Saturday, September 10, 2016

Fall in FULL SWING

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
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 Yeap she's mine ~ LOL
Wait for it ~ She's a gem, isn't she ~ LOL
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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 London.....in 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 !! ~