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 !! ~

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