Saturday, May 31, 2014

Yeap ~ We're busy

Wow ~ It's the last day of May and next week is the last week of school for Av.  One more week and then I have a 7th graders.  OMG everything is going by so fast.  Can I hit pause or slow mode? Despite my anxiety of my lil girl growing up so fast, I am SO proud of her.  Words can not express how elated I am about the young lady Avrianna has become.  All the fears I had for her when she was a baby as the "professionals" told me she was be behind, slow, delayed due to her being premature and with all the health issues she has having Spherocytosis (blood disorder).  Boy did she prove them wrong!  At 11 yrs old she has completed 6th grade with flying colors and has even started some 8th grade math.  Can you believe that?!?  She is kind and compassionate way before her years, but she also is very head strong and a go getter when she has her mind set on something.  Did I tell you how beautiful she is?  I'm just in awe of her......I can just sit and look at her from a distance and melt.
I DID THAT!!  My kids are the two most amazing accomplishments I've done in my life.  Nothing will ever compare to making these wonderful beautiful human beings.
Another amazing dive off of the 5M platform.  Dream BIG baby Girl DREAM BIG!!
Talking about school .......
My niece and god child GRADUATED yesterday.  She did it!!  I'm so proud of her.  WAY TO GO WHITNEY!!

 I have to show off my Fur Babies ~ Ms B (Bailey) will be 14 in Sept. and G (Gunner) is 4.  They love each other so much.  It's so cool to see the bond that they have.  It will be a sad sad day when B is no longer with us.  Gunner will be lost :(  But until then I believe Gunner is giving Bailey life I can honestly say that Gunner has turned around Bailey's will since we got him.  Bailey has been a whole different dog at times she acts like a puppy when they play together.  I don't think she knows how old she is :)

On Memorial Day we headed down to Milwaukee to watch the Brewers.  We did that last year and had fun....I think we are going to make a tradition of going there on Memorial day.  I just wish we could bring them some good luck mojo because they have lost both times we have been there :(  That's ok with us as we still had fun!!
 We brought our friends with us....and Ms Paige rode around on my walker.  I'm SO GLAD I brought it as there would have been no way I would have survived with all the walking we did.  Please send up some extra prayers for Ms Paige  ~ she will have back surgery in July to release her tethered spinal cord AND then in Oct she will be having open heart surgery to close the hole she has in her heart (since birth).  Can you believe she's 4!!  What a lil peanut :)  I just love being around her she's a BLAST
 Our seats!  I'm definitely going to be sitting on this side of the field as the sun goes down faster over there.  It was a warm one that day!!  Yes I forgot Danny's sunglasses and hat....bad Mommy

 No Danny you can NOT have that !!

 The roof OPEN.  It started to sprinkle so they closed the roof.  How cool is that!!
 Roof closed....Boy did it really get hot in there after it was closed.  It only sprinkled by us, but the radar showed some nasty weather around us, I assume that's why it stayed closed the rest of the game.
 FIREWORKS!!!  With the homeruns....we got to see them go off 2 times.
 Great time was had by all :)
 Ok ~ I'll share my ice cream with you :)
 Had to have hats :)

 We are still looking for nursing with Danny.  I've had some exciting leads, but unfortunately no follow through with the prospective nurses.  The right one will come along, I just know it!!

Just me :)
 Thursday I went in for a CT scan.  I had to drink the Big Gulp size cup of contrast within 30 mins and then while on the CT scan table they put contrast in my veins.....Damn I should GLOW now.
 I haven't heard back with the results so I'm hoping that no news is good news.  They were scanning from my neck down to my hips for any cancer markers and to check out the 3 "cysts" that was found in my left chest on the last MRI that I had.
I had 2 more moles/spots removed at my Derm appt and wouldn't you know it....BOTH of those bastards came back with Mild A Typical cells.  I have to say this is getting old.  The scary things is they both looked "normal".  I can't wait for the time they call me and tell me that the spots removed were indeed normal.  Until then I will just continue to watch and monitor.  I'm starting to be obsessing over each spot now, but can you blame me.  Once I stop having A typical or cancer being removed then I think I can relax alil.  Talk about stressful!!
MS is still holding on strong.  My legs move alil better here n there.  But they are still very weak and at times its hard to even hold myself up.  They feel tingly and warm even hot ALL the time.  My left/arm is really weakening and is pretty much useless.  To type all this is very difficult and time consuming.  This morning I woke up with the feeling of pins n needles through out.  It's an awful painful feeling.  UGH!!  I can only hope it doesn't stick around too long as I won't be able to tolerate it.
I start PT and Monday and on tuesday my Copaxone (MS med) should be here and then I can start that.  I hope and pray I can get on top of this and start to feel better.  I can't even say "normal" as what the hell is that!!
I found this tattoo on one of my MS FB groups.  I think I found my newest tattoo now to figure out where to put it.

Asking for prayers....My cousin John was involved in a motorcycle vs car accident on May 21.  He was thrown from his motorcycle (not wearing a helmet) sustaining serious head trauma and is fighting for his life.  To follow his story and progress please go to his Caringbridge site.  Any prayers are appreciated he can use as many as he can get.  Heal John Heal!!
Thanks for stopping by to check in on us.  I hope you are well and enjoying each and every moment.  Every day is not guaranteed so live life to the fullest.  Despite all the medical drama, pain and disabilities I face and my family faces, we are alive and together....that's all the matters.  Be happy as life can be very long and hard if you see and dwell on all the bad. 

Wednesday, May 14, 2014

And then there was.........................

Life in The Osero household is ALWAYS interesting!!  It amazing me how much can change in a matter of a couple of weeks.

Danny once again was on a round of Antibiotics due to another UTI, poor bug.  Other then that, Danny has really been pretty good.  The allergies are starting to give him some grief, but nothing we can't handle.  It's always a bittersweet with the allergies....makes Danny miserable, but means things are growing and Spring is upon us.  The weather is almost up to normal temps for this time of year, we've seen some 60 and even a 70 here n there.  YAY!!  The grass is green and growing like mad along with all the flowers, trees and bushes.  The pool is open and ready to swim in.  It's such a pretty time of the year.  We've definitely gotten our fair share of rain, OMG!!  The retention ponds are over flowing and there are flash flood warnings out pretty much every time it rains due to everything being overly full and saturated already.
We are still looking to fill some nursing positions.  I've made a flyer to advertise nursing needed for Danny.  If you know anyone that maybe interested please send them our way.  I've contacted an agency to see what/if they can help us out in the time being.  Can't say I'm impressed with bring in agency on, but who knows I may be pleasantly surprised.

Avrianna is doing great!  6th grade is ending in a few week and I know she is going to be very emotional about it.  She absolutely loved 6th grade.....what a change in then the start of the year.  The fear of the unknown .... she was NOT looking forward to 6th grade and had a nice large attitude about it.  I'm so glad she's done amazing academically and socially this year.  I'd have to say it's probably her best year thus far all around.  I'm so proud of her....she's really growing up to be an amazing young lady.  I so can't wait to see what she grows up to be.
This year it's been dive meets a plenty for Ms Av.  She's doing fantastic.....WAY TO GO AV!!  She's already done 3 meets this year, she has a Regional meet in June and if she qualifies at that meet she will go to a Zone Meet in July.  Thankfully both meets are in Milwaukee so it's relatively close and a place she's familiar with the boards/platforms.  Then if she qualifies at Zones she will go onto Nationals which is held in Tennessee and last 4 days.  WOW!
This last meet she competed for the first time on the platforms.  She dove all her dives on the 5 meter platform.  She did great!  Only practicing once a week (I drive her down the milwaukee to practice) for 4 weeks and then competing against 8 other great divers she placed 4th.  Keep up the great work!!  On the 3M springboard she place 5th out of 11 divers and on the 1M springboard she placed 3rd out of 15 divers.  Watch out Olypmics Av is on her way :)  Here is a video of her dives from the last meet.
Last week I felt a tingly numb sensation that started in my left hip/bum area.  I was starting to feel "off" with each and everyday~ the numb tingling sensitivity feelings started to spread like wild fire.
Shit ~ANOTHER relapse, this makes 4 so far this year.  
Unfortunately this relapse as escalated into something more then the "normal" MS symptoms that I get.  In a weeks time I went from the feeling of numbness and tingling which is very normal for me, to not being about to walk and now it's moving into my hands.  I'm finding very hard to hold onto things and write.  I've never lost function before it's always been a headache, vision, and sensitivity issues.  This is the worst relapse I've ever had and it's scary the hell out of me.  It's AMAZING how fast my body is slipping away.  With everyday it getting worse in worse I've decided to throw in the towel, bow my head and start meds back up.  I'm really left with no other options.  What I've been doing isn't enough.  I am doing a 3 day IV infusion of steroids with the possibility of 5 days or switching to a different med called "ACTHAR".  Well see how things go.  I am now labeled as home bound which allows me to have therapist (PT and OT) come into the home to help me instead of me having to go to them.  That will be so much more convenient for us as now we are down to just Dan driving, meaning he's not only having to do his normal running around all over but now he has to get Av to all her things and me to mine :(  God forbid this loss of leg function is permanent (as I'm finding MS is taking more then it's giving) we'll have to look at adapting our vehicles for me to drive them, but my hope is with time I'll be back to somewhat of a "normal" state.  I also am going to be starting Copaxone injections as a disease modifying drug.  I had been on this med before when I was first dx and I was on it for about 1.5 yrs.  I had told my neuro about my concerns with it not working back then and why should I waste my time starting a med that didn't work before.  She went through all my MRI's from that time period and found that I only got 1 very small lesion on my brain while I was on it.  I guess it was working more then I had thought.  Even though I was still having mild symptoms the disease wasn't progressing while on it.  So seeing it's my only option right now, I will go back on it.  So much for swim suits and tanks tops as at the injection sites it leaves serious red, hot welts and bruising.  Well I guess now I can't even get in the pool ~ so here goes nothing.
First day of Infusion steriods
 My new means of transportation ~ a walker n wheelchairs :(  
Just me ~ med port walker and all, but I'm alive and MS can bring it on as it chose the wrong women to mess with 

 Yesterday was a very difficult day for me emotionally.  Overwhelmed was on understatement.  Feeling lost, scared, and out of control.  I'm not one that does will with not being in control and right now I'm far from it, being told I HAVE to do something ~ I'm not too cool about either.  I really didn't want to go back on meds, but MS isn't playing fair and I'm out of options.  I NEED to calm this down.  I'm scared not only what the meds will do, but also with what my body isn't able to do now, and I'm terrified that I can't be what I need to be for my family.  I'm not used to needing or asking for help, I'm the one helping ~ when I fell 2 days ago just getting my pants on and yesterday needing Dan to help dress me.....well I'm feeling shattered and feel as I've hit an all time low.  I don't cry often, but yesterday I just couldn't help the tears fall.  To feel so helpless and out of my comfort with the tears just falling, well it's unsettling.  Prayers are much appreciated.  I will get through this, it's not going to be easy, I'm going to have to do some serious sole searching, and except more help.  Once again Life altering and I'll adapt to whatever gets thrown my way.  It's just a blow right now.  Hard to except and hard to believe.  I've always known what MS can do and what I should expect but I never could have believed that it would happen to me.  
What a cliche' isn't?!?'ll never happen to me
Until it does!!

Mother's Day was pretty relaxing.  There wasn't much I could do.  I got out on the patio to sit in the sun and read a book.  So peaceful :)  We went over to my mom's for dinner to not only celebrate Mother's day but also my nephew Tylers 12th bday and my Uncle Tom's bday too.  My niece was there with Baby E and I got some serious baby fix time.  He's doing AMAZING!  He even managed to pee, poop, and throw up on me in a matter of 20's a tryfecta baby!!
I got beautiful colorful daisies 
And Gluten free Delicious cupcakes.  How awesome is that!  Don't they look good