The Osero household has been a buzz with everything that's going on .....

I'm happy to report Lil Lacy continues to maintain her sassy spunky self with the new low protein diet and medications that vet has put her on to help with her liver condition.  What a relief that we are able to treat her and hopefully give her the quality of life she deserves !!  She definitely has a sweet spot for Danny and she has managed to become an important member within our family.

Got Popcorn Dad?  We Like popcorn!!

Last week I had another great parent/teacher conference on Av.  I'm so proud of her hard work and demeanor at school....BUT at times I have to wonderful if this wonderful kiddo that rave about is really my kid, lol.  I'm sure many can attest to the 180 different spin these kids take from the way they act in the house around us parents to how they act in public.  

Av had a nice time at Winterfest.... 

Aren't they sweet ~ So cute!  Seeing Jaden is a Junior I can assume they will be going to Prom too....oh boy the prom preparations.
I'm always intrigued when I receive a message from Av to look at her snapchat postings.  It's like Russian roulette as to if it's good new or not.... this one

NOT so much of good news ~ OUCH!!  When its foot vs board (or anything vs board for that matter)..... the board wins!!  Thankfully she did not break or fracture anything, just a good sprain that required her to wear a walking boot for a few days until she could put more pressure on it to walk without the added support.   She's not the best patient as she wasn't impressed that she had to not only wear the boot but also that she had to take the rest of the week off of dive practice.  Av returned to practice with only a few days off but the foot let her know it wasn't happy with her .... it's hard to keep her off the boards!!  This weekend Av and I will be heading down to the Chicago area to compete at Northwestern college.  This will be Av's last regular club meet before her Region and Zone competitions to see where her National placement will be.

We finally made Danny's  vent transition from the LTV to the Astral vent.  It wasn't as smooth as I was hoping for but I see light at the end of the tunnel.  Danny did remarkably well with the transition there was just MANY hiccups and issues we ran into along the way.  Not surprising the biggest issue we ran into was the lack of communication and mistakes we encountered during the unnecessary 24hr impatient stay to the Children's Hospital.  Thankfully it was only 24hrs and we were able to get out of there before they screwed him up or he got some bug to make him sick.  We have been working closely with Danny's Respiratory therapists to tweak things that have shown up (mostly nuisance alarms) and now I think I can safely say .... I REALLY LOVE this new vent!!  I was pretty disappointed/discouraged the first week but thanks to his wonderful RT's they have made the world of difference with some setting changes.  Now if only we started this venture with them and not the power struggle with the powers that be in CHOW, ha now that is wishful thinking.  This new vent is going to open up many new adventures for Danny as traveling will be so much easier with the smaller lightweight machine and the longer battery life. 
Old LTV Vent

The old vent was so noisy

 New Astral Vent

Listen to the difference .... it's so quiet!  It will take me awhile to get used to the lack of noises.  Danny could definitely sneak up on me and scare me now, as the last vent I could here clear across the house

Danny got a BIG BOY bed.  It was hard to take out of the room his Sleep Safe Bed.  He was given that bed in when he was just 3.5yrs old by Make A Wish.  His wish was granted each and everyday when he was in it.  It was/is an amazing bed BUT we felt Danny needed a bigger bed for more room and one that would adjust in height to help the nurses backs out. 

Out with the Old ~ Locally custom made Sleep Safe frame made around an articulating hospital bed.

In with the New ~ Flex-A-Bed hi Low ! At it's lowest positions and look at all the room for me to get in and snuggle with him.  Dan is building a "headboard" of more shelving behind the bed and a wood base to wrap around the metal.

at it's highest positions, the bed also has massage and an under the bed LED light.

Danny also got a new CPT vest "Mr Jiggles".  This one is just the vest that is battery powered and has all the jazz inside the vest so no machine or tubing to hook up too.  This vest also has three different modes to help with his airway clearance Percussion, Vibration, and drainage.  It's bigger then I has anticipated it to be, but it seems to work out well and should be easier to use when we are traveling vs the other one.

Today we are heading down to Milwaukee Children's hospital to get some xrays of Danny's back and hips then to talk with his Orthopedic surgeon to see if there is anything he sees that could be causing Danny the pain he's been having.  It's one of those I hope the find something so we can fix it, but I really don't want to find anything that needs to be fixed appts.  Tomorrow we will be headed the other direction up to Green Bay to have his ITB pump filled and a routine appt with Danny's Neurologist.  Then it's down to the chicago area on Friday for Av's Dive meet.

I've been dealing with more n more tingling in my lower legs n feet and forearms n hands lately so I have put in a message to have my doctors order up a MRI of my head, neck, and back to see if there is any new developing lesions in there.  Laying in the MRI tube for 2.5 hours is not what I call a relaxing time, blah!  Other then that I have been just plugging along.  Dan and I flew to Indiana last week and picked up our new RV.  Not surprising there are a few things that need to be addressed but I'm hoping once everything is worked out that it will be an amazing vehicle for us and our adventures.

The RV with the bump outs open ~ the new table and couch 

 Bigger roll in shower

 The couch folded down ~ Danny's area 

 Kitchen and Wheelchair lift door

 The lift (not our RV but that's what it looks like)

How the inside looks when we are driving down the road.....TONS of room still

It's now official we are owners of a Blimpie Sub shop!  Dan flew down to Arizona and finalized all the paperwork and such.  This week he will be meeting with the contractors to get the ball rolling with constructing the site.  

I believe the ice fishing is coming to a close and the shanty is going to be removed today.  The ice was very unpredictable this year and the warmer weather lately hasn't helped that.  Last week it rained more then snowed and this week the temps with be above freezing and even in the 50's tomorrow so I can assume the ice will become even more unsteady.  

BRING ON THE SPRING!!

Thanks for stopping by and checking in on us!  

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!