to be too much for him to due it with just a local, but Danny did great and I'm so glad we didn't have to put him under anesthesia.  After 5.5 draining hours in the ER we headed to the pharmacy to get 2 different antibiotics (taking bets on how long we see C Diff again) and then to the comforts of our own beds.  Danny has been doing amazing the first 24 hours seeing he has a large open wound on his bottom that needs to stay clean, dry and repacked twice a day.  I'm so glad I don't have to be the one repacking his wound...I can hold his hand, be the comfort, and let the nurses be the "mean" ones.   We are to see the surgeon again on Tuesday for a follow up. I'm hoping the wound is healing enough that we will not need to repack it anymore....keep your fingers crossed.  My hope is this large uncomfortable abscess was the trigger to Danny's new episodes and once things turn the corner for healing that the episodes will stay away.  Even with Danny not being in the best of moods/health I was able to get a nice "school" photo of him for this year.
He's SO HANDSOME.....the shirt says it all!!
Danny got his new wheelchair as he was alil too wide for his last chair.  I was hoping he'd fit in it for awhile longer, but no such luck.  Here he is sporting his new KI mobility Focus CR 16" copper in color.

Av's also been on the mend from a nasty Sinus infection.  She is on her 2nd round of antibiotics and I'm hoping this will finally take care of this for her.  Despite her sinus infection she is rocking it at dive.  She currently is holding 1st place in the state of Wisconsin!  She's only a freshmen, OH MY ~  I'm over the top excited and proud of her.  She is even mentioned in a WISCA (Wisconsin Interscholastic Swim coaches Association) article, which is titled "Another Freshman state title winner?" and her part states ~
"And don't forget about Neenah's Av Osero. The latest phenom out of the Neenah diving factory, she currently leads all D1 divers with the highest score posted on the WISCA website (471.30). The state dive meet usually rewards experience -- only two divers have won state as freshmen in the past decade -- and this year's diving field is unusually deep, led by defending state champ Tatum Thompkins of Racine Case. But Neenah divers have a history of bringing home state titles, so Osero bears watching come November." 
How awesome is that!!  Boy is she making a name for herself.  So far she has placed 1st in most of the meets and has 2 2nd places under her dive cap for her freshmen year.  At the last Neenah home meet they had the divers swim a relay race, each diver swam a 50 Free.....that shit did her 50 in 27.34 seconds which is better then most of the swimmers on the team ~ WOW!
It's homecoming week !!  This week she will not only have the homecoming festivities during the week but also 3 dive meets to compete at too.  On Tuesday and Friday she will be competing at Oshkosh West and Saturday will be at West Bend.  After the meet on Saturday it's get home ASAP to get ready for her first Homecoming dance.  She will be having pictures and dinner here at the house with her friends before they go off to the dance.  It's going to be a party place around here for the rest of this month for Av with Homecoming next weekend, the following weekend is Av's bday party, and then we will be having a confirmation party for her on the 30th.  
She really NEEDS to slow down on this growing up business....can I hit pause for a bit?
Look at her!  My has she grown ~
Freshman school and diving photos
2016 Youth hunt was this weekend and it was Av's 4 year of hunting.  Every year she's harvested a deer.  This one is the biggest one yet ~ Way to go Av!!  Sporting the new DNR approved camo pink

 Not too much new with me.... other then some new ink!  Another great piece done by Jake at Wicked Ink.  He's currently working on a sketch to do my last cover up. I can't wait to see what he comes up with.
 The last few weeks of medical drama has started to take a toll as I've been more fatigued, I'm having more neuropathy pain in my legs n feet, and a headache has been popping up here n there.  I'm hoping that since Av n Danny are on the mend that I'll be able to relax and my system will calm down also.  I DO NOT need to have a relapse any time soon....too busy for MS right now.

Thanks for stopping by to check on us!  There is a chill in the air and the colors are changing ~ fall is here

Saturday, September 10, 2016


September is big month of celebrating ~ 

Sept 8th we celebrated our 15th wedding anniversary!!  Boy have we come along way ~ In good times and in bad, In sickness and in health ~ we've stuck it out and become stronger.  Here's to many more years and memories
Indy's Birthday was on the 2nd ~ we chose this day for her bday as it was the first shelters "Gotcha day" ~ we really don't know when her bday is seeing she is a rescue and not much info came with her.  I thought it's fitting for her bday to be the day of her new life.  We are so blessed to have her in our lives, except for when she plays with a black n white "kitty" in the woods and comes home smelling just YUCK!! 5 bathes later and she still smells of skunk ~ BLAH
Mr. Sully's Birthday was on the 8th ~ Another "Gotcha Day" Birthday we made up :)  What a sweetie!!
 Bring on the PUMPKIN flavors, the cooler temps, and the changing colors!!
 With the cooler temps coming we are getting ready for many fires in the fireplace ~ YAY!!
 In true Dan fashion he picks one of the hottest days (90+) for us to stack firewood ~ UGH
2016 Garden is ON!  I can't believe the amount of veggies we've already harvested out of there.  The tomatoes are keeping us busy now ~ canning batches of pasta sauce and tomato juice is going on once or twice a week ~ next is salsa.  My cupboards are filling FAST!!

Seeing Danny has been doing better, more alert and aware we went on a field trip to Ms Emma's house to see her new pup
Danny & Ms Chloe ~ what a beautiful St Bernard, that eats small children and dogs (lol).  She has a mean bark but seriously what a sweetie
 Mr Loki can fit in Danny's lap....for now.  The newest addition ~ who is a border collie
 Emma with her babes
 Ms Emma is not only our nurse BUT MORE IMPORTANTLY she has become our family.  LOVE the that these 2 have such an amazing bond.  "Sisters" forever!!
 Chloe the 120lbs lap dog ~ and you can't forget Mr Rumble the black lab/great dane who is always looking to be the center of attention.

There has been some amazing storms that have past through the last few days.......
Very cool shelf cloud
 Pitch black out and managed to catch the sky while it was lightening out

Dive season is a BLAST ~ but seriously a game changer in being BUSY!!  Monday's n Thursday's they have morning practice before school at 5:45am, every day is practice after school for 2 hours if there is no meet, then they have a team party once a week.  She's committed and LOVING IT!!
Tuesday's Appleton meet Av placed 1st and Friday's Appleton relay meet the Neenah dive girls took 1st !!  Tuesday the 13th the dive meet is our first home meet in Neenah, come on over and check them out
SO proud of her!  Dream Big
IN Appleton


 Yeap she's mine ~ LOL
Wait for it ~ She's a gem, isn't she ~ LOL
5:45am practice and they are smiling :)
Team building last nite ~ the girls came over after the meet to bedazzle the hot water tub and hang out

Fall weather means....bring on the football games!!
I was hoping to get the kids to a game this year, but unfortunately the tickets I had lined up didn't pan out.  I'm still working on it, I will get them there!
 Go Badgers
The smiles are back !! Danny has been awake more then not, more engaging, and aware of what's gone on. 
I couldn't have even imagined the amazing results I'm seeing in such a short amount of time since starting the CBC oil and GABA with Danny's neuro's, dysautonomia, alertness, sleeping patterns, and quick recovery if intervention is needed.  If this is a dream DO NOT PINCH me .... it's almost too good to be true.  I'm trying to be cautiously optimist, but so far everything is SO POSITIVE and I'm just giddy!!  The last 2 days we've seen NO EPISODES ~ NONE!!  Unheard of seeing we are decreasing a med that is suppose to be helping control the episodes and with the crazy weather (yes that sets him off too) so I would assume we would be seeing even more.  Even a small decrease will usually give Danny about 5 days of complete hell with withdrawal symptoms but since the CBC oil if he does have any reaction to the decrease it is short lived and it can be controlled with an extra dose of CBC, WOW!!  It's been over a year since Danny has slept through the nite and since being on the GABA the last 5 nites he's slept ALL NITE LONG!!  LIFE IS GOOD!!
I just can't believe it how awesome it is but I also Can't believe that there is such a negative outlook with medical marijuana not only in todays society but still in today's medical profession.  I can from my own experience and with Danny's tell you there IS medical benefits.  The more research I do the more I'm finding out what amazing things cannabis can do ~ I'm starting to wonder what it can't help.  I can't wait for the whole plant to be legal here in WI.  I don't wish chronic illness, chronic pain, or seizures on anyone, but if these politicians had some personal experience with them, the helpless feelings or road blocks that comes with them they might not make it so frickin hard for families to be able to try Cannabis.  It's such a hush hush subject, but I'm here to tell you it should NOT be ... I will shout it off the roof tops and advocate for the families that can't find their voice do to fear or being misinformed.   Families should not have to be separated from each other or move to another state just to find and use the help they so deserve.
Danny we're gonna change the world  ~  You and ME!! Pushing the limits, to the moon and back

Thursday, September 1, 2016

And just like that....... Summer is gone!

School had to end the summer fun, Boo... As the saying goes all good things must come to an end.  But I do foresee good things heading our way.
Av's first day of High School life ~ Be Safe, Be Kind, and Be Amazing!
This cutie would have been going to his first day of Middle School as a 7th grader.  Bittersweet 
I can't believe it.....Av is a Freshman in High School. She is very excited to FINALLY be at the High School.  I can't say I have the same enthusiasm as she does, lol.  Wishing I could keep her small and innocent for alil while longer.  It is exciting to watch her dive for the High School. She's already had her first dive meet last Saturday in New Berlin.  Looks to be a very good start to her first High School competition.  The dive season started Aug 9th and she was ready to get back to her diving routines after being off a few weeks due to her broken foot.  They have had many a fun time together as a team doing team building trips, and get together parties.
Rock climbing and zip lining at the New Zoo
 Working the Princess Mud Run in New the rain.  Then they did the course when the race was finished.  She came home straight to the shower as she was DIPPED in mud everywhere
 Team photos
The beginning of a great 4 years for these two
 Coach with his 4 "girls" (Divers)
 Neenah Girls Swim and Dive Team
After photos they had a triatholon ~
She swam 500 meters
 Biked 6 miles
 Then ran 1 mile
Done!!  Finished with a time of 49.31
 A snow cone to make it all worth it :)
 Her fan club (Dan, myself, Danny, Emma, and Keren) came to watch the first Dive Meet
Out of 12 girls Av placed 2nd on her first meet for High School ~ The HS dive meets are not broken down by age like the club is.  All HS from freshman to senior compete against each other.   Way to GO AV!

Not only is her foot healed but I believe we finally found a therapy that is giving her relief from the ongoing knee and shoulder pain she's been dealing with for over a year now.  Cupping then followed by laser treatment.  With cycling through many physical therapists and many different therapies I'm so happy we've found something that works as I was starting to wonder if there was anything out there that was going to help her.
 Olympic circles during the Olympics ~ Yes we were following the Olympics too
 Look at those bruises from the cups, but she says it really does make a difference in decreasing the pain she is feeling.  She says the bruising doesn't compare to the pain she's been having.
With weekly therapy, daily dive practice, and the team building projects we've been very busy.  There hasn't been too many down time days the last 3 weeks.

She learned not only to drive the zero turn lawn mower but she's also been driving my car and BIG RED up n down the driveway.  For all my neighbors that have been out and heard her sing her heart out while on the lawn mower.....I apologize ~ LOL

Danny has been challenging the last few weeks ~ Unfortunately he's gone full circle in regards to C diff.  We treated him with a fecal transplant (you didn't read that incorrectly) back in November which thankfully took care of it, but from the prepping of the colonoscopy and the fluid they overloaded him with he has been battling fluid in and around his right lung ever since.  If you remember, he even went sepsis on us back in the spring because of it.  Well do to all the antibiotics to help him try and keep the infections at bay that has given him ..... yeap you guessed it, C Diff again.  WTF!!  Also with all the extra fluid we had to up his water pill and that resulted in his potassium levels dropping to a dangerous level.  Thankfully that is easily fixed by added more potassium to his diet.
Waiting to have Xrays an labs done at Dr Kaspers office
He has ALL his nurses nervous and even on their day off Ms Keren surprises us at the clinic so she can see and hear what's going on
Unfortunately the xrays that were done here at home had shown significant fluid in his lungs and they wanted us to HIGH TAIL it to CHOW ASAP.  I didn't think he was as sick as they were telling me he was, but I knew something was up as he wasn't acting himself hence the Dr visit in the first place.  So I broke the rules and stayed home till the next morning and then talked with the Dr's down at CHOW to run more tests instead of just admitting him.  Thankfully and Unfortunately the xrays here at home were done improperly and the new excess fluid was just a shadow on the xrays due to their technique.  The new xrays done at CHOW showed his lung to be ok and we didn't have to get admitted.  Dodged that one!!!
Back in the van and heading home.... So I didn't have to miss the first day of school for Av and my date nite with Dan on Friday.  So glad I went with my Mommy gut or I would have went down there in a rush for nothing.  They have figured out the decrease in one of his meds put him withdrawal causing all his grief.
There was so fun days for Danny~
Poolside Bum
Even got some smiles here in there
Crusing the river
When it starts to rain....everyone scurries to get Danny and the vent covered up.  Dad takes one the team and lays over him so Danny doesn't get pelted with the rain drops
The clouds parted and we picked up Nanny to join us for a cruise
He really enjoys being on the water
Danny had gotten bigger which means.....the chair gets bigger too.  Danny and his new stroller ~ It's a 16" Convaid Rodeo.  I was hoping his wheelchair was going to last alil while longer, but we had to order a new one of those too.  We should have that within the month.
Amazing canopy where he can not look at the sun anymore
Awesome IV pole
We took Danny on his first real bike ride in his Cycletote bike trailer.

Ms Emma
And even Av got some ride time in with her Brother....
Can't forget the annual Town of Neenah's Fireman picnic ~ we got caught in the rain there too, but thankfully we took cover in the pavillion before getting soaked

EMMA's Wedding ~
We clean up pretty well
Check the awesome cowboy boot and converse sneakers I had made ~  Danny wanted to match the rest of the wedding party so he needed a pair of boots.  I found this lady at the farmers market and bought some cool hats from her.  I had joked about having boots n shoes made and she said she could do them for me.  She lives in Neenah also which made it so much easier for her to do some tweeking to make them work just right...but I think they turned out amazing.  I even had her do another pair of converse in black, grey and white.  Thanks Made By MEE (check out her FB page)!!

Look who runs over to give him a kiss before the ceremony ~  
What a beautiful place and the weather was wonderful
What a sweet surprise ~ LOVE YOU Emily and Marcus ~ Tears!!!
Nice Danny!!
Me taking pics of the group during their photo shoot
Here comes the Bride ~
Danny blessing Marcus' ring
"You may kiss the Bride"
Husband and Wife ~ Mr and Mrs Fenske
Smile ~
So Beautiful
Boys are bonding
SASSY!!  Aug 6th was not only the wedding but Brett Farve's Hall of Fame induction.  So we put a 4 on his shirt with tape...even though his shirt was purple, he was representing !!
Ms Sarah (our newest nurse) sat at our table too ~ she didn't mind his shirt
Instead of a big cake they had a bunch of cupcakes from Tamara's Cake Guru ~ YUM!!
First Dance
Dance like no one is watching ~ this makes my heart smile
She just can't stay away from her "boy"
The seizures stared to plague Danny during the dinner and just kept coming so around 8pm we called it a nite and went to the hotel. 
 With the increase in episodes we added meds in hopes to get them under control better, but that comes with a cost ... He's been snowed and was having more cardiac issues. So we decided to start removing some mess that we believe we're Not helping Danny. Unfortunately the decrease was too much for him and Danny started to go through withdrawal. Let me tell you, that's some scary stuff. After adding some of the med back he seems to be on the mend. Phew!! I don't wish that on anyone. He's more alert, not as agitated and all sats/numbers are returning back to his normal. 
 I'm excited to announce a new venture in Danny's care. As you all know I'm / We are an open book - That being said this blog is to educate and hopefully help anyone who maybe be in our shoes. I have researched and ordered "Charolette's Web" CBC oil along with GABA (gamma amniobutyric acid). CBC oil is legal in Wisconsin as its not the full medical marijuana because it doesn't have THC (which is labeled as the mind altering component to marijuana). CBC oil has been known to help aid in seizures, movement disorders and Dysautonomia all of which Danny has. GABA helps calm the brain from anxieties, stress, and medical issues. With these two new NATURAL supplements I'm hoping for some wonderful improvements with lil to no side effects, not only for Danny but I am going to try them also for my MS, fibro, neuropathy, and anxiety. Stay tuned !! ~