Tuesday, November 25, 2014

Winds of Change

So I find myself at a crossroads once again.  Figuring out to turn left or right is not an easy choice, but staring at the intersection will get me no where.  I have to continue to keep moving and looking for options.  Even though the options seem to be slim to none, I have to keep on searching.  Despite my last Med attempt (which was going back on the Copaxone injections) to keep MS at bay, the last MRI I had done a couple weeks ago has shown that MS has kicked into high gear.  I have also had another relapse in the last few weeks so that makes one relapse requiring BIG DOG steroid (1000mg a day IV for 5 days) about every 4-5 weeks.  The last 2 flare ups I have lost part of my visual field in the right eye.  Scary to say the least.  I don't know what I will do if I lose my sight....It scares the HELL out of me.
Unfortunately the images on my MRI have shown that the meds to help slow the progression and the meds to help bring the inflammation down have done nothing to keep the inflammation/sores from getting bigger or making new ones.  Since my last imaging I have gained more "hot spots" and the ones that I had already have grown in size....SHIT!!  I have to tell you my breath was taking away when the Neurologists office called me and the first words out of her mouth was that the MRI wasn't good.  I had an idea I was going to be getting bad news as I always have the technicians give me a disk with the MRI images for my records and when I went home after the MRI the first thing I did was bring the images up on my computer.  Devastating when I can see plan as day all they lights that have shown up.  When there is a lesion that is flaring, hot spot, exacerbating, active (call it what you will) it will show up as a bright white spot on the images.......and If I can see them with my "untrained" eye, I can only wonder how many of them I am missing.  I have new and bigger ones also in my neck, and thoracic back along with my brain.
Welcome to my Brain!!
This is My Brain on MS ~  Here are just a couple of the effected areas




So I am working with my Neurologists here in the valley along with my Neurologist whom is the head of the MS Clinic at Waukesha Memorial to figure out some options that will be in my best interest.  With my history of Melanoma, thyroid issues, and already elevated Liver functions there isn't too many things left for me to try.  The med option that was brought up for me to possible try is another 3x a week injection called Rebif, but I have to say I'm not too ready to jump on this band wagon again.  This med is an "oldie" but it comes with complications, of course
1. Injection site reactions ~ already had this with the last med so not a huge big deal
2. Liver Problems ~ I'm already teetering with elevated to high normal ALT functions, is it better to let MS progress or try to fit it and end up with significant issues that could result in liver failure.
3. Flu Like symptoms for 24hrs after injection.  So I could potentially be ill 24 off and 24 on for months with chills, fever, body & muscle aches, BUT I can take more meds that would counteract those side effects (hmmmmm sounds fun, doesn't it?)
4. Anxiety/depression/suicidal thoughts......well I guess I won't have to worry about the MS then
5. Thyroid Problems ~ I already teeter between LOW and low normal with my TSH levels, so why not just destroy the thyroid all together.
6.  Bleeding issues ~ causes the infection fighting blood cells to drop, sign me up!
7. Plus Epilepsy !  Hmmmm ~ I will probably will end up having seizures eventually....but I would like to prolong that chapter for as long as I can.  Once those start I can only see a downward slope in my direction.  They scare me, as they can happen at any moment without warning.  What if I'm alone with Danny, what if I'm driving, what if, what if, what if!!!!!!  Then I believe you have to be seizure free for 90 days before they will let you drive again...can you imagine, me home bound?
Now I know that these are all "possible" side effects I could have.  BUT I have to tell you the last 3 meds haven't gone so hot for me.  And now the options I have are ....... SLIM, thank you MS meds for making this fight even more difficult for me to travel.
I am asking about doing some more "alternative" options other then the med route.  Stay tuned to see what comes next!!
 This last does of steroids over the weekend, my med port didn't work properly, so they had to put in a IV access in my forearm, thankfully my veins cooperated this time around.   Everyone needs alil "HOPE"
 I was able to finish my round of meds, but wow does it feel a lot different running them through the arm then the port.  It definitely was felt!!  I went back into the hospital this morning and my port worked today, which was a HUGE relief as I really didn't want to have to think about getting a new one put in soon.  One issue dodged!!
It's nice to having company, especially my Favorite Lil man with me during my infusions.
My inspiration and support !!  Love getting my bedtime snuggles in, sorry dude this will NEVER get old for me :)
MS is all pretty scary to think about, so I try not to worry and fret about it too much as it's not going to make things any better worrying....but there are those occasions that I am caught off guard and I start to wonder and plead.  Saturday nite happened to be my time I guess.  It was just me and Danny (and the pups) since Friday as Dan and Av went up North hunting and I'm not sure why or where my anxiety all came from, maybe because the port didn't work or because I was having some memory issues, I don't know....But I laid in bed with a headache and then this warm flushed feeling start to take over my face plus I had already was having High Blood Pressue.  Nothing new to my MS symptoms, but then I thought what if it's more then MS or what if it was MS and things were going to go downhill.  Should I call someone, Should I wait?  I was all alone with Danny and I found myself pleading with the powers that be....I begged that nothing serious would happen while I was on Danny duty (EVER).  I bargained that I would be ok without a cure, to be in pain, and even in a chair sooner then I care to be....BUT PLEASE don't ever take my cognition, vision, and allow me some upper body control to be able to touch and hold my son.  I'm not sure that is how it all works, but I was going to be giving it my BEST SHOT!  Then I feared what if something did happen to me ?  Would Danny be ok, how would the nurse get in for help, and on and on and on and on and on ~ my mind was racing.  I was glad I was able to fall asleep AND that nothing bad had happened, but man those kind of nites really do SUCK!
Love this Cup....you never really know.....do you ~ LOL
Pretty appropriate for me, right?!
It's all better with....... PUMPKIN, in my opinion. 
The Perks of Dan being up North ~ I get to have PUMPKIN flavored coffee and all the extras :)  He's not into all the foofoo stuff, so I take advantage of it when I can.

Well the 2014 Deer Hunting season is upon us.  Ms Av is 12, went through hunter safety last year and can now officially be at the Shack during opening weekend.  She was VERY excited to go.  I have to say I had my reservations, but she loves being there and I guess she's fitting right in.  I hope the guys enjoyed her being there as much she did.  I have been informed that she wants to be there EVERY YEAR!!
Before she left she was up early on Friday before her ride got her (Dan was already up there) and here she is sewing herself and camo hat and she then made a hat for Danny too.
 He doesn't look impressed because he has a cold right now, but he liked the hat!
 Dan and Av hunt out in a warmed shelter (per MOM's request for her to go out hunting) .....Love that we have the availability to chit chat via text when they are out there
 Av taking shots of her dad and sending them to me, hunting is hardwork. LOL
 She LOVES the "shack" life I think more then the hunting part.....the guys are showing her the ropes at cards, dice and Foosball.  I've heard she's alil shark and has made alil money while there.
 2014 Deer Hunting Shack Crew ~ What amazing father/daughter traditions and memories these 2 are making.
 Love this photo Dan sent me today.  Beautiful!!
 And just moments later......BANG!  Av harvests her 2nd deer.  2 years in a row!!  Textbook heart shot, only one shot, and the deer dropped with no running.  How cool!!  Now the real hard work begins as we skin, cut, and process our own meat.  She was getting down the the last minutes of the last day of her hunt, her patience was rewarded
How crazy is this?  I was out videoing the snow falling to send to Av n Dan when this deer comes out.  It's was obviously wounded as you can see it's insides hanging from under the belly.  This just angers me....DO NOT WOUND an animal you better know what you are doing.  I went out to see if I could find it on our land but it was no where to be found.  I had heard a round of 6 or 7 shots that day earlier...I have to wonder.  If you can't shoot it on the first, ok maybe the second...then stop going out as it's not a hunt then.  Poor thing!  Would have been cool to see if it it wasn't hurt.
video

Danny and I had a special visitor this last weekend.  Ms Krista and her baby boy, Kolton were in town and they stopped by to visit us! It was so nice to see them, boy we sure do miss her.  He's just a Ham....I could just eat him up!! What a happy boy and that smile he has is just contagious.  I was getting my Baby fix on!!!
 Danny chilling with Kolton.  He really is a good sitter :)
I think I'm going to have to have a "baby" photo of Danny with all the babes that have been born.  Just with the nurses there have been 7 pregnancies in the last 5 years.  Now if we were to count the therapist that used to work with us you can add an additional, I believe 6 to that total.  It's in the water here I swear!!
Danny and Sully have been bonding.  Isn't this the cutest ?!?
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A boy and a Pup!!


This year Danny made his OWN Tree with his hand, foot, and finger prints (thanks Ms Aleana).....we are calling it his Blessing Tree and we'll be adding sayings through the Holidays that Danny is blessed or thankful for.  I even put him to work holding the glue stick so we could put his finger print lite bulbs on the tree.  Way to go Danny!!
 I don't think Danny believes me when I tell him it really isn't winter yet. Going out he's all bundled up as the temps here are bitter cold (down to the single digits with the wind chills)

 AND LOTS OF SNOW already!!  YUCK!!  It's going to be a VERY LONG winter I tell ya :(

I am happy to report that Danny and I interviewed a new nurse last Friday and we LOVED her!!  I am very excited to have her come work with us on Danny's Team.  I keep wanting to pinch myself as things are falling into place as if they are "too good to be true".  She's all the aspects I have been looking for in an RN to work with Danny.  It's not easy, believe me...to find a nurse that I can honestly say I trust working with Danny is very hard to find.  I've been burned enough times to be cautiously optimist but I can only hope that all my excitement and expectations are true and things are really going to start turning around with nursing for Danny.  We will have a wonderful TEAM of caring, hardworking, dedicated nurses for Danny once again.  Even though the last few months haven't been the easiest on myself, Danny, or our amazing nurses we already have.....I'm hopeful that the pieces are starting to fall back together.  
I am putting together an order for custom tshirts for Danny's Team!  Do you want to show Danny your support ?!? 
We've chosen to do Option #5.  They come in the blue or red, short sleeve or long.  If you would like one for yourself or to dress up your family..... just let me know what color, size, and sleeve by Dec 1st (or asap) so I can put it on our order.  I will have a better idea on cost once I get the total shirts ordered.  The more shirts the better the deal.  I will try to have as many as I can shipped to my house and hand deliver them to keep costs down for you guys, BUT feel free to order one and we can have it shipped directly to you for addl cost If you'd like one and you don't live close.  I believe the short sleeve will be running $13-$15 and add $3 more for long sleeve.  You can email me at dadlosero@yahoo.com, FB message me, or text me your order.

Have a Happy Thanksgiving ~ From The Osero's !

Sunday, November 9, 2014

Crazy lifestyle we have and loving every minute of it!

He was in such a good mood!!  I saw Danny trying to use his mouth so I took the water out of his cuff in his trache which allowed the air to push up and out his vocal cords allowing him to talk.  Oh how I LOVE hearing that voice.  It's been so long and so few in between occasions.  Danny and I used to have many conversations through a day before he had his trache.  I hope he starts to use he voice more often, I miss our chats.
video

Happy Halloween!!
The weather here was projected to be rainy, cold, windy, with possible snow.  Thankfully it really didn't rain and there was no snow, but it was cold and very windy.  We didn't have many trick or treaters but the Osero house was all dressed up for the occasion, yes even the pups
 The cutest Sully n Olaf :) ~ Danny didn't go out, but he helped me hand out candy.  It was way Too cold for him to be out.  Av went out trick or treating with her cousin and his dad and boy did they make out the candy stash.
 Oooooo ~ Scary!
 We are ready to hand out Candy

 Danny had a visit from the "snow princess".  He really enjoys his visits from her.
 Their candy stash....all sorted by types.  They both had to have their Candy accounted for before they could fall asleep :)

Unfortunately Danny hasn't been in the best of moods lately.  I've pinpointed it to be his left leg/hip :(.  Danny is going to be visiting Dr K this Wednesday for xrays and a once over.  He also has had a pee sized lump behind his left ear for many weeks that I want looked at.  I've seen this face more then I care to see so I'm hoping we can find out what's wrong so that we can help him.  Not knowing is just awful.  I'll keep you posted!
I had to let our new Private Duty Nurse go.  She's a nice lady, but things just weren't going as smoothly as I had hoped and I was having some concerns.  Even though it's more work for me now that she's gone, as I don't have nursing during the day hours for the week, but I'm less stressed so that tells me something....I made the right decision.    I do have Tuesdays covered and the next 3 Wednesday's covered by the agency so that is nice.  The agency is looking at hiring a nurse to work with us, but as of yet there is no one that they can send us.  I'm hoping we'll find the perfect fit for us soon.

Avrianna had a dive meet last weekend in Brown Deer at Schroeder.  Dan and I went down with her for the day and she did fantastic.  She placed 1st in all 3 of her events ~ 1 meter springboard, 3 meter springboard, and 5 meter platform.  We are so proud of her!!  
 Sporting her 3 1st place medals
 Av n her coach.....what a great team they make!!
 On the way home....All worn out!!  14 hours gone and 11 of them on a warm, humid pool deck.
Here is 2 of her dives
video

video

The Girls Diving Season is just about finished for the high school kids.  I have been working hard at getting the edive scoring system up and running.  Their are still some kinks to be worked out, but I'm getting a better handle on it.  By the time Av is diving for the HS I hope to have it all down pat.  Av has been helping out during the invitational and sectional meets. 
All smiles before the system crashed on me at the invitational ~ 
 Pencil head.....
She's working the scoring table!
 Even Danny came along to help me set up at the Sectionals this last week :)



Sully's new coat.....
 See we have SNOW already.  Thankfully the storm didn't run down as far down as it was thought too, so only about an inch more is heading our way...not the 5-7 up to 10" that they had thought.  UGH!  It's way too early for this kind of weather already.  What happened to the global warming I keep hearing about....it's must have skipped over WI.


Av and I have been hanging out at church lately.  I help out every Wed for Confirmation class and then Av and I practice chimes together before that.  In addition to us going on Sundays when she acolytes or we have to perform Chimes.  Plus I help run the Youth events (the 1st Wed of the month from 330-530)
Carving Pumpkins

 Worked the Chili supper
  Last Wed before Confirmation class we had a Youth event and we put together gift bowls that will be given to our congregation members that have lost a loved one this year.  We in charge of the ornament this year.  We did a silver bell and attached a white feather with the saying "Every time a bell rings, An Angel gets their wings".  We also put together bags of towels soap n blankets that will be distributed to the Neenah Schools for the children that are homeless in the school district.
Av acolyted today, here she is helping Pastor Cath with communion.
 Sitting in church today and listening to the sermon, there was an AHA moment where I wondered if Pastor Cath knew what I needed to here today.  Warmed the heart and it was good to hear :)
Not an "easy" subject for me to talk about as I found myself really having a hard time with "faith".  It's a work in progress, but I'm finding my place and my beliefs.  What an amazing church family and I'm finding more time that I'm spending with my friends from there.  Our Saviors have been so supportive and excepted us with open arms ~ faults, sins, doubts and all.  It's so unlike the church I grew up in/at.  I was a member since birth and do you think ONCE they would have called, sent a card or stopped by when Danny was so sick....NOPE.  One of my first memories of Our Saviors is when Danny was down in Milwaukee and much to my surprise Pastor Cath and Ruthe come walking in our door to visit...I was floored!  We had only visited the church a couple of times and they took the time out of their busy schedule to drive down and visit - WOW!  I knew right there that we picked a great church and we became members. 

The Packers vs The Bears tonite!!
Boys = Bears and Girls = Green Bay Packers
He's only "allowed" to wear that shirt when there is a Packer/Bear game any other time he's a Packer fan
 What a BUTT!
 Photo bombed during Danny and I's selfie.  He must be resting up for the BIG game tonite.
May the best team win.....The Packers, cuz the Bear's still Suck!  Sorry Danny ~ LOL