9th Birthday Celebration

There are really no words needed on this post :)  Each and every year I try and host a Birthday party to celebrate another year we get to spend with Danny by having his friends and their families over.  Some years unfortunately (we didn't have a party for 3 of his birthday's) we did have cancel do to illness' but weather has NEVER stopped these families from coming and let me tell you there has been more bad weather during our parties then good.  If my memory is correct 4 out of the 6 parties were being held in a blizzard.  It's an amazing time!!

This years theme was the movie "UP"

Danny's cake that I made ~ I did cheat this year and bought the fondant pieces to put on the cake. 

 Danny and his BFF Griffin.....

 BFF Ryan ~ that smile always MAKES my day :)

 Looky here we have the 3 Stooges

 He's Here He's HERE!!!  Every year we've had a party Santa has come to each and EVERY ONE.  I found out that this year he even missed his granddaughters party to be here with us.  God I LOVE Santa!  I don't know what we'd do if he wasn't here to help us celebrate.

 Santa's Little Helper :)

 Every year I go out and get alil something for Santa to give out at Danny's party

After all the the gifts are handed out Santa sticks around for everyone to get a family picture with him 

 The Whole '12 9th Birthday crew ~
Nicholas, Jeromy, Griffin, Santa, Ryan, Danny, Avrianna, Ila, Raymond, Payton, Emerson, Charlie, Noah, Sarah, Brayden, and Gabriel.  And we know that our ^angels^ up above were here to help celebrate Danny's special day too.

After all the pictures and gifts, we put in the Movie "UP" and fed our faces.  We had a "pot luck" style dinner as I made Hot Beef, shredded Turkey, and Hot Ham then the families made a dish to pass to go with it.
In Lieu of gifts for Danny we chose a special organization to donate items to.  This year we chose "The Princess Kylee Project" .  The program was started by a wonderful mom after her Lil Princess, Kylee, passed away.  The project donated to the local hospitals items to the patient and family member to help them feel alil more comfortable with their stay.  The items range from health n beauty  products, jammies, toys, writing materials, and gift cards.  Feel free to go to the website.

Happy Birthday Lil Man!!  Hope you had an amazing party.

 Thanks again Santa for another wonderful birthday party

 I think he enjoyed his party........Don't you!

Please remember if you interested in participating in Danny's Birthday Card Shower.......please send him a card at 2686 Towerview Dr Neenah, WI  54956 and we are going to open all his cards up on his birthday on Dec 23rd.

**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 picture 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 :)
The More the Merrier! **

Emotional Right ~ it's a ride

I've had this blog post started for about 3 weeks now, but I've just been so busy lately I haven't been able to complete it. You know its bad when Dan is starting to give me grief because its not updated yet. LOL

My mind is swimming in a pool of emotions and thoughts.  As always I find they leave easier when I get them out in writing. So you would of thought I would have stepped it up to get it finished.  Even Danny's Rehab Dr recommends to get it all out on paper that way it's there in black n white and I don't have to continue to "think" about. I guess I'm on overload which means I'm overwhelmed and really not sure where to begin or finish in this case.   It's really awful when you can NOT sleep as your mind is just racing in every which direction.  I can be physically and emotionally exhausted but my brain just won't shut off, I find I am yelling and screaming with myself to GO TO BED....Turn it OFF!

I thought I was once again in a MS rut, but through many Dr appts they believe I am having a Fibromyalgia flair up.  I have never had one before and I've never felt this way before.... it's awful.  I was/am excited to start the new avenues of doing Feldenkrais and all the therapies of OT n PT to improve my awareness n balance, but with this being said I'm very disappointed that I hurt THIS bad. Right now I feel as if it's all making me worse and I'm down right frustrated.  I wasn't sure if I hurt because doing it and my body needs to adjust, doing it too much, doing it wrong, shouldn't be doing it,  ~ again this is all new so I will give it time....but was so hoping that my body n mind was going to be as excited as I am.
I'm very saddened, hell I'm angry that I can't even bake Christmas cookies with my family without hurting like crazy.  It's just not fair.....I could see hurting like this if I was lifting weights, running a marathon, something crazy like that....not just doing everyday stuff like walking, or holding onto a basket of clothes, or lifting my arms to brush my hair.
Is this really what I'm going to endure the rest of my life??
Am I going to hurt like this everyday?? Man it's going to be a long one if that's the case.  I'm trying some new meds n things to find some relief, but I really haven't seen to much of an improvement plus that to comes with it's own set of issues. Feeing run down and tired is one thing, but to hurt all day, every day, with every move ~ it just pisses me off.  I'm so upset that I can't be the woman I want to/use to be.  My biggest hurdle to is pace myself but I'm not very good at pacing myself or sitting back on the sidelines.  So this will be a BIG adjustment for me.  I am trying :(  I am going to really enjoy our family trip to Dallas as I hope then I will be able to sit back and relax in the RV and see if my body improves with some much needed down time.
A person can hope!?!
I'm sure the added stress of Danny's upcoming surgeries is not helping either.  We've done many pre-op appts, first was with the Orthopedic surgeon to go over any questions n concerns about the back fusion.  Let me tell you I talked and talked and talked till I was blue in the face with the Dr and also with Palliative Care and the Rehab/Special Needs Dr to make sure I got all of the info I NEEDED to make sure I am making the right decision.  What ever happens good, bad or indifferent I can honestly say YES I believe the fusion is the best route to go for Danny.  BUT it still doesn't make it an easy decision.  Like I told the Dr's I wish it was February and I can look back and say it's over with and I'm glad it's all OVER WITH.  In due time, In due time.  Today's appts were with the Anesthesia team and the NeuroSurgeon that will be doing his Baclofen pump replacement a 3 days after the back fusion.  Unfortunately the two surgeries can not be done together, but believe me I tried my best to push for it.  I am very grateful that I was able to get the Dr's to do a med change and then admit him the nite before surgery for observation as we need to be at the hospital at 6am for this surgery to start at 7:30am.  With those early times I don't think I would be able to get much sleep as we live about 1.5hrs away (if traffic and weather are good) and I need to do all his respiratory treatments before we leave as I'm sure he won't be getting Mr Jiggles any time soon after the back fusion.  He really needs to be "cleaned" out before a surgery of this length and magnitude.  I could go the nite before and stay at the Ronald McDonald house or a Hotel, but then I would need to bring ALL of his machines along with.  I would be doing all the moving myself as Dan is planning on coming later in the AM after Avrianna goes to school.  Which means I would have to leave Danny unattended to get ALL his machines ie: Mr jiggles, vent, cough assist, neb, feeding pump, along with our bags in and then out of the room.  I would do it if I had to but they both are not the best options for us, so them being able to admit him the nite before has made me a VERY happy Momma.  One less thing I have to worry about, lord knows I have enough to worry about.

Two Sunday's ago Dan, myself, and Avrianna started going to a new church.  I have to stay it's very nice and not to mention it's alot closer, YAY!  I've been with our "old" church forever (I was baptized there, got married there, and the kids were baptized there), but there is alot going on there that I'm not impressed with so.....we switched.  I'm not BIG on the church thing as most of you know, but for Avrianna's sake I will go.  I would like her to get educated on religion so she can make her own choices.   I owe that to her, and who knows.....maybe....let's just say I will keep an open mind about it.

Avrianna is now a certified Babysitter.  She took an all day class a few weeks ago at the YMCA and she is very eager to start her "career".  She already got to watch one lil girl and she just loved it.  She's even more excited I started a FB page for her babysitting.  This week we had Avrianna's Christmas concert and she was in a speaking part of the play.  She did fantastic!  Spoke very clear and loud, she wasn't scared on bit.  Looks like she got the beginnings of being in Drama.

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 time.....it'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 be...as 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?

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

 oserofamily.blogspot.com to see what we are all up too.

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.  

**SIGH**

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.

**BLECH**

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.

**PHEW**

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 8....wow 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!

Danny and I were discharged from CHOW on the 15th about a week n a half ago. He's been doing pretty good since we've been home. I'm not sure what might be going on with him NOW as he's slept the last 2 days n nights straight. I have to wonder if he's starting to brew something up again. I sure hope not! His right ear is giving him some grief once again, maybe it's something as simple as that.....or maybe not. How frustrating when he can't tell me what's wrong....I just have to figure it out.

**SIGH**

Hitting the road!!

He's in there........Where's Danny?!  That's how we roll :)



The Neurologist's in CHOW seemed to be impressed with Danny's EEG. Even going off most of the seizure meds he was admitted with, the EEG only regstered Three 15 second seizures the whole 4 days he had it on. That's not too say what was going on was not deep brain seizures as an EEG can not register those. BUT, I do find it strange that when he was on all 8 seizure meds he continued to have these "episodes", but now only on 2 seizure meds I really haven't seen a thing. Danny did start a dysautonomia med while in the hospital and it makes me wonder if what was going on was really dysautonomia not seizures.
We were able to capture a nice picture of Danny for his 3rd grade school picture.  What do you think? Not too shabby :)





Once we got home we had a visitor come over.  Isn't she a doll!!  Danny just loves her.  I think he would make a great babysitter, heehee

On the 24th my baby girl turned 10...can you believe it, 10! Where has the time gone? I can't believe how fast she's growing up.  Dan and I made her the bed she's been wanting.  I think she likes it as she's always on it!  This comes from the tree the Dan cut down Up North, to the lumber we cut and plained, to this beautiful bed.  Now that's homemade!  We also got her a phone, that was a big step for me.  We are currently the "coolest" parents ever.....for the moment.  LOL !  Tonight we have 6 of her girls friends sleeping over.  First I'm going to feed them and pump them with cake n ice cream then ship them off to the skating rink to burn off all the sugar.  In hopes they will be exhaused and crash when they get back.

Calm, Cool, and Collected

I was able to get out of the hospital for 24hrs yesterday. WOW!! I have to tell you it was very difficult to walk out the door knowing I was going to be gone for an extended amount of time. I have only been away from Danny over nite only 2 other times since he had left the NICU, many years ago. I had a heavy heart, but I knew he would be taken care of in the PICU plus he had a "bonus" the "Eyes in the sky", a name they use for the video EEG guys, who were also watching & listening in on him. Once I got home we went to Avrianna's conferences and I have to say I'm pretty impressed with her. She is in the faster math class this quarter and she's gotten amazing grades so far this year. The teacher also says she's been a big helper in class .... I'm so proud of her. Avrianna is on the right track for her last year of elemtary and I hope that she continues to do well and enjoy school. After hitting the book fair I took Avrianna out for a lil mom n me time. We both got our hair cut and then off to have our nails done. YAY ~ how fun and relaxing was that!! Both of us had a Halloween theme painted on our nails...great minds think alike :) We were all ready for our exciting night of dinner and a show. We picked up Dan and one of Avrianna's friends, Lauren, and headed out for dinner at Victoria's. HOLY MOLY ~ I think I could have fed all 4 of us on one of the meals. Needless to say they have ALOT of left overs to eat up. We walked across the street, literally, to the PAC in downtown appleton for The Blue Man Group performance. It was amazing!! We got to sit in the "box" seats which I've never done before and the view was spectacular. We got to sit in "real" chairs with no one infront of us or behind....we definitly felt special. Being up 4 floors and looking over the balcony, I don't think you could get a better view. I had bought those tickets with the mind set we'd have more room for Danny's wheelchair.... I'm sad he wasn't able to come with but there will be other shows we'll get him too. Being able to sleep in my own bed was........Heaven! Even though Danny wasn't in the house it's weird how I found myself counting the "breathes" that the vent would normally breathe at and I could still hear that beeping from the heart rate monitors that is constantly on when you're in the PICU. Amazing how things like that are burnt into your brain. Once I fell asleep that was it...I was OUT cold. I even slept in which I can't remember that the last time I slept in that long before. Ahhhh, rested and ready to take on the day. Once I got ready, I grabbed my coffee, and was back on the road to head back down to Danny. Even though it was difficult for me to leave, it was great to get out and refresh my batteries. Dan has been a busy guy since I've been gone. But thankfully our schedule was not too busy, so if we were to be inpatient, really this was a good time. Last night he pulled an all niter at the laundry so he could get the Oshkosh store ready for another 80# washing machine to be installed. Almost everything is ready and I beleive he was going to try and install the new washer tonight. Avrianna was staying at her friends house this weekend seeing Dan will be busy at night and I really don't feel comfortable leaving her home alone at night yet, plus Dan has a full day Saturday with training and some firemans get together. Once I got back to CHOW I was pleasantly surprised to see Danny's eyes open and him watching tv. He's much more alert!! It's great to see!! The last few weeks he's slept for more of the days n nites then he's been awake. I hope I can contribute this alertness to the decrease in all his seizure meds. I LOVE it! Today is going to be more of a sit and watch day as the Neurologist doesn't want to take off anymore meds. The doctor said that Danny's brain is liking not having so many meds on board, BUT some of the spikes are getting pretty intense so they want to sit and watch what happens. He had one "small" episode this afternoon so I'm happy they got to see some activity. Now to see if anything else shows up. I found the BEST seizure control I found is..........an EEG. I've been praying for days that these "seizures" stop and NOW I'm praying that he has them as since the EEG I have not seen a thing. Who does that? Prays for seizures? Well a momma that wants answers and help for her son. Thankfully the eys in the sky have said that even though I haven't seen much clinically going on, his brain is showing things. I can't wait to sit down with them and see what they are talking about. When we came into hospital Danny was on 6 different seizure meds along with 2 other rescue meds. He is now only on 3 scheduled ones right now and the word is they would like to see another one off, for sure. I'm not totally sure what the plan is for, if it was to get the quantity of meds down or get him completely off them. They did start him on a dysautonomia med so I hope that helps keep things in check alil better for him with that. Danny is free and clear of the infection that got us here in the first place, phew! One less thing to worry about. I'm glad we elected to stay and have them manage his seizure issues n meds as we've also found out that Danny still is not peeing on his own and really hasn't produced the amounts he needs to. Now to figure out why...it is the brain, or issues with his Kidneys. We might need to get Nephrology and Urology involved, but hey the more the merrier right. Ahhhhh! I have decided to transfer all of Danny's Neuro and balcofen cares down here to CHOW. I do love our old Neuro, but its just a big issue for us ~ seeing the rest of the 13 specialists on his team are all down here. I've met 2 amazing Neuros here during this stay ~ one being the chair of Neuro from Froedert and the other the head of the Childrens' Hospital Neuro dept. They both agreed to follow Danny outpatient, so I am going to take them up on their offer. Once again more changes, but I believe it will be better care in the long run if they are familiar with Danny Neuro wise here. Considering Neuro is Danny's BIGGEST issues. I just wish you could fix the brain, what a complex organ.....wouldn't that be an amazing idea. Thanks for stopping by to check in on us. Please leave a post or comment that you stopped by. I ready them to Danny and we/he loves to hear from you too. I also started a FaceBook page for Danny. It's called Touched By Danny's Life. Stop by and like his page for more daily updates along with more pictures.

Riding the Storm

Danny remains comfy during this hospitalization. Now if only he'd share his bed with his momma I might be able to say I've been comfy too, lol. I was able to start my new pain meds last night and it's too early to tell yet if they are going to work, but I'm hoping by the next day or two i'll get some relief. I have to say I'm not too impressed with the loopy feeling side effects that I've been feeling, so well see. I'll give them the benefit of the doubt but if I can't "adjust" soon then I'm not sure I will be staying on them. Danny is recovering from his illness pretty well. His numbers continue to trend back to "normal" levels. There is still no good reasons to why've had ALL of the issues he had when we came in were going on, Go Figure! I havent seen his baby blues much of the day :(. I'm hoping his trying to rest and let his system heal. The last 2 days he has been having more intense seizures or what we believe are seizures. He required many recovery meds, even more the he normally would get. So I'm wondering if the tiredness is from the meds snowing him. A Neurologist from here (well actually hes the head of Froedert Neuro) came in this morning to talk about Danny and see the video of Danny "seizing" (see my FB page to see). I have to say I was very impressed with his knowledge and interest in Danny. Might even think about switching Dr's to him...we'll see He had many ideas as to how to help dx what's going on with Lil Man. Right now Danny is hooked up to a long term video EEG and of course no episodes have occurred since they were put on. I believe we are going to take him off All his seizure meds and see what happens. If things get worse then he will put back on the ones he feels with help instead of having 7 different ones that could potentially not working, as some could counter act one another. If they are not seizures then we can peruse the route of dyautonomia, possible mitocondrial disease, or it's the progression of his brain damage. Good, bad or indifferent I want to know what or If I can get my son back. I'm punting here! He had a thought that because I have 2 mito diseases (MS & fibro) that possible Danny has an underlining mito also. I need to know what's going on. This was not an easy decision to make, but I feel it needs to be done. The way things are and have been this summer is no quality of life for Danny and it breaks my heart. We'll see how things turn out. I have no idea when we will bust out of here. But I will be running home Thursday for Avrianna's conferences and then off to "The Blue Man Group" in the evening. I can't wait to see Avrianna as I haven't seen here since I left her crying In the ER room last Wednesday. As always our life has gotten a bit crazy, and I'm forever grateful for all your love and support getting us through another health crisis. You guys are amazing!!

Why would this be different??

As usual Danny remains a mystery in the medical world. I swear I need to write my own book, lol. Most of all the labs have come back and not much has jumped out saying here I am. We are still waiting for the cultures to come back and maybe they will show something more concrete. As for now they are still going to continue the 2 broad spectrum antibiotics, until they get more results to see if things need to be changed. I do believe the IV antibiotics are working, because he was actually awake for awhile today AND he gave me a smile :). Danny Is doing well with the Lasix on board so we'll be keeping that on board on a regular basis to flush all the extra fluid off. Now to wait and see if his "fluffiness" goes away. The xrays this morning had shown fluid still in both lungs, so i think this is going to be a slow process. He hasn't lost any weight Since the Lasix but one can only hope. Today the started TPN and lipids to give him some nutrition IV in hopes to help him get stronger and healthier. This will be his main source of nutrition until we can work up on his feeds once his GI track starts working again and hes not so wretchy with things being in nis tummy. We have been able to give him his meds and start a slow rate of formula in his gut, it's a start. Now let's see how well he tolerates it. The GI shut down has many theories as to why...could be from the heavy sedation, having an infection, seizures and or all of the above. GI always seems to one of Danny's Lil tattle tails when he's not feeling good, but he's never gone to this extreme. He normal will shut down when under anesthesia so being this heavily sedated could Ring true as to why GI has caused him problems. Danny's thyroid tests have come back relatively normal and so did his ammonia levels. Sorry not too much to update, but I'll hopefully have more answers tomorrow. Going to get some shut eye. I'm exhausted!

What's going on here!!!!!!!!

The wheels have fallen off this roller coaster ride I call life. Now to figure out how to put things back together. I blog from my ever so comfy couch bed in rm # 404 at CHOW. We came via chariot last night with a very sick little boy. As you all know from my blogs that Danny hasn't really had to best time this summer, it seems as the last rod lengthening was the point of no return for Danny. He just hasn't been the same :(. Well the last few weeks have been no exception to the rule, with new issues that all came tumbling down yesterday morning. First, and most important with all this craziness Danny has remained comfortable which is so important. The issue is he's TOO comfy and that presents tons of problems. Now to figure out why/what's going on with him. This is what I do know as of right now..... his poor body is shutting down!!! He has stopped peeing on his own the last few weeks and noW has stopped producing urine as of yesterday. His lack of BM's despite many attempts to get him to go is concerning but the KUB has shown NO perf or obstruction so that's encourging. He has severe pitting edema and is swollen everywhere, poor boy looks like a stay puff marshmallow. He's gained so much weight in a very short amount of time. The chest X-rays this am is showing fluid in the lungs now too, and I'm waiting on a game plan as to what they are going to try to get rid of this excess fluid. Danny won't wake up!! He is out no matter what we do to arouse it doesn't work. There are tons of theories right no as to what's going on, but nothing concrete so let the testing begin. His CRP ( inflammation marker) is high and his labs have shown a bacterial infection in the blood stream, BUT we caught it in time and it looks like Danny is NOT sepsis, phew! He is not tolerating his feedings, but if we run slowly he manages to most of his meds down. I believe tomorrow they are going to start TPN. There is bleeding coming from his rt Inner ear, trache, and this morning the Gtube. This afternoon they are going to be doing a bronche at the bedside. I believe they are ordering brain imaging, possible long term EEG, cardiac tests, thyroid tests, and many more that Im sure I am missing. Today n tomorrow will be more of dx day and I hope if we seek then we shall find. I will keep you posted as I know more. And now onto me. Tuesday I had a follow up with my Neuro she confirmed that for the most part my brain imaging has remained stable. I still have my lesions but no new ones :). YAY!! It was nice that she was able to go through the parts of the brain that are injured and what it does as it reassured me that most of my issues are indeed MS related as to wherethe sores are located in the my brain. Most of them are located in both frontal lobes. The reason my right side is mostly effected is do to the location the lesion in my spinal cord is. I was also dx with fibromyalgia too, well isn't that special. NOT! Whatcha going to do - it is what it is, but come on ... Who the hell did I piss off? At least I have a reason as to why I hurt so much all the time. I'm looking into diffent therapies and meds to aid me in my independence for longer. Time will tell if things are working, but not gained if nothing tried....right?? I can wonder how well this medical stress with Danny is aggravating my symptoms. Just this morning my hands were weak and I dropped my pumpkin latte, grrrrr. Now that just not right.....it's Pumpkin!! Dan and Avrianna have been bonding more lately and I have to say its SO nice to see. Those two are two peas in pod. They had a Daddy daughter weekend last week up north and had a blast. Dan has taught her how to ride the 4 wheeler and I guess she's become some what of a sharp shooter. He's teaching her how to shoot n hunter safety and she is a natural, go figure. I'm so happy she is excited about going up north now more often and spending more time with her dad. And I can bet Dan is loving it too :) They are planning on another trip this weekend. Which will be nice to get her mind off us being here at the hospital. Avrianna had a really rough time in the ER when we left. It was really the first time she saw transport come pick us up and it scared her. I felt just awful having to walk away from her as she was hugging me tight and crying. Nothing like tearing my heart out and stomping all over it. I can only imagine what goes through her mind and how it plays with her emotions. Poor bug :(