Thursday, May 4, 2017

Here We GO

Spring is in the air ~ So Bring on the Change!  I'm hoping for a stellar yard n flowers this year with the whole April Showers brings May flowers.  WOW did we have some rain!  The temps are increasing and the birds are making their way back.  We've had a few really nice days that the we had the windows open, BUT we've also had some fires in the fireplace lately too.  I just LOVE the bright greens with everything a bloom and listening to the birds chirping.  Dan tilled the garden last week so we are ready to start planting once Mother Nature calms down with her drops in temps.

Next week we are going to two different banquets to celebrate Av's accomplishments with her freshman dive season.  The first one will be in Hartford,WI for the All State awards and the second will be in Green Bay, WI at Lambeau Field (Home of the Green Bay Packers) where they are having Clay Matthews as a guest speaker.... it should be a great time.  In the local paper there is an article about the kids that made the honor roll and I'm excited to report that Av made the A honor roll.  I'm just beaming with pride!!
Av's club dive season already had it's Regional meet in Iowa at the University (Go Hawkeyes!!) and Av placed into Zones on the 1M and 3M springboards.  Zone this year will be in June at Schroeder Aquatics in Brown Deer, WI.  I'm loving that it isn't too far away....just one hour and fifteen minutes away. If she places in the top 12 of each event she will then move onto Nationals which is being held in Columbus, OH in August this year.  Right after Zones are done she'll be heading back over to Iowa for their 5 day long summer dive camp. She really enjoys their summer dive camp program and this will be her 5th time back there.  Av decided to give Indiana Universities summer dive camp a try this year and will be hanging out there the first week in July.  In addition to Av's diving this summer she is registered into the class/written part of Drivers ED......NO ~ say it isn't so!  She has to wait till 15.5 yrs to register for the driving part of the class which won't be till this time next year, but she is already getting some time behind with wheel with Dan n I around the neighborhood and she's a very cautious and attentive driver.
Last week I was called to come to school to pick up Av as she had a bad headache and didn't feel good.  It came on abruptly and very intense which was alarming as she really doesn't even get headaches.  I ended up taking her to the ER that afternoon to make sure nothing serious was going on.  Thankfully she checked out ok after they did labs, an MRI, and a concussion test.  Part of me was glad they did an MRI as I knew if there were any lesions or other signs of MS that would be seen as she has a higher probability of having MS seeing she is a girl and I have it.  Thank GOD all was clear with that.  I also took her into get her eyes checked out to make sure there wasn't any change there and I brought her to see her Primary as a follow to our ER visit yesterday and the plan is to she if this happens again before doing anything.  The theory is she had a migraine and time will tell if we will need to intervene if she continues to get them.
Tonight we have Av's last band concert as a Freshman.  Wow did 9th grade go by fast!!  She still will be performing as she will be marching in the Memorial day parade.  Av found out that she was enrolled into the Advanced Wind Symphony for next years band.  From what I gather it's one highest band class to be in.  It should be a scheduling nightmare in the fall with her dive season going on and the requirements of the band performances.  EEEEP!  Av was also excepted into the Launch program for next year.  This is a leadership program that is designed to help the in coming Freshman.  It was a very cool process for her to go through to get excepted and they have already had a couple training leadership trips and they have a few outings and retreats planned this summer before next school year starts.  Av and the group she was assigned with not only will be helping the coming freshman navigate the school but they will be conducting a class called Freshman Seminar that they will be designing lesson plans and teaching for the first semester of the year.  I've heard great things about Launch program and I'm excited to see how she does.

Danny had been doing well and is stable ...for the most part.  We just had a "fun" filled day down at Children's Hospital of Wisconsin with trache/vent clinic where we see Pulm, Ent, trache nurse and a Vent nurse.  They were all pleased with Danny's respiratory status and how good he looks.  There was no change done at this visit and we are to see them back in 6 months.  I am very excited and cautiously optimistic about CHOW showing interest in a new vent that I have been requesting to trial on Danny.  It's call the Astral vent and I've been on the push from Danny to try this for awhile.  I think I almost have them on board now as they are going to be looking into seeing if the company can bring a vent over for them to check out.  It is a smaller unit which is also lighter weight (7 lbs vs the brick we have now), the internal battery life is 20hrs vs the 2 external batteries we have that only last 5 hours if we are lucky, and I hear that they can remotely trouble shoot the vent via internet vs having to be here at the house (which the closest RT is 45 minutes away from us).  Cross your fingers that this can work out for us.  Danny does have an open order in the system from ENT that when the next surgical procedure happens they will come in and do a Bronc to take a look down his trachea, and deep clean his chronically nasty ears.  We don't have anything in a hopper yet, but with him never having a deep teeth clean and now this we might just do a "quick" day surgery and get it all done at one time.  After the 2 hr trache/vent we had a GI and dietary appt to go to.  That too went pretty well and I had to agree to not make any changes in the next 6 months seeing we've finally stabilized his weight issues.  I would really like to bring back some real food blends into his diet but with his fluid and calorie restrictions it's always a fine line of what we can do before his weight sky rockets because addl calories and water retention.  I'll just have to go with the flow for a bit and see if he continues to behave before I really think of starting anything again as his weight being at 94 is still Husky but more manageable then the 102 he was at.  Hey I have a good reason to call him Pork Chop - LOL.  We also went over and had a full spine with hip xray done to check to make sure things were doing ok on the Ortho front.  I have seen the reports but have not talked with the doctor about it but I do see there is now an abnormality found in his left hip which could be the cause to some of the issues we are having with positioning.  I have an a request for an appt time to talk with the Ortho so we can go over the xray results.
In other not so good news....Our primary nurse Ms Emma has decided to look for other employment opportunities.  There are many variables in being a home care nurse and it's not for everyone.  We loved having her be here to care for Danny and she has become so much more then a nurse to us.  She is and always will be family to us.  So once again we are in NEED of private duty nursing hour coverage for little man.  Unfortunately there is a HUGE shortage of home care nurses in the Valley and ones that are trained with traches and vents are even more scarce.  UGH!!
Thanks for stopping by to check on us.  I hope this find you well!
Here are some photos from Easter
 3 generations of Dan Osero's ~  All I see is TROUBLE




Saturday, April 8, 2017

Fun n the Sun on Spring Break

There is ALWAYS a story to be told when we decide to go on "Vacation".   We chose to go down to St. Petersburg, FL this year for Spring Break.  Boy did we pick an amazing week to be down there as the weather was picture perfect with the temps being 80-85 and then sun shining EVERY day and the crowds weren't bad at all.  Here is a summary of our Spring Break.
Our plan was to leave around 2-3pm on Wednesday March 22nd, BUT the motor home had different ideas.  First Dan was still hanging on to a nasty barky cough even after a round of antibiotics so the day we were leaving he went into to see the Doctor again.  They put him on an inhaler and a different family of antibiotics, fun times!
When we were to fill the RV with water we found out the water pump didn't work, so off to find a water pump that would work.  We didn't find the correct pump but we did find one that would work, it was just alil bigger.  Once the RV was filled with water 3hrs late we were on the road heading to the sunshine state.
 Danny is always smiling when getting in the RV ~ he just LOVES the RV
 All packed up and ready to GO ~ Ms Emma and Av had her friend Lydia come with us
 Getting away from the cold crappy weather for awhile
 Well we got about 30 miles south when the generator died.  We can NOT travel without electricity to power up Danny's equipment, have the heater on, or god for forbid the tv/movies weren't available.  SO back home we went to have Dan install a new fuel pump on the generator...once again NOT the one that was needed for our unit BUT one that would work for the time being.  Estimated time to leave was say 2pm, first time we left was around 5:30pm, and then we left for a second time at 9pm.  7hrs later we were on our way ...... I hopes we weren't going to have to turn around again.
 Where you will find the girls the majority of the ride down to FL and back home....watching movies.
Awe ~ shhhhhh
 Yes I do drive the RV
 BUT then Dan holds on....even while he is sleeping ~ LOL
 Out walking and stretching their legs at the Flying J gas station....A place we typically stop at as they have a large enough gas pump area for RV's that are gas not diesel
I was wondering if we were going to actually see the sunshine state......Welcome to Florida!!
 Starting early on the tan through the windshield.
 Danny too !!
 The girls would get together and play games
We had to travel over a VERY LONG bridge to get to St Petersburg FL.....Have I told you I Do NOT like bridges.  EEEKKK
 Seriously are we off yet?!?!
 St Petersburg!!
 Once at the campground the vent did not open so Av went up on the roof to help me open the vent door
Our Camp site DW27 at the KOA campgrounds in St Petersburg.  The gentlemen that helped us to our campsite was so friendly.  He noticed our WI plates and when we told him we were from Neenah....his first comment was "The ROCKETS".  HA!  He was from WI and is now a full time Rv'er
With a beautiful view of the channel from the back window of our RV
 
How the Wheelchair lift works in the RV

The inside of the RV

How we shower Danny in the RV

The cabin the girls and Ms Emma stayed in while at the campground
Pool life!
 Father like son ~ shhhhh
Alil Mimosa by the pool :)
Birds!!
From what the locals were telling me this is a Northern Squeak Owl.....must be lost to be in southern FL
 Watch out Lydia, it's going to get you
Relaxing
Double trouble!!

The luck of the G-Tube ~ NOT
After having a brand new G tube in for about 3 weeks (usually they are replace without defect every 3 months) Danny's tube's balloon (what holds the tube in his stomach) popped.  We put in our spare that was a size down and within 12 hrs that one too ...... POPPED!!  
Seriously!!
We taped the tube in so it wouldn't fall out which would lead to the hole closing
By some luck one of my very good FB friends had a spare gtube in the exact same size I needed.  BUT she lives in Seattle....we are in FL. SO she had it shipped priority to us at the campgrounds and 2 days later....We had a new tube.  Thankfully the tube didn't cause us any more grief the rest of the vacation

On Saturday we went to John's Pass boardwalk
 shopping
 Emma found a friend ~ lol
Me and my handsome Lil Man
 #mannequinchallenge
 Fun pirate dinner cruise that we watched
 Bubba Gump for dinner ~ unfortunately the we waited at our table for 1.5hrs before our food came and it wasn't the best.  Usually we have great service and food at Bubba Gump
 The company and drinks were the best part of our dinner
 Dolphin swimming around that we enjoyed watching
Walking on the bridge to get a better photo of the sunset
What beautiful sunsets

On Monday we were headed to Clearwater, FL
First adventure was a Tropical Buffet Cruise
They were so accommodating to get Danny on board
Rum Punch was SOOOO Yummy!!
We were told this was John Travolta's summer home
Tom Cruise's summer home
 
Very cool sandbar
Yeap another Rum Punch ~ I told you they were good
LOVE
Shark attack ~ another fun tour boat we saw on the water
After the cruise we went to the Clearwater Aquarium where the "DolphinTale" movies were taped and we saw Winter, Hope and Rufus
Sharks
 
Winter
Winter get some PT to help her spine
A room where some of the scenes of the movie were filmed
Otters
 
We got to see Nicolas who was rescued when 6 months old when beached with his sick Mom, unfortunately his mom passed away but Nicolas has recovered but scared from the sun burn
 Touching Sting Rays's
 Frenchie's on Clearwater beach for Dinner
Yeap .... Had to refresh over another rum drink
Can't keep the girls away from the water ~ "text me when the food is at the table"
 Dessert!
Toes in the sand
Bright and early Tuesday we were at the pier at 8:30am so the girls could go Parasailing.  Danny and Ms Emma hung back at the camp site for the morning.
 Getting their instructions ~ .....I have multiple photos of this orb floating around while on our parasailing adventure ~ Can you see the orb?  By Lydia's left knee
 Our Captain and his family is from WI too
 It was Lydia's first time
 They got to be approx 400ft above sea level
 What a gorgeous Morning to be on the water ~ See the Orb ?
 Getting Dipped
Video of them being retracted in and getting dipped.... "Here fishy fishy!"
So Much FUN!!  What great memories between friends
 See the Orb?  Down at the base of the building
 After Parasailing we walked across the street over to the beach to just unwind.
Dan reads A LOT when on vacation.
 Photo Bombers!!

 Ahhhhhhhh
 Someone didn't flip and got a nice sun burn/heat rash on her back....a day or two later she was itching like mad!
 We brought Emma some Chick-Fil-A.  She LOVES this stuff but we don't have any close in WI so when out n about it's her go to food.  BUT Lydia is allergic to Chicken and Pork so we were teasing her most of the trip NO CHICK-FIL-A for you!!

Wednesday we hit Tampa and went to Busch Gardens
The girls hit this roller coaster ride right away and it was the biggest one of the park ~ the park wasn't that busy so they got right on
Of course they would be in the first seat 
Love me some Penguins......these are South Africa penguins so they like the warm weather
Throughout the park they had this awesome "animals"
We are loaded and ready for the Serengeti Safari into the animals enclosure
We hand fed Giraffe's ~ it was amazing!
 Feeding the Giraffe's

It was pretty hot and after being out in the sun on the back of the truck feeding the giraffe's, we decided to go into the restaurant for a wonderful meal and some time to cool off in the air conditioning.  
Oh and the frozen drink was Yummy too
After lunch we got on the train that toured the park
Well we know the sunscreen works.....Ms Emma rubbed sunscreen on Danny and then must have touched her shoulders
Whose the biggest kid?
 Looking into the tigers home
 Another roller coaster under their belt and once again the park wasn't busy so they got right on the ride
 Animals
All good things must come to an end....I just wished it would have lasted about 45 minutes more.  The last 30 minutes before the park was to close we entered an interactive show, BUT Danny got overwhelmed and the heat got to him.  He started to wretch and over heat = HOT MESS.  Ms Emma, Danny and Mom didn't make the show as we tended to Danny while the rest of them stayed to watch.
 Cold compress and in the shade while we waited
 It took us till we got home (in WI) before he fully recovered and was back at a baseline.  He stayed in his briefs the majority of the rest of the vacation
When making meds these two girls became our go to med crushers

On Thursday we took an easy day = pool time, the girls rented out a kayak from the campground, and we got everything settled to get ready to leave back to WI on Friday.  We did get out for dinner and went to Pinchers back in Tampa.  We did learn that once on the island we should stay on the island as the 25 min trip took us 1 hr 45 min....good thing the food was GREAT!

 Danny has been crushing on Ms Lydia ~ he's always looking for her and smiling

On the trip I received some devastating news....a very good FB friend of mine Joan's daughter Hannah who was 21 yrs old had passed away very suddenly.  Fly HIGH sweet Hannah, know you will be missed deeply!

Friday we were back on the road....once again the weather was great for traveling.  The few drops of rain fell while we were sleeping Friday morning but it cleared before we needed to load up. The traffic on the trip back home was CRAZY.  Amazingly we didn't get delayed in Atlanta as the day before we left I85 bridge collapsed due to a fire and Atlanta usually a drag to get through in general but the traffic gods were in our favor.  We did get stuck on that BIG bridge getting off the island, it would normally take approx 1.5 hrs but 5 hrs later we were on our way and Nashville wasn't that kind this trip to us either.  

 Vacations are wonderful but it's so nice to see that WI sign.
 Boy did we miss these furbabes ~ they house and pups were watched by 2 of Danny's nurses while we were gone.  Ms Cori and Ms Sarah were wonderful to my babes and the house is still standing, lol

I hope you enjoyed our Spring Break! If you can believe these photos are just the touch of what I have, heehee.
Have a wonderful Easter! Thanks for stopping by to check on us...and I hope this finds you well.