Friday, November 30, 2012

Nothing stays the same for Long.........

My last post was so exciting to see Danny at school starting his new education adventures........BUT that was the first and ONLY day he was at school.  As I have since cancelled ALL school now, even the home bound services. Since he went to school Danny went ill with a nasty virus along with a UTI that just wiped him and US out.  I think he's finally over this virus, it has been weeks...he tends to over exaggerate on EVERYTHING!!  The goo has subsided a lot but the poo is still running through :(  Gotta LOVE antibiotics.  On top of him being sick he is having significant bouts of pain.  Pain Meds have been his best friend :(  There are many "theories" as to why he is in pain, but once again nothing concrete that is jumping out at us.  I'm feeling so helpless.  We've done X rays, labs, and exams and there is nothing showing to help me "Fix" it.  I can only give him the band aid method and give him pain meds.  My hope is once January comes around he will feel much better after his surgeries, as our theories both pertain to what surgeries he is having. His rods are getting loose which allows them to move around sliding side to side on the bones and I'm sure that doesn't feel awesome. Then his puck for the baclofen pump isn't sitting "flat" at the moment (he's always had a "floating" puck as they call it cuz it's not suppose to really move around, but this is Danny we are talking about so things DO what they are not suppose to do) and it's alil lower then normal sitting on his pelvis bone, again not feeling the best I'm sure.

First surgery is on Jan 8th ~Danny will be going to have his VEPTR rods removed, then they will be fusing his back, and adding stationary rods along both sides of his spine.  I have to say I'm We are very nervous for this surgery.  The back fusion will be the longest AND most the difficult surgery Danny has had to date.  The Surgery will be anywhere from 6-9 hours long and he WILL loose a significant amount of blood, not to mention he will have an incision that will run from the base of his neck ALL THE WAY DOWN to his tail bone.  Ok I'm feeling ill already..... BLECH!!  Then on the 11th Danny will be going under again to have his Baclofen pump replaced.  The pump needs to be removed and replaced as the battery as reached it's life time.  So as he is recovering from this HUGE back surgery 3 days later they will be opening up his belly, AHHHHH!!!  Unfortunately they can not do both surgeries at the same's too risky.  With Danny's dysautonomia wrecking havoc on his system after surgeries, and when he's in Pain I can only imagine this is going to be a LONG haul for us in the hospital and outpatient to get his system to settle down again.  I will keep you all posted on the surgeries and recovery process, but can you start praying now....we could use all the help we can get.  Once this is over with then we really don't need to be "followed" by Othro anymore.  Kinda weird as Ortho has been a HUGE part in Danny's life and then poof no need for them anymore.  As the back will be fused which means he will not need any more surgeries for his scoliosis and his torso will no longer grow anymore.  We already had his right hip removed so that pain is gone and no more issues/surgeries there.  Now Danny, we don't need to give a reason for us to play with Ortho.

This brings me to our next decision....we are going to take a few days vacation to Dallas, TX over Winter break,before the surgeries.  Why Dallas you ask?  Cuz it's warmer then here and we've never been there, it's as simple as that.  Plus the drive is about 10hrs shy of the drive we take when we go to our place in Florida.   So Dallas, Tx watch out here we come.  We already have in the works to meet up with some of our SN families while on the road.  I Can't wait!!  It's so nice to be able to see these people in person as we have such a closeness and bond thru the internet.  Thanks to this blog and FB I've become Best friends with so many people ..... and I've never met them in person.   It's crazy how you can have a relationship with a "stranger" better then you can with people whom are right in front of you.  I'm really excited to go as we haven't had the RV out on a trip for over a year n a half.  We've had to cancel the last few trips we've planned do to illnesses.  I hope n pray that Danny continues on the upward swing as it would so great to get in a nice trip before all the surgery chaos the beginning of the year.   There really isn't too much work required in going as we are staying in the RV the whole time so pack it up and GO, GO, GO!!  We do have to clear out more space then normal for all the Christmas gifts as we will open up our gifts on Christmas day just like everyone else :)  It will be very interesting, stay tuned!!  I have all the Christmas shopping done and it's all wrapped so I will be able to pace myself in getting the RV packed up and ready to hit the road.

The house is ready for the holiday celebrations.  Now "if" I was thinking I could have planned this out differently, as we won't even be here for Christmas so why decorate.  Cuz It's Danny's 9th Birthday party coming up and we are going to celebrate in true Danny style once again.  I'm so excited as last year we were in the hospital when we were suppose to be having his party which means it was cancelled.  We are WAY OVER DUE with hooking up with Danny's friends and the excitement is in the air to celebrate another year we got to make wonderful memories with Danny.  We hope in pray that there will be MANY more years to celebrate that :)

I have been keeping myself busy with all the holiday excitement in addition to finding more help with living with MS and Fibromyalgia.  The last 4 yrs I've been telling myself that I won't let MS effect me, when in reality MS is apart of me now and I need to figure out how we can live together.  Being in denial and having blinders on does me no good.  I know the saying rings in my head that I have MS but MS will not have ME, well there is some truth to it, but MS does have me whether I like it or not.  It's a nasty disease that I really have NO CONTROL of.  I can try to live life like nothing is wrong, but I'd be lieing to myself, I have been lieing to myself.  I am getting sicker and I need to get up and FIGHT LIKE A GIRL!!  I'm losing so much strength and abilities and it's very scary.  Some of which I was totally unaware of as I was over compensating in other areas to "hide" my weaknesses.  I started going to Manual therapy (which is a very slow motion Range of Motion along with using pressure points to help with my range and movement) in addition to massage and acupuncture.  While in Manual therapy she noticed a lot of things that again I was unaware of.  She recommended I go to another therapist that would show me some balance exercising on a ball, when I was on the ball I noticed that when you take my upper body strength away my legs were MOOSH...I couldn't even pull myself into a standing position from sitting.  WOW ~ I was so upset and scared.  I realized that while trying to do stairs, or getting up from a chair, I was using my upper body to assist me more then I should be.  SIGH  Most of my weakness is stemming from nerve damage not so much muscle.  So when the nerves don't work right the muscles tend to not work right.  My Muscles are bad because Somewhere in the nerve connection to my legs and the brain there is a message that is not getting there correctly.  My right side is mostly effected, but however both legs are weak.  I am frightened that with the weakness and the spasms I am having the ability for me to drive (as most of issues again is on the right) will be harder, not to mention just to walk.  I have to work on trying to get the message and my movement awareness from one place to my brain better.  After my findings on the ball they referred me to a PT.  PT is different then what I had thought it was going to I can't really work on strengthening activities as it's painful due to the nerve damage so I am working mostly on movement awareness.  I guess It's been found if you push a MS patient through the pain and give them more strengthening activities they are more likely to revert the abilities they do have into more disabilities.  I want to be able to maintain my abilities the longest I can.  I also started taking a class called Feldenkrais Method which is a great "exercise" to help maintain my mobility and movement awareness.  So I will be going to Manual therapy & PT at NeuroScience, and doing the Flendenkrais Method at Anu Well being in Downtown Neenah all once a week.  Then I am still doing acupuncture and massage every other week.  Which means my already crazy schedule just got CRAZIER, but I have to this for ME.  So I can be around for Dan, Avrianna, and Danny as long as I can....if I don't take care of myself then I'm no good to anyone!

Thanks for checking up on us!  Can you believe it's going to be December tomorrow.  WOW where did 2012 go?

Tuesday, November 13, 2012

First Day AT School 11-12-12

Danny had a Fantastic first day at school.  I on the other hand was a nervous wreck.  Don't worry I'll get over it, but you have to remember this is his first time learning AT school.  I know he will love the interaction but I just hope he stays healthy.  I'm giving it a try, baby steps here people as this momma can't take much more.  Why do they have to grow up??
Ms Gail was the first to take him to school on his "first" day.  She followed me in Danny's van. That alone is a HUGE step for me as I'm the only one that has EVER driven him around (or at least me in the vehicle) 
Look my Lil boy is on his way to school.  EEEPPP, hold it together MOM!!
Danny ready to go inside.  Of course on his first day it's the coldest day of the year thus far AND it's snowing!!  Can you believe that?!?

Danny in his 3rd grade class.  All is quiet in the classroom as the children all ran to the bathroom to wash their hands when we got there.  Awe, So nice.  I'm just humbled by the interest all his friends have in him.
It's Read Aloud time.  Danny has a spot right along with his peers.  We He Learned about Veterans and what Veterans day is all about.  Ms Gail and I had to chuckle as we learned alot while listening.  Did you know that Veterans Day is celebrated on the last day of WWI?  I did not!  Did you know the battle field was done amongst poppy field hence why we buy poppies to remember the Veterans?  I also did NOT know that.  Maybe I should go back to school, and be able to absorb what I've lost. 
Mr Kamenick is Danny teacher.  I can't wait to see Danny's reaction/ response as he tends to like Males more.  Guess he's gotten sick of us women all the time.  Mr Kamenick is VERY tall and surrounded by all these 3rd Graders he looks like a gentle giant, lol.  After read aloud we had some Q&A time about Danny.  Each student and even the teacher had come up with a question that they would like to know about Danny.  It was so cute to see what some of the kids wanted to know.  We weren't able to finish all the questions and I think their will be even more as time goes by.  I gave me an idea to bring in some of the things Danny needs/used so the kids can feel and see what makes Danny tick.  I just LOVE listening to all the questions they have and even better....I LOVE talking about him.  Danny had his eyes closed most of read aloud and Q&A time,  I'm not sure if he was tired, scared, or if the lights were too bright.  Could be a alil bit of all of everything, but all n all I think he did good.
Off to Art class with his special Ed teacher Mrs Bowers.   Where they did tissue paper fish.  It's was a learning curve for us too on what we need to bring for him and what the school has for him to use.  
 Here we tried to put his sunglasses on him to see if the lights were what was bothering him.  Yeap he's the cool kid in the school.  I think I'm going to bring a visored hat to see if that helps, but I'm not sure if the school will allow hats.  We'll see!
 Working VERY Hard!!
 Once we got him into his special ed room and dimmed the lights he was alert and eye were open!!  They first attempted to do the state wide testing on Danny, but it was useless.  There was NO WAY Danny was going to be able to answer the questions set out infront of him.  Here is were the "system" and I don't see eye to eye.  They don't see the children individually but as a whole.....I know the teachers are only doing what they are told, but really?  Thankfully after 3 questions I spoke up and they agreed it was senseless to go on any further.  So More Object stories......Danny LOVES to be read too :)

 Danny had an awesome Day for his First Day of School.  I'm so proud of him and how far his come!

This year for his birthday I decided to do something alil different.  I set up an "event" for everyone n anyone to send him a birthday message/card in the mail.  Like I said he LOVES for us to read to him.  I'm Calling it a Birthday Card Shower.  Here is what I have on FB for his event.
As most of you guys know Danny has overcome and still faces many medical challenges during his short time

 here. Danny has his 9th Birthday coming up on Dec 23rd. I have people always asking what can I "get" him. He 

LOVES for us to read to him and when I saw this idea from a FB friend in which they had a card shower for her

 son, I thought what a wonderful idea. I am asking everyone that can to please drop a card, or a piece of paper

 with a Happy Birthday Message or maybe even have your children color a pict
ure for him. I ask you to take the

 time and help me celebrate Danny's B-day by sending a birthday wish through the mail. Thank You so much in

 advance for your thoughtfulness, you all are amazing! Feel free to send them whenever before Dec 23rd and I 

will save them all up for his BIG day ♥

If you know of anyone that would be interested .... please share :)  Our Address is 2686 Towerview Dr Neenah, 

WI 54956

The More the Merrier!

Please feel free to follow Danny on his FB page Touched By Danny's Life or go to our family blog at to see what we are all up too.

Wednesday, November 7, 2012

Stepping out of my Comfort Zone & catching up

It's been a rough time since being home, Danny still hasn't been able to really bounce back.  We've been in and out of Dr Kaspers office with no real reason as to why Danny is : spiking fevers, having severe Puff dependency, retching, GI bleed, and significant edema.  This weekend he scared to bajeezus out of me and his nurse when he had an apnea spell while retching.  It was THE REAL DEAL.  I haven't seen his color change from red, to purple, to blue, to grey that fast ever, thankfully I was home to help resuscitate him.  I wish I never have to see that again, but if I know my sassy son he likes to keep thing exciting, keep me on my toes and keep things real.  


Today we spent most of the morning in the Dr Office for blood work, xrays, and a once over AGAIN and the only thing that has stood out is his potassium levels were alil low.  Hmmmmm, that's it?  I can give him 1/2 a smashed banana in his diet again and that should fix that.  I kinda wish they would find something as to why........ then I don't have to think maybe this is all do to his brain damage progression.


When Nanny is around she always can make him feel better :)  He LOVES his Nanny

We even went as far as to have a Cardiologist take a look at Danny and do an ECHO.  I'm happy to say his ticker is working properly and isn't showing any signs of issues with the added fluid that Danny is retaining.


Seeing nothing is "wrong" I decided to go out of my comfort zone and during Danny's IEP I've elected to try and have Danny GO IN to school for 2hrs 2days a week.  He's nurse and sometimes myself will be with him so I feel alil better about it, BUT my anxiety is HIGH and I'm freaking out alil.  Maybe what I think is good for him, may not.  Maybe he'll do great and school.  I know he will love all the kids there, so I'm going to give it a try and see how he does.  If it doesn't work at least I know and we can right it off, but if it does (well he's been know to prove me wrong at times, heehee).  He won't be there alot, we are taking baby steps.  MOM needs baby steps.  If he is well enough I figure he'll be there about 10 times before the Winter break and then he'll be off from Winter break till probably the beginning of Feb as Danny has surgery scheduled for the beginning of Jan.  He is still scheduled to have his Back fused along with his Baclofen pump being replaced, but I'm weighing all the odds to see if we should do the fusion or not.  There is a balance right now to the pros n cons so here I sit at a stand still.  I will keep you posted on what we decide.

Here's some pictures to Halloween 2012 ~
Marty the dolka dotted circus Clown in Madagascar 3

 Halloween Morning we were in Dr Kasper's office so of course Danny had to dress up :)  Everyone LOVED his costume
 I was class Mom for Avrianna's Class Halloween Party.  As they get older the easier the parties are.  Some snacks and a Movie and they were very content.  I'm thinking this will be it for class parties n field trips so I'm trying to make as many as I can. :)
Here's MEDUSA!!
 Avrianna continues to do great in school.  She decided that on top of her private Piano lessons that this year she would play the Viola in the school program.  Well last week she started to wonder if maybe the Trumpet (following in her father's footsteps) would be more "fun".  She will be doing both the viola n trumpet along with the Piano for the next few weeks to see which one of the school programs (orchestra vs band) would she prefer to do.  I'll be interested to see what one see picks.  Avrianna is still in the Fox Valley Dive Team and LOVES LOVES LOVES it.  I'm amazed at what she can do on off the diving board!!  I think that diving is going to take her places. We got very lucky that she has a phenomenal coach, that has a LOVE for the sport and works well with kids.  Avrianna had her annual exam and is appropriate with her growth as she's  40% for her weight and 60% for her height.  Have to chuckle at Lil Ms achiever as when she was born (8 wks premature and with a blood disorder) the prognosis of her life's path was NO WHERE near what she's become.  She was supposes to be very delayed academically and physically.  YOU GO GIRL!!  Avrianna has also taken a liking to going up North with her father and shooting targets with her gun.  A regular ol' sharp shooter we have.  It's so great that they have this father daughter "bond" that they enjoy doing together.

I'm going through some "changes", hopefully for the better.  I'm working very hard at "living" a better life, with more of a "natural" aspect.  Of course the big one is trying to eat better, but I'm really trying to improve my MS and Fibromyalgia symptoms.  I've been trying Acupuncture, massage, essential oils, eating better, meditation and therapy.  I've gotten a real reality check as to how weak I'm becoming while in therapy and I'm trying with all I have to fight this fight.  At least I'm trying and I won't be able look back as say....I wish I would have tried that ... the dreaded what if's.  As long as I can I will continue to try new things in hopes it helps.  Maybe I will be able to see a cure for this ugly disease in my life time, but until then I have to give it my all.
I found myself, after Danny's lil apnea episode, reflecting once again.  And I needed some tattoo therapy!!
What a wonderful job!!  In memory of our Special Needs ^angels^.  They are many more angels out there that I've had the privileged to follow, but the 7 stars are to Honor the "special" ones that I was close to, emotionally.  I will continue to add stars to honor wonderful children that were very brave in the short time they were here on earth.  Lilianna, Jayden, Emily, Alex, Chase, Kylee, and Mattman you will Forever be in my heart and Always on my mind.  I chose Dragonflies as they symbolize so much about about freedom and life after death.  Here is a wonderful Dragonfly LINK to check out the dragonfly.

This last weekend Bugsy and Teddy left the Osero household and are now living in Mrs Sachs 1st grade room at Lakeview Elementary.  They are so loved there and they have SO MUCH attention.  The great thing is Avrianna is still able to visit them :)  I think she will see them more now that they are at school then when they were here, as Avrianna's schedule is just crazy busy.  I'm so glad we were able to find them a great place.  They now have a Step Guinea pig to play with too, Mr Snickers.  Mr Snickers has been in Mrs Sachs' class for many years along with his Brother Mr Coco.  At the ripe ol age of 7 Mr Coco passed away last school year.   That makes Snickers almost thats unheard of for guinea pigs.  I think it's fair to say Bugsy n Teddy are in Good hands.  Thanks to Mrs Sachs' ~ she's also been very nice to Avrianna with letting her visit them :)

Thanks for checking up on us!!  Good luck to all you Hunters out there ~ Wishing you a wonderful 2012 Hunt!