Tuesday, January 27, 2015


Pretty cool fortune I got :)
January 20th ~ International Day of Acceptance!  Kids with special needs are not sick or gross, being differently ~ "abled" doesn't mean that they can't do things, they just do it their own way in their own time.  They only want what everyone else wants...to be accepted.  Here's to honoring all made in their unique way.   WE LOVE YOU DANNY!

 Ms Keren!

 Ms Aleana!
Danny got a package in the mail ~ Ms Annie, his runner, sent him some new medals.  They are on a wonderful pace to achieve their 2015 goals!  Way to GO Team Danny!!
Supporting our Hero ~ Danny my Lil Man!!
Talking about Heros' ~ I'd like to share with you the essay Av wrote.  She's one amazing sister I tell ya.  Man I LOVE these kids!!  Kleenex's ready? 

Here is Av’s complete essay about her hero:
“Some heroes wear capes, mine has a trach. I admire this person because he has been through things that no one should go through in a lifetime. A hero is somebody who is selfless, who is generous in spirit, who tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.”
“My hero is my brother, Danny. He was born with brain damage which makes him “different”. I see him almost everyday and if I didn’t see him that much my life would be a disaster. I can go to him for anything, he will listen to me and I know that he cares. Even though he can’t tell me that he loves me or that he is there for me, I already know that. Nobody needs to tell me that because we have a secret connection that nobody can understand. Other people that have a special needs sibling know what we go through, and it’s not easy. We have to watch our heroes get rushed to the hospital time to time, not knowing what the outcome is going to be. But I can’t imagine how Danny feels.”
“When I go to a competition or to a practice for my sport, I try my best because I know it would make my brother proud. I know that no matter what I do, I will never disappoint my brother because he always believes in me. That’s one more reason why I would do anything for him, and that’s why I love him.”
“When I go to the store with my mom and Danny, everyone stares at him because in other people’s eyes he looks different than themselves. In my eyes he’s the normal one and everyone around us is “different”. When I look at my brother all I think of is how proud I am of him because of how he has overcome so many different things. Also, I am not afraid to share anything about him, I am not embarrassed to talk about him, I’m proud.”
“He has set an imagine in my head of the perfect person. That person is nice, kind, and an amazing friend. That image in my head is my brother because he is the perfect person. I have always had this scenario where a genie will pop out of a magic lamp and grant me three wishes. My first wish would [be] to give the gift of speech to Danny. He deserves it, he is always here for me and I want to be there for him. I wish he could tell me everything, so no matter what I could be there for him through thick and thin.”
“I look up to him, I don’t want to have anyone else as my brother. He is my inspiration, my everything, my hero. Not all heroes wear capes.
Love, Av Osero”
Love indeed…
I know ~ right?  Just wonderful!!  She is becoming a wonderful writer .... not sure where she gets that from, lol.  After sharing her essay on FB and friend of mine asked if it would be ok to share her essay in a blog post as she couldn't just let it go without being noticed by her friends, family, and fellow SN families.  Please stop by HERE to see the wonderful blog post she did.  TEARS all over again.  I have some wonderful kids!!

Last Wednesday we took Danny up to Green Bay to have his 6 month follow up with Dr Edgar, his neurologist, and to have his ITB (Intrathecal Baclofen) pump refilled.  Danny is at a dosage that the meds expire before we can use it all so every 6 months is when it needs to be refilled.  If his dose ever goes up then we might have to go in sooner than the 6 months as we would run out of the med before it expires.   We had a great visit.  Danny has been doing very well on the Neurological end of things so we didn't have to change anything.  We decided to try Botox in multiple areas instead of increasing his Balcofen pump for his increase spasticity in his elbows and knees in hopes to prevent fixed contractures.  
I can't believe that I, Ms photo guru, hadn't gotten a picture of these 2 together before now.
This photo speaks volumes.
We are so VERY LUCKY to have such an amazing Neurologist working with us.  This man has a heart and really truly cares about "his" kiddos.  He takes on children that most doctors will not touch....the most complicated cases.  I admire his knowledge and dedication he has towards trying to give Danny a quality of life.  Bless his heart he really tries with every effort he has to fix these kids.

Well I have to tell you......




All the talking Danny up with how well he was doing when Danny was in the room, totally back fired and I jinxed it ~ As the very next morning all hell broke loose.  Danny had a seizure that lasted about 90 minutes from start to finish.  It was pretty intense at times.  We managed to stay at home, but it was close to calling 911.  Thankfully on his day off (like he gets a day "off") Dr K was with us via phone through most of it.  We exhausted our resources at home so if things didn't start turning around quickly the only option I had left was to call the ambulance as there was no way I could have transported him in his chair to the hospital.  On these occasions it makes caring for Danny at home in a crisis situation alil "easier" with all the equipment and monitors that we have.  We have ALL the stuff the hospital has and I can actually SEE how his body is reacting along with the how he clinically looks on the outside.  Now he wasn't in a full grand mall the entire time ~ from ramping up, to tonic clonic, to coming out of it ~ it was about 90 mins.  I have been asked by many why we didn't call 911 right away.  This is our life and has been for a very long time.....I got this and I've been down the 911 road enough to know what they can do for him.  I tell you they don't do much more then we do here at home, other then really snow him and monitor him.  We then run the risk of him picking up some bug in the hospital or them making him worse (yes it's happened more times then I care to talk about).  I had a nurse here (nothing like breaking the new nurse in right away), he was hooked up on 
every monitor, Dr K was in contact via phone and available to come to the house at my call, bonus Dan IS the first responder, and again this wasn't my first time at the rodeo with seizures.  Danny has 
had them since 5 hours of life.  As long as Danny continued to maintain the numbers on the monitor that we were watching very closely I was comfortable with keeping at home.  Now I also know when to through in the towel, like I said I had exhausted all the resources I had at home to try at stop the seizure and I knew that I couldn't let it go on too much longer without being out of my comfort zone as any more meds would have probably put his system into a crash scenario and I didn't want THAT to happen here at the house if I didn't have to.  His poor lil body did take a hit with working extra hard for that long.  Thankfully with all the rescue meds he was given he ended up sleeping the better part of the 2-3 days afterwards.  Unfortunately his dysautonomia has been triggered since the seizure and we have to monitor him closer for significant temp fluctuations as he dropped to 89.7 at one point and then shot up to 102.9.  His kidneys and secretions are in over drive too, so we are watching that too.  I will post a video as I took them to send to Dr K and Dr Edgar so they could see what I was describing over the phone to them.  Modern technologies ... man what did I do without them?!  This episode has bought him a 48hr video EEG that will be put on and done right here in the home.  I'm sure it will show nothing as, like I said he has been doing great with seizure control except for this one out of the blue BIG Dog.  But I have been wrong before, so we'll just have to see what it shows.  We have put off the botox injections for know until we can get his system back to more of a baseline. 
He unfortunately had yet another BIG seizure Monday morning.  This one only lasting 30 minutes and not as intense as the one from last week, but a nasty seizure none the less.  I see the increase in his seizure medication hasn't done the trick yet.  The 48hr video EEG goes on tomorrow, but I'm sure it won't capture anything new.  I could be wrong....but
Here are the videos of his first seizure

On a good note ~ on Monday Danny got his first professional massage and he LOVED it!  The woman I have been going to for the last few years agreed to come over the house and work with Danny.  How cool is that!!  Not only did Danny love it, I loved getting her input as to what she was feeling in hopes to get a better understanding of what his body is going through.  Very informative and I'm so excited to continue to learn and give Danny some much needed enjoyment in the process.  Best Christmas present EVER!  
Not only does she massage Danny and myself, I started taking Av there too.  With her diving and her constant on the go personality Av has been feeling some pain and soreness.  Again very informative to get input as to what Av's muscles and body is feeling like.   We have decided as a whole, (her 
coaches, us as parents, and Av) to pull Av out of the Platform diving.  We wonder if that wasn't part 
of the source of discomfort for her.  Platform takes a toll on ones body and I'm not too keen on screwing things up for her at such a young age.  I want this to be a fun and learning experience not a grueling and painful one.  So we decided to take a step back with the platform, but spring board diving is in high gear!!  I have to say I think this is going to be her busiest Spring and Summer with diving competitions and camps.  Now lets see if she can make it all the way to Nationals once again.  This years Regionals will be held in Milwaukee, if she qualifies from there we're off to Zones in Iowa (home of the Hawkeyes and her favorite dive camp thus far), and then it's off to Orlando if she qualifies for Nationals there.  
Av had a diving meet at Schroeder Aquatics and boy did she shine!!  She took home 1st place in both the 1M and 3M events.  WAY TO GO !!

Here's a short slideshow of her events at the Dive meet.  We are SO PROUD Of her!!
Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Photo slideshow generated with Smilebox

We received some more unsettling news from the nursing home front.  We are losing another wonderful nurse.  She had been promoted to Case Manager and will no longer be working directly with "patients".  I am so sad as she's been wonderful to work with and is amazing with Danny.  I'm back to finding more nursing hours to fill.  Monday & Tuesday 7-4 and every other Friday 430-830.  People wonder why I don't ask for help as when I do I end up becoming dependent and attached then BAM the floor gets pulled out from underneath me.  I guess I had it too good back in the good 'ol days and I've fallen naive to all the nasty lack of nurses available and lack of good nurses to work with our kiddos.  More disappointment and MORE change.  Oh Hum.....will things ever work out for us again.  Time will tell!

I took Av and my nephew Tyler to Nordic Mountain for a 3 hrs snowboarding lesson and then the rest of the day hitting the hill.  Snowboarding hasn't come as easy to the both of them verses the down hill skiing was.  They both did well and agreed it was challenging but they enjoyed it.  Unfortunately the day was cut short when my nephew fell and hurt his wrist.  Av didn't walk away without getting a few bumps n bruises too.  She woke up the next morning pretty sore from using muscles that weren't used to be used and her one knee cap has a nasty looking bruise on it.  As long as they had fun right?!?

 Av with her instructor Chesley
 Break time :)

Thanks for stopping by and checking on us!  

Sunday, January 11, 2015

Lost in the Moment

Sorry for the lack of posts....it's been a difficult one the last few of weeks.  I have had this post sitting in draft stage for awhile now as I've open the post up and have stared at the screen, as I've found it hard to find words what to say.  Strange for me I know, but I have been known to find myself in a rut at times.  There has been some heartache and disappointments lately due to Health, Loss, Frustrations, and just Lack of time.  Reality is a hard pill to swallow at times, but we also have had some fun and excitement.  I've been over emotional and it's difficult for me to accept as I usually have it all together.  I've been wondering where to start and what ALL the share.  You all know me I'm an open book so.....

We were hit with another road block in nursing as the last nurse that the agency sent to us only lasted here about 1.5 weeks.  It was a HUGE surprise and not the good kind either.  I had thought for sure she was "the one", but I had this feeling it was "too good to be true".  Unfortunately she wasn't able to handle Danny's size, even using the lift was difficult for her.  So once again Danny was stuck hanging out with his mom.  Between taking care of Danny, trying to get a new regimen for MS, and getting ready for the holidays I was overwhelmed.  I say I was frustrated was an understatement.  Due to a "safety" issue they nurse was allowed to leave right away, no notice.  I totally get it, but damn the timing was just "perfect".
I wish I could just throw the towel in all together with nursing.  It's so hard to find "the right one" for us and I'm starting to wonder if it will ever work out for us.  BUT reality is I can NOT do it on my own myself.  Just to say that pisses me off more then you could know.  I am him mother, I am suppose to be there for him and I can't do it.  My body is more tattered then I want to except.  I have found a fatigue and pain within myself that I have NEVER had in my life.  It's just..... disappointing and depressing!
Out of the blue I had a FB friend chime in and ask if I was still looking for nursing as her night nurse was looking to take on a couple of day hours.   Things have fallen into place and I'm happy to say that she started this last Thursday.  She seems to be a good fit, but I am so on pin n needles to see if it all works out.  I really hope it does as she's very nice, very knowledgeable and has a great personality.  Time will tell!  Say an extra prayer for us.  If things do work out I'm just down to Monday 8hr day shift and every other Friday 4hr evening shift that I need to fill and then I'm back to nurses covering 12hr for us and I still do overnite as I'm not comfortable with that yet.  Maybe someday but for now, Danny sleeps, for the most part, during the night ~ doesn't need to be suctioned or repositioned when he's sleeping ~ and I only get up 2-3 times a night right now so that's not too bad.

Rest In Peace!

Dec 1st ~ Ms Moriah, thank you for allowing me to follow your journey's.  I've learned so much from you and your wonderful family.  You are an inspiration to many.  I feel very blessed to have "known" you.  Unfortunately we never got to meet in person, but you have touched my heart in so many ways.  I will miss your stories and your smile.  Fly high sweet Moriah.  Her story can be found HERE

Dec. 16th ~ One of Danny's local best buddy's passed away and I'm still in shock.  Unfortunately Jack was admitted to the hospital the Saturday of Danny's party with pneumonia so he wasn't able to attend.  Then 3 days later Jack was .... GONE.  I'm sure you are running and dancing in the skies sweet Jack.  His mother said it perfectly "Jack was a perfect soul born into an imperfect body" in his obituary.  It's another blow to our Special Needs community and Jack's smile and wonderful personality will always be missed.  His family will continue to be in my thoughts and prayers as they try to find another "new normal" of peace in their lift.  Jack's story can be found HERE

Jan 11 ~ Sweet Ms Madison has left the earthly world and his now playing with the angels above.  I'm sure she was greeted by many, but none the less it's still not easy to hear of another sweet pea passing away.  My heart hurts
The brutal and cold truth to within my life.  The "secret" I hold locked up far within some closet.  Some day, usually very unexpected, this too will be our life.  We are all dying, with each and everyday we are all one day alil closer.  We are ALL terminal, but some leave our hearts sooner then later.  We can have it too "good" with lack of illnesses and complications that allow us to be "normal", but the fact is ~ It WILL be us someday.  I lay awake in bed most nights just wondering if TONITE was the last time I kiss that sweet face, stare in those blue eyes, and stroke that thick hair.  In the morning, I am forever grateful my prayers were answered for one more day.  I have a new fresh look on living each and every moment as if it was your last as the only true GIVENS in this life is you are born and you will die, and you will never know when all you will have is the memories left.  Hug and kiss you kids tight, embrace them, and enjoy each and every moment you have as there are no guarantees for a tomorrow.

"Let It GO" ~ I listened....I mean I really listened to the lyrics to this song.  And it was an Ah HA moment!  2014 wasn't the easiest of years and I hope for a better 2015.  It was a difficult holiday, but one that was easier also.  I had to finally walk away from my family drama.  It was evident that lifestyles, values, and morals were very different then some of my family.  I am too old for the BS that came with it and I will not fake it anymore.  Why should I be putting on a front to make others happy.  What does that show my kids....it's ok to be treated like shit as long as it comes from family.  Well I wouldn't take shit from a stranger or even a friend for that matter and I'm sure not taking it from my so called "family".  They made their beds and now they will have to live in them. I have dealt with it long enough.  I have unplugged from the situation before it becomes really ugly.  I know because I walked away I am the "Bitch" and I'm ok with that.  I find it amusing instead of taking responsibility for ones actions they chose to be the victim ALWAYS.  Someone is always plotting against them never acknowledging what they have done.  They don't know my life or chose to want to know it, they just to say things they think they know.  News flash ~ get your facts straight and stop trying to screw everyone over (including your own "family").  I've have learned nothing will make them happy, when they are never truly happy with themselves.  It's about time someone finally shows them there are consequences for their actions and no one can bail/help them out of this situation.  It will never BE BETTER.  We will never see eye to eye and I've agreed to disagree and walk away.  
With that comes another set of change.  Holidays and celebrations will never be the same.  I have my life, they will have theirs and I will work at them no coming together.  I will be cordial when I have too, for my mothers sake and she is caught up in the middle, but for the most part their will be 2 different identities from here on out.  So we are starting new holiday traditions, but it's still alil hard, even if it's for the better, to see the old ones go.  I knew what I had growing up as a kid and I see that my kids will not have the same memories, which is ok as we have some and will continue to make even more AMAZING memories...it's just different.

I was able to stop by the dog rescue, New Pawsibilites, where we got Sully from to drop off all of Danny's party donations.  They were very appreciative for all the goodies and even enjoyed the photos I left them with Danny, Sully and all the donations.  Thank you to all that helped out! 

I started my new MS med named Aubagio.  It's a daily pill that I have to take only once a day.  That alone is very enticing ~ no daily shots or hospital infusions for disease modifying drugs BUT I know how nasty these MS drugs can be.  This is a very new drug and I have to say I'm not really jumping for joy with the convenience.  My concern is what is this going to do to my system down the road.  I haven't seen or heard of a disease modifying drug that doesn't have significant issues down the road.  This is all too new and I know they don't know what all to look for or what is going to happen years down the road while being on the drug.  My first side effect I can't say I'm too impressed with.  The first 15 days I have been on it, I've gained 10 lbs.  Well isn't the special!!  Of course on my FB support group for the med I have found most of them have all lost weight on it, NOT FAIR!  It's all water weight so I'm sure it will be easier to lose, but I really didn't need this.  I've worked very hard at not only losing weight (with more that I need to drop, even before this) but I managed to maintain pretty good eating habits over the holidays.  I know I'm not a # that shows on the scale, but it does bruise ones ego a bit when that # inclines.  I have also started to go to have acupuncture along with Chiropractic adjustments done twice a month.  I have found that they are helping :)  I am working on starting a new line of "holistic" vitamins to see how my system reacts with those.  That to so far so good.  Not only does my house smell with essential oils but I've been learning how to use them for more "holistic" way too.  It's amazing what you can do with them.  I'm more excited with all of that then I am to be on this med.  I have another Dr appt with my neuro this week and I'll be talking more in depth with her on my questions and concerns.  Prayers appreciated!!

Construction site of the new building Dan is in the works with ~ a multi tenant building.  It will house 3 business' and is right next door to our Oshkosh Laundry mat.  We already have a prospective renters in 2 of the 3 spots.  YAY!  If things run smoothly I believe it should be up and running by early to mid summer.

Avrianna went to a dive camp the last week in December, to Ripfest in Indiana.  

We surprised her for one of her Christmas presents.  She had a great time and even learned a couple new dives.  One of the girls she hung out with while there this summer was there this winter too, so that was nice she had a familiar face.  Dan drove her down there no the 28th, I had planned too, but with the nurse leaving it made it alil difficult.  I was able to go down there to pick her up, and we brought Danny along too.  He did great on the 7hr long ride in the van, which meant he was in his chair longer then I'd like, but he loves traveling for the most part.  
He was very happy to see his sister!!  

She caught a cold while at camp and wasn't able to preform in the meet that they do for the last day to show off what they have all learned from the week, which I'm sure she was pretty disappointed about.  We stayed to watch her friends dive and then we were back on the road, but we didn't head home right away.
We stopped in Elwood, IN and surprised Danny's runner Annie.  It's was a wonderful surprise and it was so great to see them all again. We even had some of Annie's family come over to visit once they found out Danny was in town.  It was great!

All this is Danny's for one over nite stay... he doesn't pack lightly.  High Maintenance I tell ya
 Pack and ready to hit the road
 We been saying that we've wanted to stop at the Mars Cheese Castle
 So we finally did :)

 Annie with her son Tarren ~ He helped my pull off the surprise.  I'm so happy we were able to meet him.  Last time we met Annie, he just left for his base training into the Air Force.  He was on leave this time and was going back the next day.  Thank you for you help and for you services to our country!!
 Annie's family
 Annies son sitting next to Dan
 Danny so happy to be with Annie

 I love how in Awe she seems that he is really there :)

 Until next time our friends!!
 It was a quiet ride home ~ shhhhhh

Dan had the opportunity to go to the green Bay Packer's play off home game against the Dallas Cowboys. They called it the Ice Bowl 2, but the weather wasn't too bad with temps in the 20's and no snow, sleet, or rain of any kind.  But with that being said we would rather watch the game in comforts and warmth of home :)

We are off to play Seattle as the Packers won! Woot Woot ~ Superbowl bound!!

So we'll see what 2015 has in store for the Osero's.  I hope for better things!  Thanks for stopping by and following our journeys.  I am forever grateful for your support.  Here's to a healthy and safe 2015