Friday, April 6, 2018

Keep Moving Forward

Well seeing I haven't updated this in over a month sit back relax and enjoy the ride, as its full of ups n downs and twists n turns.

The first weekend in March Av had a dive meet down at Northwestern College in the Chicago area.  She did amazing with placing 2nd for both the 1M and 3M events and it was her first time competing in the 16-18 age bracket.  She competed against about 30 girls on each event.  So proud of her !!  The next competition for her will be USA Diving Regions in Brown Deer the first weekend in May.
My graceful self happened to fall in the van....I was leaning in to get something towards the back and my arm gave out so I fell on the corner of the cooler with my thigh.  This beauty stayed with me for about a month!  
For the second year in a row Av has been nominated for winning this award and invited to the Gala at Lambeau field.  This years guest speaker is going to be Aaron Rodgers.  What a great honor and opportunity.

The next day instead of sweating on the pool deck we went to watch a LaCrosse game and FROZE!  From One extreme to the other ~ Brrrrrr!

The next evening I found myself at the ER to have more issues with high blood pressure/heart palpitations looked at.  After sitting there for over 4 hours to run some labs, have an EKG, and a chest xray they didn't find any reason for my symptoms so I was sent least my ticker is doing ok, that's what I was worried about.

Danny has been keeping me on my toes with some increased dysautonomic storms and seizure activity that landed him down in CHOW for a couple days for an EEG and observation. Danny's regular Neuro was out of the country so that is why we went down to CHOW on the guidance of his Palliative Care doctor after sending him videos of what Danny was doing. With us going on our Spring Break trip to FL in less then a week they thought it to be safer to do a Video EEG (VEEG) on him before we left. As with past experiences that inpatient visit down at CHOW was no different then before and a it was a complete nightmare with lack of concern and care that Danny received.  The only saving grace was that all the nurses this time around were fantastic.  It just amazes me how many mistakes are made with orders and how poor the communication is. It's a constant battle to get the proper care Danny requires.  I know he's complicated BUT come on when I give them all the info they need and things still don't get done properly or in a timely matter ... it's just baffling to me and its why I will never leave him alone to be cared for while in the hospital.  Every shift I find meds/cares that are wrong.  Then when Danny is struggling I'm all up in their business due to the lack of care and response time ~ it's just appalling, I wonder if they would be so lax to watch their child go through hours of storms, seizing, irritably before they did something about it. Guess I will have to bring ALL our home meds so I can give him his rescue meds when he needs them (follow our regular rescue plan that's been in place with our regular Neuro).
Unfortunately the older and bigger Danny is getting the more the storms and seizure progression get.  The VEEG that he had on while there has now started to show multiple 30 second seizures.  Many/most of his VEEG in the past haven't really shown seizure activity (don't get me wrong his EEG's are not normal and are spiking constantly, but they typically don't show full blown seizures) due to the theory that the activity stems from a deeper part of the brain and the activity isn't being picked up on the external EEG.  So that was pretty disheartening to find out the EEG is picking them up now, but after some med tweaking the seizures have subdued.  I was happy that the new activity that landed us down there in the first place presented itself while he was hooked up. Fortunately or Unfortunately .. all depends on how you look at it... they are not seizures, even though they look like it.  We can assume that the dysautonomia is progressing which is also very disheartening, but we'll take everything one day and a time and try to get things back in balance.  We added another med to his list to try and calm the storming down which worked alil too well at the starting dose they decided to try him at as he wouldn't wake up and his urine output slooooooowed way down.  After cutting his dose in half I thing we've found a good spot for him for the time being as his output is back to normal and we've been seeing more n more of his eyes.  
 All hooked up to the EEG wires
 When mom is bored....Danny tries out some Snapchat filters on St Patricks Day while in the hospital
 The EEG wires are off, but oh does that hair need some work!!

Then 2 days before we were to leave on our Spring Break Trip Lil Lacy started acting up again so we decided it would be best to bring her along with us to monitor and tweak her med doses instead of inconveniencing the house/dog sitter with that.  She was back to walking strange, staring at walls and yelping (SO VERY LOUD)
We tweaked her meds up and she did fantastic on the trip .... maybe it was her ploy to get out of the cold n snow and go with us to Florida :)
She had run of the RV
 Her first time on the sandy beach
 My supervisor while I laid out in the sun
 Danny had his pal
This year for Spring Break we went to Panama City Beach.  I was pretty nervous that it was going to be too busy and too much of a party place but we stayed on the south end in a RV park right outside the entrance to a State park so it was pretty low key with access across the street to the beach.  I don't think we'd go back there was nice, BUT I bet it was THE PLACE in it's day as it now seems more run down with empty lots and abandoned/closed places.  Guess we got spoiled with our Fort Myers/Sanibel beach.  The trip itself was pretty low key as I really didn't plan much for us to do....just to sit back and relax.  We did A LOT of that which was SO NICE!!  We typically are go go go on our trips so to just go with the flow was refreshing.  The day after we got there I had booked the kids to go on a dolphin swim/snorkel excursion.  They were alil disappointed that they didn't actually swim snorkel WITH the dolphins but they did see a bunch of them in the water near them.
With Captain Mike
Av holding a sea urchin

The weather  was nice with the temps 73-76 every day we were there BUT it was VERY windy most of the time. There were warnings all over with dangerous Riptide currents to stay on shore and not go in the water and the water temp was about 64 (BRRRRR) so there wasn't much swimming in the ocean/gulf but getting sun kissed by the rays was wonderful.
The campground map
 Panama City Beach Area Map
The kids has some freedom ~ we rented a scooter for a few hours one day for them to cruise around
 The last 3.5 days we rented a golf cart for them to get around in and carry their shopping finds.

Driving Ms Daisy

Our biggest decision for the day was where we were going to eat dinner at.  By the time I got myself, Danny and the dog done and ready for the day it was after 1 so our big together thing was dinner.
Beach view our first dinner at Spinnakers
 Awesome Bike at Wicked Wheel
Drinks were GREAT
Up at the Panama Park Pier Shopping center we had a blast at Dick's Last Resort being insulted by our waiter
 Another nice Beach view at Pineapple Willy's.....and the waiter just amazed/WOW'd us with his magic.
 I tried my first Crawdad.......hmmmmm.  I'm on the fence with this one.  It tasted more like liver to me then any shellfish. At this place I had some pretty fantastic all you can eat Crab legs....YUM
There was this HUGE fish tank in the Salt Water restaurant where we went for our last dinner while there. 
What would a beach trip be without some beach photos ?

 Relaxing outside watching the race
 Chilling out
 I'll hold on to the that for you dad!!
 Danny's face on our way you can see he was just as impressed at the rest of us were with leaving the sunshine state to head back to WI with a snow storm on it's way.
 We ran into a preview of what was to come when we got home already while we were in Illinios.  We had to finally get of the interstate when our windshield completely froze over due to our crappy wipers and the roads were so snow covered we could no longer see the road even as we traveled at a snail pace of 25 mph on the interstate.  The cars in the ditches were also a warning to GET OFF the road
 When we got up in the am the snow had subsided, the sun was trying to peak out from the clouds but the fog was lingering.
The real stresses of the trip happened to be the NEW RV that we JUST GOT. On the ride home from picking it from the dealer last month Dan and I had already noticed significant issues with it.  It's becoming a DO NOT JUDGE THE BOOK BY IT'S COVER as Unfortunately the list continues to grow.  It's so disappointing, inconvenient, embarrassing, and with the latest issues it has now become unsafe.  I'm so angry!!  The Quality, Pride, and workmanship that was put forth in this "Luxury" RV is .....just down right disgraceful.  I have been in contact with the Dealer we purchased it from (whom we were lied to about the condition and the use of the RV prior to us buying it) and the Manufacture as this is the second P.O.S we have gotten that was built from them.  The RV does look awesome and will work AMAZING for Danny with his needs BUT I don't know how much more we have to or will endure.  Thankfully as of now both companies are accepting and taking care of what needs to be replaced/repaired BUT I'm not getting the warm fuzzy that issues are not to going continue to arise.  So many of the issues could have been handled before we even took ownership of the RV and we would haven't been the wiser IF they did a proper inspection and detail.  Then the other has come to the point where I am not surprised anymore at WHAT NEXT is going to need repair.  I hesitated to go public with it as I said it's so frustrating and well damn embarrassing to spend that kind of money and have to deal with all of this, but I'm an open book and things don't run as smoothly as I'd like it to. RV's in general are known for there issues and repairs BUT a 2+ page after our first voyage is just NONSENSE!! Some of the issues are very petty but things we should NOT have had to deal with while others are not safe ~ wasn't cleaned inside or out, wipers don't work well, toilet stopped working, washing machine doesn't work, drawers broke, tables scratched, multiple paint chip on the body, shower trim torn, tv scratched, oil leak, antifreeze leak, ABS lite, doors squeak, headlights not installed properly, hole drilled in shower drain, hole cut in metal floor undercarriage, the slideout shaft snapped completely in half leaving stay unlocked driving down the road, and I'm sure I'm missing more off of the list.  Sad Sad state in today's quality and workmanship.  It is at the repair shop now, so we'll see if they find anything more once they dig into the repairs.  Stay tuned on that!!

I had a Neuro follow up yesterday.  I JUST LOVE her....too bad I have to travel an hour and half away to have a good Neuro.  We went over my recent MRI and yes my MRI was the best it has been since the last 9 years..WOW I can't believe it's been 9 years since my diagnosis.  There are NO new or active lesions in my brain or spinal cord.  The ones that I have had are still there but stable.  Unfortunately my symptoms are still giving me grief so I am going to go off my only 2 meds that I am on and see what happens.  The side effects of the meds mock MS symptoms so either they will get worse or better by going off the meds which will mostly let us know if my increased symptoms are just do to the side effects of the med or if there is possibly some new development in my MS.  From what I understand it's a type of change that happens in some MS patients and they are called neurodegeneration.  The other/normal abnormalities in MS can clearly be seen on an MRI which are demyelination and inflammatory markers.  Most MS patients have a combination of both processes happening at the same time.  Neurodegeneration cannot be seen by the current techniques so Time will tell!  I have to say I was hoping for her to say that I could go off the meds, but now that she has I am hesitant.  What if my MS flares up again and I can't get it to stop? Good thing (I guess) is that this med stays in my system for up to 6 the level will start to decline instead of it just being totally out of my system right away.  The Dr feels in the next 3 months I should have a good idea of whats going on and if I should restart the med or continue to not take it.  I also found out that with my families HIGH history in cancer and with me having skin cancer while on a MS med the Aubagio that I had been taking is the only option out there for a disease modifying drug as all of the MS drugs will not accept me because they drop the immune system so much that I have a VERY HIGH chance of having cancer due to just being on the med.  Not sure why this one allows me to take it when the others will not, but .... Another great reason to be off the med and try this naturally.  I didn't take the meds last nite so here goes nothing....We'll see what comes of this.  It's never an easy road but we just have to keep moving forward.

Dan has the race cars back in the shop getting ready for race season to start next weekend.  I'm not too sure that they will hold to that schedule seeing we are still getting snow and the temps are way below normal still.  
The plans are finalizing with Blimpie Subs and we are projecting the construction to start sometime in May, it will be nice to have our retail building filled.  
Tomorrow we have a fun family road trip to attend one of Danny's nurses weddings which should be a nice time.

These pups just came from the groomers today ~ they are all ready for Spring....Now lets hope it get here before they need to be groomed again!

Thanks for stopping by and seeing what we've been up too!