Wednesday, February 7, 2018

Well Why NOT.......

I hope this finds everyone well.  The flu is in HIGH gear and thankfully we have escaped it....for now. 
Av has had a nasty cough and congestion but no fever or aches, she's had this for about a week now and is improving daily.  Good thing she is starting to feel better as the Winterfest Dance is this weekend. 
Av asked Jaden to the dance ~
It was fun helping her with the sign ~ 
Av had a dive meet at Brown Deer last month and she placed 3rd in both the 1M and 3M event. She did very well with her first meet competing in the 16-18 age bracket.  
Visibility 45 mins of a 1.25 hour trip was "Spectacular"
Av and her friends from Chicago. Competitors on the boards but what a great friendship they have made through the years diving together. 
Poor Jaden toughed it out on the bench with me the whole day...He's her biggest fan!
She will have one more meet the first weekend in March at Northwestern College in the Chicago area before she competes dive Regionals back here in Brown Deer WI. Which is only 2 meets to prepare before the Big competitions starts, but she's got this.

Danny has been doing pretty well.  I finally ordered his new bed and it should be here next week.  So exciting!! I also got him a alternating air pressure mattress overlay to help with keeping the bed sores away, we've been pretty blessed to have minimal skin break down issues thus far and I'd like to keep it that way.  Good thing about this overlay is it's small enough that it can come with us on the RV too.
Here he is sporting his new Maryland hat to antagonize his sister but show his support to Jaden.  Let the games BEGIN!!
 We are going to be going in patient next week for a 24hr stay to have Danny transition onto the new Astral vent.  We had to delay this a month due to unforeseen paperwork issues.  I'm so glad everything is taken care of and we can proceed to this new Vent!! Unfortunately this is during the peak of the flu around here so he will be covered with a face mask, covered from head to toe, and I will be very vocal about spreading any kind of germs with anyone that comes in his room.  I'm glad it will only be a day in the hospital but alot can happen in that short amount of time. 
Danny has been having a few break through seizures/episodes the last few days.  I really can't pin point as to why so I'm just going to blame the super moon and hope things resolve as quickly as they showed up.
We saw Danny's new GI doctor here in the valley and I really like him.  He was very informative and he actually listened to my concerns.  Once the vent change over is done and there are no hiccups or issues with that we are going to start changing some things around with Danny's diet.  We FINALLY have Danny at a weight that is good for him and now we have to hang tight so he doesn't lose much more.  We need to start to change things around food wise for him with his bone density and gut issues and he needs to be on a more adult version of formula, BUT this might not be an easy change.  I believe there might be only 2 other formulas that he could tolerate (he is sensitive to dairy, soy, whey and has a fluid (42oz a day) and calorie (480 calories a day) restriction).  There are many factors with this change so I hope and pray things won't get too off while attempting to improve things.  I'm not sure if my want to bring back Real food into his diet will happen as we discussed how sensitive Danny is and when he was on real food that is when his C Diff was crazy out of control.  I've been told that real food can do that to some as it's not as "clean" as Danny's gut is used too which could have been a good source as to why the cdiff wasn't going away.  No real food blend has been introduced since we had the fecal transplant procedure done which took care of the c diff.  That shit (pun intended) is nasty awful and I really don't want to have any chance of introducing that crap (look there's another pun, lol) back.
I am interviewing a Nurse Friday afternoon to come work with us.  This summer we are temporarily losing a nurse to maternity leave in June and then the end of June we are sadly losing one of our nurses.  She is moving and we are so sad that she is leaving us.  Just when we have the nursing schedule completely covered and with an AMAZING team I blinked and it gets all thrown off.  I have 3.5 months to get things covered.....lets see if I can make it happen.  It's so unsettling to have a stranger come into our home, not only is hard enough to find a nurses that is willing to come work with us, BUT then you have to make sure they are certified, trustworthy, dependable, and capable.  Because let me tell you there are some real doosies out there....believe me you can't make this shit up.  Don't get me wrong there are some wonderful nurses that have come through our doors, but then there hasn't been so wonderful nurses.  Just what we've dealt with in the 9 years we've had nursing ~
~ Caught a nurses sleeping on the job in the middle of the day as they were too tired from working the night shift at a hospital the night before.
~ Nurse was stealing valium and vent supplies (she was good as I couldn't prove it, but once she was let go the stuff never went missing)
~ I've had nurses come in the home with NO training or experience with traches or vents (agency nurses).....UM excuse me.....NO THANKS!
~ One nurse caused significant trauma to Danny ... not deliberately but more do to lack of common sense and Then proceeded to lie and cover up the incident.  Just recently the abuse of our kiddos from the hands of nurses has come more to light with more n more families getting cameras.... I'm telling you if you don't have them GET them!  It's mind blowing how many of these trusted nurses are hurting our babes that can't speak up or protect themselves. 
~ The cattiness is crazy.....they don't work "together" other then the 5-10 min report off during shift change BUT some just cant handle it, you'd think I was dealing with some high schoolers.
~ The stories I have heard from other families or nurses about their other clients nurses and their shitty attitude,  bad actions, and lack of dependability.  Let's just say I would not stand for so many of what I've heard....I get it many are desperate for help and will take just about anything they can get. 
I'm sorry I'm not risking the safety of my child and believe me I will call anyone out if I have too, as too many remain silent.  I have a child on LIFE SUPPORT where many of the hospitals will not even take on the care (yes all the local hospitals will not take Danny in, if we have to go to an ER they almost always call down immediately to CHOW to have him transported to them) and many nurses will not come work with him because of the high demand he requires.  Our nurses are not glorified babysitters they are his life line.  At any moment things can go tragically bad and they had better be on their game and know what to do when the time comes!   I hold high standards, have expectations, and requirements for our nurses and if that makes me a Bitch....SO BE IT!  People wonder why I am so bat shit crazy/hard core on nurses and why I have cameras in the house, because unfortunately we live in a world that makes it be that way.

After me hearing about Ice fishing for the last 18.5 years....Dan has finally made it on the ice.  I on the other had will be keeping myself on land.  I don't do ICE!!  Now lets see when/if we will have any fish, LOL.
 Dan's new truck is now complete.  Topper, pained two-toned, plow and the final touch of Calico's Pin Stripping. Looks nice!!
A new and exciting business is in the pipeline for the Osero's.  Things are being finalized and the construction plans will be in the works for our new venture in owning a Blimpie Sub shop.  It will be located in the open spot of our retail building next door to our Oshkosh Laundry.  Stay tuned!!

The new RV will be ready for us to pick up with the new dinette booth and couch installed by next week.  Here is the video the dealership had made (it has the old table/bench and couch still).  Enjoy!

I have had a significant amount of friends looking at new handicap accessible vans and they wanted to see what ours does.  For those of you looking in the market.....Here is Ours.  It's a 2017 Toyota Sienna XLE

I have been doing well and staying busy around the house.  It's surprising that I haven't had any MS relapses with how flippin cold it has been around here as I tend to have more issues when it's cold.  It's too cold out for this sissy to venture out if I don't have too, LOL.  I have been working down in the basement redoing my storage area as more shelves were built so I'm rearranging and cleaning out. Now that most of that is completed it's going to be a room that will be closed off instead of being out in the open.
Lil Lacy has kept me busy not only to adjust to our home, routines, and the other pups....which she has done very well....BUT we found out a couple of week ago that she is really sick.  She has what is called a shunted Liver which is essentially her liver isn't getting the proper blood flood so it isn't working correctly.  It is affecting her digestion and her lil body is filling up with toxic ammonia levels which is why she was showing strange neurological issues (yelping, staring at walls, walking funny, and no energy).  THANKFULLY changing her diet to a low protein food, the antibiotic, and Lactulose meds are helping.  There is a surgery that can be preformed for a minimum of $5,000 and it's not a guarantee, plus it's my understanding that with her being a small dog it will make the procedure even more difficult. With the change in meds and diet for now I have my Lil spunky/sassy Lacy back.  I am forever grateful that this change has improved her quality of life as she got SO SICK VERY FAST and I was afraid that after only having her for 2 months I was going to have to put her down.  

Thanks for following our story and Until next time my friends!

Saturday, January 6, 2018

Out with the old In with the new

Happy New Years !!  Lets see what 2018 has in store ~

We were able to spend the holiday and the last few days of 2017 enjoying the warm sun in Florida.  It was amazing weather with the sun out every day and the temps ranged from 75-82 when we were there.  I'm telling you took all the muster I had to come back to the -25 wind chills we are having here in WI for the last WEEK.  It's brutally cold and a bonus is that Dan and I got sick with a nasty cold since we've been home.....I WANT TO GO BACK TO FLORIDA!!

Of course the article we were patiently waiting for was published right after we left for Florida.  Here is the article if you missed it.
Well the picture was definitely BIG enough ~ WOW
 Stunning photos
 Av is finishing up the first semester of her Sophomore year.....amazing how fast her high school years are going.  I'm very proud that she continues to have straight A's with her full academic schedule and crazy dive schedule.  Her first dive meet for the club is on Jan 21st down in Brown Deer, WI at Schroeder Aquatic Center.  It will be a long fun filled day as she will be competing the 1 meter board event in the morning and the 3 meter dives in the evening.  It will be her first meet competing in the 16-18 girls age group....even though she is only 15 the USA diving rules have them compete in the age group of the age they will be turning within that year. So because her bday is towards the end of the year she gets pushed up an age bracket.

Thankfully Danny hasn't gotten this cold that we all have had (Av started it as she was snotty when we left for Fl).  We are planning on having him trial a new vent in a couple weeks so I hope and pray he stays healthy and its a positive trail.  This new vent is called an Astral vent and the new features and technology this thing has is just amazing....light weight, virtually no noise, remote access so Dr/Rt can see what's going on from their locations, and it has an crazy long internal battery (like 20 hours).  Can you tell I'm giddy about this?!  Now to see if it will be a good fit for Danny....despite me LOVING this vent, if Danny doesn't like it, then we don't switch.  Please pray the transition goes smoothly and that he stays healthy for us to switch him over.  The end of the month Danny will see his new GI doctor here at the FV CHOW clinic building...I've heard good things about him and I'm really looking forward to that I don't have to drive 1.5 hours one way for the doctor to say "Looks good, see you in 6 months", now it will only be a 10 min drive.  YAY!!  I am also going to hit up this new GI doctor with some ideas of bring back some real food into Danny's diet.  I'm not sure how it will fly as many are very hesitant as Danny has so many limitation to his nutrition (he only has a 480 calorie a day intake, he is fluid restricted, and he has sensitivities to soy, wheat, dairy....yes a hot mess. lol).  We shall see and it doesn't hurt to ask.  We are in the market for getting a new bed for Danny ~ we would like one that the actual bed moves up in down to accommodate the different caregivers heights and I want to get him a full/queen vs his twin as cuddling with him isn't the easiest. We'll have to look at all the options that are out there and decide which one will fit his needs the best.

Here is a recap to our Christmas Winter Break Vacation ~ wonder if I click my heals 3 times and say there's no place like FL I can go back?  For now the fireplace, blankets, and coffee will have to keep me warm.
We left for our trip on Thursday the 21st around 10pm as we had to wait till Dan finished his Firemen's state testing for a class he was taking.  We drove to an Oasis in the Chicago area to rest for the night.  The next day we drove to ALL day and into the night to get us about 4 hours from our campgrounds.  I have to say in all the traveling we've done we have NEVER seen SO MUCH TRAFFIC wherever we were.
We really got screwed in Nashville this time will significant traffic jams, moronic drivers, and of all things our generator died leaving us without power to the coach.  Thankfully we were able to plug in Danny's vent into the "cigarette" lighter and charge (because the wonderful timing and luck we have I had found out at the time of the generator fail that the vent was never plugged in resulting in dead batteries, ugh) as I was prepared to bag him if I needed to.  We pulled of the interstate to see if there was a "simple" fix Dan could do on the side of the road, but nothing easy was found.  We called a 24/7 mobile RV repair guy but do to it being the holiday and it was 9pm he was out of town so we decided to keep on moving south to warmer weather and we would have someone look at it once we were in FL.  As long as the vent was plugged in we were ok without electricity, we also didn't have water in the unit as the temps were way too cold in WI and the neighboring states that the lines could have froze so we were "roughing" it.
(Oh I forgot to mention that we took Av's Boyfriend Jaden along with us - one of their Christmas presents was to be together)
Our Campsite was wonderful. It was clean, small and the views were beautiful.  It was 1 mile from the Fort Myers beach which made it somewhat easier to walk there instead of waiting in the line of traffic FOREVER to just go 1 mile.  I thought we were the odd balls/black sheep for going somewhere for the holidays but being in the crazy Traffic the whole way down to FL and seeing the massive amount of people IN Florida I'm understanding that MANY people are gone for the holidays.  I found it interesting that the neighbors right to the right of us were from Madison, WI and the neighbors 2 doors down to our left were from Wisconsin Dells, WI....great minds think alike!  Get out of the COLD temps!!
Map of the campground ~ our spot is the 4th place going in on the far left.

Our home for 10 days!!
 The marina area even had ramps to roll Danny down if we should have a boat there....he can get on it.
 One day this Manatee came swimming in the waters by our RV....I heard it was very odd for them to be in there, but I guess the water was warmer there so it brought some into play.
Once we got into our spot it was game on to get things set up for the stay, get us all showered, and then it was off to get some food.  Our first stop was to Sweet Tomatoes which is a staple for us when we are down in FL (heck we look for these every time we are on vacation)
 It happened to be Danny's 14th bday on the 23rd so he got some Ice Cream to celebrate.  It's always nicer to celebrate your bday in the warmth of FL.  Happy Birthday Buddy!!!
Av and Jaden spent everyday down at the beach. We went down there a couple of times as there is not much one in a wheelchair can do on the beach.  We walked the pier and the boardwalk where we had a couple cocktails and listened to some music.
 Beautiful poinsettia "tree" on the beach
 The kids rented a jet Ski
 Ah ~ relax and breathe
One man band and he was really good!
 Yes you will see Dan in shorts while on vacation too :)
The kids went parasailing too :)
Christmas eve we went out to dinner to Pincher's crab shack (my favorite place) and Santa came early so we opened gifts after dinner.
Someone decided to turn his thermostat on while down in FL and the first time in years he was in shorts.  We had to go out and get some more (which by the way wasn't an easy find even in FL as it's their winter too even though the temps said other wise to us)
 Jaden is trying to convert Danny into being a Maryland fan and NOT an Iowa Hawkeye fan....the challenge is on
Christmas we went on a Holiday Buffet Cruise
Merry Christmas from our family to yours
Food, music.........
 and a VIEW!

Wednesday Dan and Danny stayed back at the campgrounds while I took the kids to the amusement park Universal.  The trip was definitely EVENTFUL!!  We left later then we had planned, our 3 hours drive to get there ended up turning into a 5 HOUR drive, and when we got there OMG the people.  The average wait time for a ride was 2.5-3 hours A RIDE!!  Av was disappointed, near tears, and somewhat overwhelmed (I on the other hand was extremely overwhelmed). We really had gone there just to do the Harry Potter stuff, but so was everyone else and it pretty obvious with us being there only a part of the day we were not going to be able to do what we had intended on. What a bust but we made the best out of it and at least the weather was great!
 A sea of wall to wall people!
 Butter beer
 Their first ride they went was only an hour wait
 While I sat on the fake grass near by and enjoyed the sun
Towards the end of the day they had a I decided to try the Harry Potter rides again in hopes more people were at the parade and  the wait time for the rides was less.
 Saw this cool transformer coming out of the building while we were high tailing it back to HP
 The dragon on the the bank blows fire!!
 Well we were there to do HP so we decided we'd wait for the ride that was in the bank (as we did the ride in the castle years prior when we went before).  Only 135 minute wait.....we'll that's better then the 195 minute wait earlier.  By the time we go to the entrance of the building the sun had gone down and it was getting chilly.  Thankfully it the wait was just under 2 hours so that was a pleasant surprise. 
 We made it!
 So life like!
 3D glasses ready
 We all agreed that the ride wasn't worth that long of a wait, but we did it and we can check that on our list of things we did.
 After the ride we went to get more Butter beer (one hot for me as I was still wearing a tank top and was freezing) and then we were going to head home.
 BUT as we were passing the HOGWARTS EXPRESS line I notice the wait was only 30 minutes ~ let do THIS!!
 While walking in if I was paying more attention they had this cool hologram that made it look like you were actually walking through the wall to get into 9 3/4 landing.  But it was too late for me to go back and get a photo ~ it was pretty neat!!
 On the train you couldn't take videos but the glass "window" put on a show while we were on the train.  It even had the dementors show up.  Av was pretty excited !!  I'm so glad we went on it as she was really looking forward to the whole HP experience but felt bad for "ruining" our time there by waiting.
 At the end of the train ride we ended up at the entrance of the castle and we had planned on leaving then
So pretty all lit up for the holiday
 But right then the light show of the castle was starting so we were able to see that too ~  It was amazing!!
We got Danny a Dobby shirt ~  Cutest Dobby around!!
I was pleasantly surprised how quickly we got out of the parking garage.  With amount of people that were walking out with us I really had thought we'd be there forever!  Good thing we made some time up with the parking garage as once I got on the interstate we were in the stop n start and then STOPPED on the highway for hours, due to an accident.  Prayers to all involved as it didn't look good once we were finally able to get to the site.  It was there through tears, stress, anxiety, pain and severe exhaustion that I made a decision that we will NOT be going anywhere that is out of a 30-45 minute radius (with the amount of traffic its usually about 15 miles) from our campgrounds.  I didn't pull into the campgrounds that night until 2:15 am (another 5 hours drive home).  I wasn't sure I was going to get us there as I had been up for 21 hours, drove a total of 10 hours, and throw in an amusement park in there.....I was a HOT MESS!
Thankfully we didn't have anything planned the rest of the trip, just some rest and relaxation.  We did go visit our former neighborhood and neighbors at the Breckenridge in Estero Florida where we used to have our condo and live part time.  I have people asking all the time if I had a good time....well that one is a hard one answer.  The weather was fabulous and for that it was great, but it's a lot work for me when on vacation with getting Danny and myself ready doing just daily stuff.  Then the reality of us (Dan, Danny and myself) not being able to do a lot of stuff and the kids doing everything they can (we can live through the older ones, but then it also makes you somewhat that bad?). Don't get me wrong we do A LOT with Danny and I am grateful for the opportunities and things we are able to do, but some times life/reality is hard and you wonder what a normal life would be like.  
We were able to get a mobile RV repair company to come look at the broken generator.  We found out the generator wasn't going to be able to be repaired before we had to go back to WI which then brought on a whole new set of stressers as we were heading back to WI in the sub zero temps with no electricity or water and the hopes that the coach battery was going to keep the heater running was unknown.  I decided This is was going to be our last voyage in this RV!!  With all the issues we've had our irritations and inconveniences with this RV  has just metastasized into a life n death situation....and I'm SO DONE with this RV.   We left Saturday mid morning and headed into Tampa to ironically look at a used RV that was for sale.  We got some great ideas from the RV and met a wonderful couple and headed back on our way to WI.  We decided to stop at the border of Georgia and Florida to sleep for one more good nite of sleep in the warmer weather (it was still chilly as it got into the low 40's over nite) as the next day we were driving until we got home.  At one of the pit stops we took, Dan noticed one of  the rims on the car dolly didn't look right.  After further investigation he found that the nuts had come loose on the bolts and it had broken off some of the bolts from the tire wobbling, so at the rest area Dan was able to repair the dolly and replace the tire.  Boy am I glad he found that when we were stopped and not when/if the tire fell off while driving on the interstate.  
THANKFULLY we were able to have the heater on in the RV so the kids were not Popsicles and we didn't have to resort to plan B which was unloading the kids and I into the mini van so we'd have heat and I would follow the RV home. We drove through the Chicago area just as the Midnight bell rang out on New Years Eve/Day and it was cool to see all of the firework displays going on.  I was amazed at how many fireworks were fired off and that we were actually UP for the first time in years on New Years Eve. 
The sides of Monteagle had these amazing blue icicles hanging of it
On the way home I was was doing a search and was able to find a new '17 RV at a dealership in Indiana, that was just like the one we had looked at in Tampa.  First thing on Tuesday after the New Year holiday I called them and we are now owners of a newer (god I hope better) RV.  Thankfully I called when I did as couple had drove down over to Indiana from Minnesota to look at it and had the intent on purchasing it the next day.  I guess I didn't make them too happy when they found out it sold the night before to me.  I know this one we will still have issues too as every RVer out there knows these things are notorious for "issues".  We had to have some things changed and added to the new one so once that is done we can pick it up, which it's looking like a 2 month turn around time for the stuff to get there and be installed.  I can't wait to show you all the newer/better options this RV has for us.
Now that we are home we are starting to get back into our routines.  I still have a few things to do to the old RV to get it ready to be picked up and sold.  I have to deChristmas this house.  And tis the season for me to go into PURGE mode.  With me being under the weather the last few days all of that has been put on hold, but I know it will all be waiting for me when I'm ready.  GAME ON!!
Thanks for following our journey!  Stay tuned to see what 2018 had in store for us