My New DreaMS

I Matter

2012-02-13T10:10:00.006-06:00

WOW ~ who needs to go to therapy when I have YOU guys! I'm truly blessed to have a great support system. I can't express how appreciative I am to have my blog family. You guys are amazing! Even if you haven't "reached out" I can SEE that you care, by all the visits my blog has gotten. I don't know why I strayed away from here as I know blogging is MY thing...to get it ALL out there ~ the good, the bad AND the Ugly. It's MY outlet and a place where people can go to see what we're up too, feeling, and going through. A place I can write down everything that is spinning in my head. Not only to just capture it (so I can stop thinking about it), but a place I can also hold myself accountable.

To show someone else that may be out there that they are not ALONE. I'm NOT perfect ....

I'm just ME!

Funny how I don't look at or treat myself the same way I would others. The drive I have to take care of my kids and give them the best quality of life is my STRONG point, don't mess with this MOMMA BEAR, but when it comes to me.....well the spark is not there.

I SETTLE

I understand that there are things that I just have to settle with with my life, but then there are others things that I just NEED to do. I need to push myself to BE out there. I need to be honest with myself.....I guess I've been in denial and suppressed many of my "feelings", I've coasted along, numb of my emotions. I put a smile on my face and went on as if life is rosy. So was I crazier to make things looks ok, or am I nuts now? I'm struggling with what's the right way to "feel". I look back at what I wanted for my life and I just wanted to be "simple", a wife and mother. My life should be GREAT, right? I'm married, I have two wonderful kids, a beautiful house, I don't have to worry about finances BUT here I am..........struggling with myself.

Filled with WORRY and ANXIETY!

There are SO MANY things that are out of my control. What in the hell makes me so damn special.....to not only "endure" all of this, but to be the one to be in "control" of it all too. Am I really good enough? Am I strong enough? Why ME? "Life" hasn't been the easiest and yet I've pushed through....... so why do I KEEP getting MORE? What a cruel joke....lets see how much Lori can take before she snaps!

Will she?

When?

So after my last post I really didn't know what I was to do or where I needed to go, but I knew I needed something......ANYTHING! I am floating out of reach with myself and I just need to get grounded. Even though it was hard to admit and "expose" my feelings last post I felt this awkward sense of "help" after hitting PUBLISH POST. That was my first acceptance to change ..that I needed to come back to ME. I NEED to not only treat MS, and take care of the kids but I need to treat and take care of MYSELF too. Why do I always sell MYSELF short? I know it's going to be a long, tiring, and forever going trip but I NEED to do this. I realize it's NOT going to be easy and some days I will feel utterly defenseless and defeated, but I will continue to push through.

Lately I've come across some weird "encounters" with the "media" (aka tv, book,s and radio) as they seem to know what I need. Let me explain (I'm not TOTALLY NUTS, I swear)....right after I posted my last post I sat down to watch some TV. What was on? Dr Oz, who had Montel on the show, talking about his MS treatment that has helped with his energy levels. Well wasn't that Cool ... I need that !! I was excited - For the first time in a while, I was excited! I went straight to my computer and started to print off all of his advice. I think it's a START - it's right in front of my face, how much more clearer did I need the message to get moving. It was a wake up call. One of Montel's statements was, "it was time to get busy living instead of getting busy dieing". In not so many words I say this all the time towards Danny's quality of life so why didn't I connect it to mine? Guess I just needed to hear the words.

Here are the linkes to the show:

http://www.doctoroz.com/videos/montels-energy-plan-pt-1

http://www.doctoroz.com/videos/montels-energy-plan-pt-2
http://www.doctoroz.com/videos/montels-energy-plan-pt-3

The next morning while I was getting ready these two songs play back to back and I had this ah ha light bulb moment

"Who Says" by Selena Gomez -

I SAY!! It's up to me! No one is going to do this for me, so I Say it time to get out of this funk!

"There She Stands" by Michael Smith

I know this song is about the Statue of Liberty and how she stands after all the diversity, but I can relate. I WILL stand!

I bought some books to read on MS and the first one I started is "Awkward Bitch" ~ it's wonderful. This woman is heart felt, raw and TRUE! She calls it how it is....MS SUCKS!! Not only is this a painful physical disease, but the emotional craze is also very very REAL! Not knowing what the next day, hell the next minute, will bring, is very SCARY. Not to mention enduring daily pain and vision issues is enough to send anyone to the NUT house. Depending on the day I even feel as if I've already entered the funny farm, when I look at things and it looks like I'm looking at them in warped blurry mirrors.... I can only imagine the effects it takes on my "abilities" of which I either don't notice or will tend to ignore. I've acknowledge that I have MS but I haven't excepted it yet....does that make any sense?

There's been a lot going on with me & Danny, many would say this....whatever I am going through, is justifiable. BUT in my eyes it's not me, it's not ok, and I'm just trying to figure it all out.

The kids are doing well. Avrianna is LOVING dive and continues to do wonderful in school. Tonight she is on a date with her dad they went Bowling for a Girl Scout event. I hope they have a blast. Danny is (on the Danny scale) doing good. He's been teetering with a respiratory funk not a full blown illness but just not his "normal". He's been having A LOT of neurological "episodes" again and we are waiting to hear back from his neurologist on what we should do. The pain in his leg has been doing much better and for that I am thankful. Seeing him cry EVERY day was a killer, I'm NOT going to lie. Dan has been a busy man, I know BIG surprise. The newest Clothes Hamper Coin Laundry is due to open the end of the month. It's located in Oshkosh on Jackson St. Things are progressing nicely and the store is looking GREAT!

Thanks for checking on us!!

Just keep Swimming, swimming, swimming!

2012-02-08T08:31:00.003-06:00

I'm afloat in large, deep waters lately ... some days wondering if I have the strength to stay afloat or am going to sink. I'm stuck in a rut and it SUCKS! I can't understand where or why this has reared it's ugly head, as it's not me.... I'm distant, tired, agitated, anxious, it's hard to concentrate, I'm just

* HERE *

with no drive or care to do anything. Honestly it's difficult to even blog these days...I know right? Right there is a RED flag. It's really hard to swallow personally, I'm always "in control"....or has it just been a front and I'm really spinning OUT of control? I'm questioning a lot lately.....everything . Why can't I just swim to shore and get back on my two feet. It shouldn't be this difficult? But right now it is......

I know right from wrong and the way I'm feeling and thinking lately is just

*WRONG*

Yesterday I had an appt with my neurologist to follow up with my MS and then to have my monthly infusion. I knew I had to say something to her, despite the fact she might throw me in the nut house if I do talk, but I'm

*TIRED*

and right now the shoreline is nowhere in my sight....so I needed her to know I'm NOT me! I know if I can't be honest with her then I'm not being fully honest with myself. I'm scared to all hell that this is something that I won't or can't get a handle on. Am I

*CRAZY*

What's wrong with me? Why can't I get a handle on this? All the symptoms I'm having could be progressive MS or anxiety n depression but from where I'm sitting I'm not sure which one I'd rather be. I don't want to "feel" like this for the rest of my life.

*BLAH*

I'm a work in progress and ................... I WILL keep swimming!

This isn't suppose to happen.................

2012-01-26T08:17:00.006-06:00

This a "normal" comment I get, directed towards Danny's medical status. So when the ENT stated this yesterday about Danny's ears I just had to chuckle as I've heard this more times I care to comment on. Gail n I both looked at each other and shook our heads. Does it surprise me .....NO. It does make our journey more complicated....YES, like we need more complications. Our journey is FULL of bends, twists, and pot holes. It's kinda funny when the Dr's get that ah ha light bulb moment.....Danny IS an enigma. I know Dr Martin is working very diligently to help me get Danny's ears healthy, but I also know how frustrating it is for him to keep running in to road blocks continually. Here is what I know...his ears are bad :(. The right ear looks awful full of white n yellow cheesy/pussy goo, bleeding, and the tube is out. The ENT cleaned out as much of the goo in the right side as he could, and it will be sent down to be cultured. Hearing the suction machine suck all that out of his ears is just WRONG, YUCK. While the ENT was cleaning out the right side he was able to go in a retrieve the tube that has fallen out. This got Dr Martin on the not so nice list really quick. The left ear, even though it doesn't "look" as bad as the right has got it's own alarming issues. For whatever reason the left side had bled at one time and left a bloody film over the opening which is clogging the tube now. The tube isn't positioned correctly either so the drainage doesn't have a chance to come out which leaves it all sitting behind the ear drum. I'm almost positive we'll be heading back down to CHOW to have the left tube removed, but we are sitting tight till we get the culture results from the right ear. What is determined to help the right ear will also aid in what we will do with the left. SIGH!! I HOPE we can get a "fix" for Danny's chronic ear problems. That HAS to be painful.....it breaks my heart. It doesn't help he has had issues with his ears before the trache and vent as they only aid in ear problems. I'm hoping we get at least a preliminary report before the weekend so I can treat whatever it is that's having a party in his ears.

While we were in CHOW I was able to sneak Danny into see the dentist and get his teeth cleaned. I've been pretty lucky at getting Danny in on same day appts, yay! Danny has been lacking on the dentist visits, I think he has the same anxiety as I do with the dentist, because every appt we had this last year I've had to cancel due to illness or surgeries. His normal dentist has left since the last time we were there so he was seen by a different one. I LOVED her!! She was fantastic with Danny (and Mom). Of course when the appt was over she informed us that she too will be possibly leaving to a different establishment. Grrrrr ~ why do all the good ones leave. I think CHOW needs to invest in more of the ones that are leaving in hopes they stay. So it looks as he'll be getting a new dentist yet again. I'm always on guard when it comes to coming into an appt with a Dr I don't know. I can only hope that the rest of the dental staff is as great as the last two even had.

After we he was done in CHOW we just HAD to go to The Cheesecake Factory for some great food. I left there Fat n Sassy, lol. It's always a wonderful treat to be able to go there. It's even better to be able to go with great friends :)

Once we were home there was no rest for the weary because PT was already there waiting for Danny to come home. Danny was casted for new AFO's. He's been long over due..his last pair were made 7-08. Funny thing is, other then his big toe sticking out the front the rest of the AFO is too BIG for him. I guess in '08 he had beefier legs, feet, n ankles then he has now...he's more slim in trim these days. I can't wait to see what they turn out to look like as Avrianna picked out all of the patterns :) His sister will make sure he is "IN" with the style now.

Ms. Bailey is having a rough time lately. She's been throwing up more n more. I had her to the vet to run a bunch of tests n xrays. Everything panned out ok, but the vet is thinking a possible tummy ulcer. We started treating her for that but since then she's gotten worse....so tomorrow we are going back to vet .... maybe he'll "find" something else. I feel bad as I know she's already lost 4 lbs, she's loosing her beautiful coat, and she's getting sick all the time. She's 11.5 yrs old so I know she's getting up there in age which doesn't help either.

I've been busy planning a few parties/get togethers for the next few months. I thoroughly enjoy planning events. We'll just see how they all turn out. Wish me luck!! This next month I have an appt with my Neurologist for my year follow up. I can't wait to see her and talk to her about my MS treatment. I know I will be needing a MRI to catch up on how things have "progressed". I'm alil nervous about talking about my treatment plan as I will have been on the Tysabri for a year now. A wonderful year at that, BUT the chances of me getting the brain infection after being on Tysabri over a year is greater, sigh! What to do, what to do.

I will keep you posted!

Diving Wonder

2012-01-23T15:59:00.004-06:00

Avrianna has taken to Diving VERY WELL! It's like she's been doing it for years. Even the coach has commented on well she is at diving!

Here are some pictures I took on her 1st and 2nd practice.....YES that's right the first time!! AMAZING, I tell ya...AMAZING!

Here are some videos of Avrianna diving!

Have I told you how proud of her I am ~ She ROCKS!!

Sorry but I just had to gloat!! LOVE HER!!

This house is going CRAZY!

2012-01-15T13:43:00.014-06:00

Not only does craziness run rampid through our house ~ I swear I'm going to make a Welcome sign "Welcome to the Funny Farm". Danny has found a favorite book to read on the computer that has a vibrant loud males voice that says "this house is going CRAZY"! It's so great to see him engaged in a book and having fun. We are finding his head to still be the best location to put a switch for him to activate. He gets so excited to hear this book, that he knows what pages have this phase and will skip pages until he hears it. LOVE HIM!!It's well into January and we've finally got hit with winter weather n temps. It's been pretty calm around here for January. Jan 12 and we were wearing sweatshirts outside the weather was almost 50 and no snow on the groundThe next day snow snow snow. Winter is here and the temps are dropping :( Can't say I'm happy about it, but we do live in Wisconsin so I can't really piss n moan too much.

This white car, the driver unknown to me, decided to drive up my driveway and attempt the the round about. They went wide and found themselves stuck in my yard....literally as went so wide they were in the grass. LMOA!! I went out to ask them what the H*!! they were doing on my property but they were able to get the car free and drive away. Morons!! My drive doesn't look like a street so NO Trespassing.

We went into see Dr Kasper on Friday and he made Danny a smaller lightweight splint. We still have no concrete theory of why he continues to have pain in his leg. 1~ hair line fracture 2~ pulled tendon or muscle 3~ knee cap not running on right track. All of which needs "rest" to help recover. The first splint was too heavy n big so I'm hoping this one will help him better. We've increased his clonezapam which should calm his tone down more too.

Danny is still having issues with his ears. His right ear is just chronically yucky but now his left ear has decided to play with in game. Grrrr! Other then the daily pain and the ears Danny is doing pretty good.

Gail helped me organized Lil Man's closet once again. It was getting alil outta control.

Now it's all good :) and even labeled :)Our newest nurse Keren, who started in October. She's become a wonderful addition to our Family. She's been an enthusiastic breath of fresh air. I wasn't sure how Danny would tolerate all the enthusiasm she has, but it's been a wonderful thing. She is constantly doing stuff with him from books, to toys, to massages, she never give him a break. And I LOVE it!! He looks forward to her and Danny is so alert and vocal for her. I've seen him light up around her....I can see positive things between these two. What a great team of nurses Danny has, we are so blessed.

I was at school this last week to pick up Avrianna for an Orthodontist appt and happened to see this on the wall. I can so see her as a Nurse or some part of the Medical field...she's getting into all of that kind of stuff now. Too Cute!!Avrianna is ending her 1st phase of the Orthodontist. She was alil disappointed that she has to have one more month with the braces on, but she knows it's almost over with. Then onto an upper retainer. She will be having phase 2 done on the lower level but she'll have to wait a little longer before we start that.

Here's my AWESOME swimmer with her BIGGEST fan ~ at the Wausau swim meet last weekend. She did FANTASTIC improving on her times and her stroke etiquette is impressive.

Some of our silly swimmers :) What a great group of kids!!

She understands that ALL her practicing through the week has helped with her meet results, but with that being said she's reaching her limit. It's been a LONG season and she's worked very hard but I think she's burning out. She LOVES to swim!! So to keep the "spark" we are starting to dwindle down and give her some down time. It's been becoming a constant quarrel to get her to go to practice as when there, it's swim up n down in the pool for 1.25 hours straight. She does great but it needs to be "fun" too for a 9 year old and really it's not "fun" it's hard work. She's going to try something different the next couple months ~ to join a Diving team. We'll see how that pans out.

My treat to myself!! My first pair of Dansko's ~ I love them. The way they look, feel, and the statements. Gives me a lil pick me up :) This is their 20th anniversary edition and I fell in LOVE with them. Thanks to Keren for sparking my interest in these :)

It's been a crazy few weeks for me too. This last Monday I was able to go out with some of my support group moms for a few drinks before our meeting. I haven't been able to attend the meeting for a VERY long time. It was GREAT seeing them and be able to just ......... get out to unwind.

I'm starting to get why people just SNAP. I'm not sure how much more I can take on, the kids are enough to keep me busy and on my toes, but now I get more. This last month I've found out that in addition to my MS and crappy working thyroid I now have two nodules one on each side floating around in my thyroid. Right now they are just going to "watch" them too see how aggressive they grow. I also had my annual mammogram this week too and NOT to my surprise there was a new mass growing in the right side. Of course it has to be on the right side...the side with the Med port up in my chest, which makes the squishing alil more tricky. I had to go back the next day for more pictures and thankfully what was seen the day before was no longer there on the extra imaging.....so in other words they squished the girls so hard, the day before, it popped ~ lol. Another year until I have to deal with that again :)

One day at a time...right?!? I'm just hoping we can catch our break SOON. This house is going CRAZY!

Thanks for stopping by and checking in on us.

Danny's School Day

2012-01-15T12:15:00.004-06:00

Jan 5th Danny went on a "Field trip" to his School, Coolidge Elementary...for the first time :)
Danny even got to see the Principle :) ~ It's was so nice so got to see him. We talk about him to her at the IEP's but she's never met him. Leave it to my kid to go to the Principle's office on the first day, LOL.
Danny with his Teacher's ~ Mrs. Bowers on the left, his CDL teacher who comes out the house to work with him and Mrs Weyenberg the 2nd grade teacher.
No play time for Danny.....they worked him hard. Here he is in the computer lab. Where PT ~Ms Nicole and ST ~ Ms Cathy joined with us
Danny checking out the smart board in his classroom. While he was introduced to his classmates. There are 6 other students in his room.
Even PT ~ Ms Karen came by to see Danny shine in school. She helped him do a project.
TOO Cute ~
The reaction I got after I asked Danny if he liked going to school :)
Visiting the school was great! I really enjoyed seeing Danny's reaction to the unusual surroundings. I really do think he had a good time :) I am so glad we went. It also confirmed that (even if he could) the school setting wouldn't be the right one for him. Not that they aren't doing a great job there, I just don't see Danny thriving there. He can absorb/learn so much more in his one on one that he gets here ALL DAY at home.

Sit down ~ hold on tight 2012

2012-01-04T19:25:00.006-06:00

My Lil reindeer :0) ~ they are too cute!

We managed to stay at out of the hospital over the Holidays so we hunkered down at home and enjoyed playing with our new toys. It was SO nice!!

Don't let these faces fool you..............

they are NOT as sweet n innocent as they may look. Just ask the carpet guy who had to return to the house twice the last month, grrrrrrrr! Worst part about it as I can't tell you which one is guilty :(

Danny is ringing in the new year of 2012 in true Danny form ~ sigh. It's only the 4th and he's already thrown an ear infection, GI issues, irritability, crying and just today ........

possible bone fracture in his femur ~ Which could be the source of his irritability and crying lately.

Today we went down to CHOW for an eye appt for Danny and then I was to be off to my MS infusion. I was able to sneak Danny in for xrays of his right leg, which has been giving him discomfort, so thankfully Ortho was able to get him in for a picture. I was also able to have ENT check out his right ear as the tube in there has slipped out of position and has been draining funky goo. Once we were finished I got a phone call from the Ortho dept asking if we could bring him back for more xrays. Well that can't be good :( They really thought he had fractures in his femur bone so they wanted a closer look........ there are suspicious marks but nothing the really jumped out at them with the closer views. So the next step is some labs, a bone scan, and possible MRI.

Those fine white lines above the knuckle/growth plate could be fractures or just marks from a "traumatic" episode that has happened in Danny's life. Kinda like a tree with it's rings.

His knee is swollen and soar which the Dr was able to actually see so it was advised that Danny wear this splint for support until we figure out what's really wrong. It looks so comfortable ... doesn't it ~ NOT!!

Another PERFECT shirt ~ Gotta LOVE his attitude......I'm not sure where he gets that from, LOL

What a day today was! Tomorrow I should have a better idea when the other testing will be able to to be done. So we wait ~ Impatiently! Bring it on 2012 ~ I'm READY!

To end on a good note:

Here's a video of Danny chattering away. He's been vocalizing more the last few days which has been music to my ears. The last few months he's really lost the drive to talk, so to hear him once again just warms my heart. Boy have I missed his voice :)

Prepared?

2011-12-22T08:33:00.009-06:00

8 years ago I wasn't prepared for .............. for what was about to happen to our family, the next day. I could have never been prepared for how devastated we would be and how fast our lives would spin in a tailspin. How can one be?? I was so clueless! Our family would NEVER be the same. I was prepared to bring my sweet baby boy into this world happy, healthy, SAFE!! IF only........ I had a crystal ball.

I stare at this picture more then I care to admit ~ This is the last picture I have with my baby boy healthy n safe and I can't even see him. But I know he's in there with everything working like it's suppose to... all his fingers n toes are wiggling, he's sucking his thumb, his brain is functioning, he's moving and kicking around in that small area (he's moving more in there then he ever will out in the BIG world). I was so excited and happy I couldn't wait to see my bundle of joy.

This is MY day that I set aside for myself! The day before Danny's birthday is My day to get it all out! To grieve for all the lost dreams that I had for my son and family. Everything that was taken away... in an instant it was ALL GONE. And once the damage was done there was NOTHING I could do to get it back or make it better! Today is the day where I can be ANGRY!! Angry that this happened, angry how it playing out, angry there is a world out there that my son will NEVER participate in, angry that he has to go through life in fear and pain, angry I will NEVER hear him say "I love you Mom"!! Angry that Avrianna will not have a "normal" relationship with her brother, angry that she has to worry about her brother more then she should!! Angry that I have to keep in the back of mind....is today the day? The day where I will see his baby blue eyes looking back at me for the last time. Angry that I have to keep this fear bottled up inside me EVERYDAY!! Today I pop the cork and let myself be sad. I GET to be SAD!!

Don't get me wrong I LOVE my son more then words can express and I would give anything for him. But I just wish he has what every parent dreams for their child .......... DREAMS! The dreams that he doesn't know exists :( I need to let it all out to be able to start a new, wipe the slate clean, a "new year's resolution in a way.

I did EVERYTHING right! So WHY!?! Where's the logic? Where's innocence? Where's the life I dreamed for my SON!!

This picture is the first I have of Danny, out in the Big Hard Cruel world! Fighting the ultimate fight~ one that no infant should ~ there was NOTHING I could do but hope n pray. This is Total helplessness! This Lil boy you see here will never be the same as he is forever broken. He was brought into this world and taken away injured and never fully repaired..... As you see the brain can NOT be fixed.

This picture has such raw emotions for me.............You can't even imagine! I am reaching out touching my precious Lil boy with only my finger tips wondering if that will be the last time he will ever feel my touch. Does he feel me? Does he know I'm there? Does he know I'm sorry? Sorry just doesn't seem to fit but that's all I could say, is sorry ~ Sorry my precious boy you may not make it through the night .........sorry you will never have what I wanted for you, sorry I will never know who you truly were. Amazing how all that can run through your mind in a matter of moments. How does one ever recover after something like this? Do they??

I wasn't able to hold him, talk to him, Kiss him, let him know Mommy loves him. All I was able to due was Just touch him with my finger tips....Will he continue to fight? Why would he, I'm sure he was scared, cold, and all he knows is pain. He isn't even breathing on his own, will he ever breathe? Then you sit and wait and wait it's so quiet, it's so alone, it's so helpless. I remember after getting the grim prognosis just crying out "OH my sweet boy".

After the dust settles you just want to scream WHAT THE HELL HAPPENED?!?! As it's goes by like a flash but will leave a lasting impression you just can't shake. I am forever scar'd. How terrible is that, on the day of your sons birth and even though he's here.....there is nothing nice to say? Traumatizing !!! Guilt!!! I too am broken :(

I look back at his 8 years of life and the Lil Man he's become. It's all at a very hard and painful cost, over n over n over again he's overcame diversity and medical prognosis'. We've fought the fight and we'll keep on fighting! I was trying to figure out how many times he has had surgeries (I should have kept better track of them) but I think this last one was 37. AMAZING!! What a road it's been and I'm grateful and thankful I am able to walk the road with him. I've learned so much from him and I've met some pretty amazing people along the way.

***********************************************************************************

Tomorrow I will celebrate your birth, your life, your accomplishments, our New Dreams!

Danny ~ You ARE AMAZING Lil Man and my hero....I LOVE You and will ALWAYS be there for you Danny ~ Mommy

I know you know different.....I just wish you didn't have too You are my Inspiration!!

********************************************************************************

So now onto some updating ~

Danny's new wheels :0) We got it yesterday, just in time for his Birthday! He's only sat in it for a few minutes and I've had it in the house for less then a day, BUT this chair (so far) seems to be IT! All the little bells in whistles that Danny needs, but in a fun and functioning version. It's got everything plus it folds (somewhat) and is light weight! Not to mention the awesome color, heehe.

It's a Convaid Rodeo Tilt n recline :)
Thanks to Peter from Walking and Wheeling (Danny's Private PT) for setting us up with this sweet new ride :) I hope to put many miles on it

Yesterday Danny also got his staples taken out. The incision looks good. The area around it is alil angry as I believe he is reacting to the ointment we were putting on it. So we've changed to a cream in hopes that will help. He heals so well....I just wish his system would bounce back as fast. He continues to dance a fine line but we are able to control him at home. We still are making strides to recovery but it's 2 steps ahead and 1 back....but it's still forward :)

We did some labs on Danny at the clinic and all of them have chilled out and are reasonably back to "normal". We were able to discontinue the TPN and Danny has been tolerating his formula at full strength now we just have to work back up to his usual routines. That might take awhile but we will be working towards it each in every day.

I've been every busy working at the school with all the holiday festivities going on. Tomorrow is Avrianna's last day before winter break. I know she's excited about that as they are having alil pizza party and then no school for a week. Too bad we have no snow yet for the kids to play in over break :( It's going to be a brown Christmas over here. I am officially done with buying gifts and even the wrapping so let the Holidays BEGIN!! I do have to say I was sweating it a bit as I'm usually done long before this so I'm relieved to know I was able to finish WITH some time to spare.

Dan is busy building another laundry in Oshkosh on top of finishing his certification for Firefighting. He is hoping to have the laundry up and running near the beginning of February, but we'll have to see. My garages are FULL of laundry equipment, but don't worry I still have a parking stall inside :) And you guys say I'm the crazy one......I beg to differ, LOL. So he's not to disappointed that there is no snow from him to remove throughout the day.

I'm sad that our lifestyle just won't be fair for us to adopt. A few month back Dan and I had looked into the process again, but with the recent events around here that helped refresh me with previous events ...it's just not fair to our family to add to our craziness. Nor even fair to a child that we would add to our family with all the hospitalizations that I'm pulled away for. It wouldn't be so difficult if we weren't inpatient so much but we are so unfortunately we are not going to pursue adoption now. See it as selfishness or selflessness as with this one I'm not so sure which way of the spectrum it lies. Our lifestyle isn't easy....but it's US!

Thanks for stopping by to check on us! You are my saving grace, my outlet. If it wasn't for you guys and the support I get I would be even more crazier then I already am, heehee

Merry Christmas & Happy Holiday

Lori

We are HOME ~ Pics ~Update

2011-12-15T08:39:00.008-06:00

Seeing I wasn't able to post pics on here from the Hospital's network, and now that we're home I thought I would update you guys that don't follow me on Facebook with some pics.

Mr Hot box in the local ER ~ We left there with a Dx with Tracheitis, from being there for 6 hrs

Mr Kissy face the next day down in CHOW after being admitted for Pancreatitis The next days ultrasound showing ~ 3 Gall Bladder stones along with thickening wall and sludging. I'm not sure how they see all of that but I do see the 3 stones. I was told that this is an issue that needs to be taken care of, BUT it may not be the reason why his pancreatitis flared.My beautiful baby girl all dolled up to sing in the Christmas Concert for school

What a great Concert it was....I'm so glad I went :) I missed her so much. I'm so proud that she is very good when I am gone.

Our suite for the 11 days.

This is the first time he's ever been stapled. I thought they used the same incision as the Nissen but they ended up lengthening it. His very bloated tummy, sporting his new Gtube pad.

A couple day post op looking very good ~ especially with his blue new Trache n Gtube pad :)

The very large Hematoma in his groin from the CVL they put in just in case he needed blood or other things for extra access. Which is as painful as it looks for Danny's reactions :(

I can't even begin to tell you how exhausted I was last night slipping in my OWN bed. I don't even remember my head hitting the pillow. We were discharged Wednesday morning and we were unpacking the very full van (how does one acquire so much stuff in the hospital?) by 12:30 :) I was on a mission to get it all done before the Home Health company came by with all of Danny's TPN and IV supplies. Even though we are home he still isn't running on all 10 cylinders yet, but we are comfortable with doing TPN and blood draws at home. We sure are an ICU room now....all the pumps, vents, incision care, monitoring and Port access. It's all worth it just to be home :)

We did run into a snag with the Home Health company that brings his supplies. I had called once I noticed the supplies I ordered, before we were admitted, weren't here at the house. I was told they are no longer going to support us with Danny's supplies or equipment because we went with a different Home Health company for his Vent. Mind you they changed manufactures on their vents and CHOW doesn't support theirs now...so I had no choice to go to a different company to get what we needed. This my friends was their "out" and wash their hands of us. They don't make enough money off us ~ so drop us this first chance they could. Gotta LOVE the system~ NOT! Of course the cowards didn't tell me this when I placed the order and I had to find out when I'm OUT of supplies. One being his formula, sigh! A formula that I just can't go buy at the store because of his allergies and sensitivities. Luckily I found out the pharmacy will order it up for him :) What a pain in the ass, I have worked with them for the last 7 years you'd "think" they would respect us enough to not jeopardize my son's health an weal being. WHATEVER!! This coming from a company that I used to get EVERYTHING from, his supplies, food, the ceiling lift, the wheelchairs, the standers, everything. Their loss as I will NEVER go back to them, EVER!! Not how they treated us in the end and it's over something that was out of my control....they couldn't get us what he needed.

Well I'm not sure how LONG we'll be home as my Mr Social Butterfly. I believe, is planning a Round Robin to head back to CHOW. This morning something triggered him to go into a screaming mess. He was crying, spastic, sweating, tremoring it was very scary to watch and VERY heartbreaking. His RR was 84, HR 184, and sats slowly decreased so we called up Dr Kasper for his wise words of wisdom cuz Gail n I were ready to call 911 (I wasn't going to call Dan and see how long it was going to take him to realize his pager was dispatching to his own home....Yeah I know mean, but kinda funny??) Thankfully Dr K picked up the phone and ran right over to our house. We gave MANY drugs to help him with no such relief so we doubled some of them and then it kicked in. He was snowed finally which meant he needed to go back on the vent cuz his sats dropped down to 76, seriously my nerves are shot!! Unfortunately the med relief hasn't lasted too long as I see he's trying to open his eyes, I just hope he stays comfortable. He should have been out for hours, but no! I'm not sure what today is going to bring, but we'll have a better idea once the labs we drew, while Dr K was here, are in. Needless to say my mind is thinking I should start to pack up the bags again as this party might continue back down in CHOW. I DON'T want to go back! Even though I've been just talking up the wonderful care we received this admission, I don't want to go back this soon!! One day home just isn't enough for us. What a roller coaster ride this has been the last 2 weeks. I'm not sure how much more I can remain "stress free" ~ HA! before my MS starts to act up. I know I'm not running on all my cylinders either, but I do know I can get alot worse too :( The roller coaster is set in motion so hold on....hell put your seat belt on too.

Please keep my family in your thought n prayers. All I want for Christmas is .......... HOME together with ALL my family!

Moving in the right directions

2011-12-11T09:59:00.004-06:00

Danny is doing amazing recovering. Since surgery all his pancreatitis numbers have calmed down and he is back to "normal". This is wonderful which means the trigger for this attack seems to have been the gall bladder. Which going into the surgery we all weren't too sure if the gall bladder problems were in fact THE reason, we knew it was a problem that needed to be addressed but was it the problem driving his pancreas to get angry. With Danny having multiple medical complexities it is not a cut n dry thing with what could be wrong, so my best option was to remove the one potential trigger that I KNEW was going on. Now because the gall bladder is out it doesn't mean he won't have another episode but I can only hope. The surgery went well, the gall bladder wasn't "impressive" (as they say for bad things in the medical world), and his labs are continuing to regulate. His pain meds are needed further apart which is a great thing, but his his BIGGEST hurdle today is pain driven from coughing and wretching. It's very difficult to watch him cry, it's just breaks my heart. I used to think that since the trache it was hard to watch the "quiet" cry but now the cries where he can actually push air up n out to make squeaks and whines are MUCH more heart breaking. The "plan" today is to start up zofran to help with the wretching and change his meds back to oral from IV. Thankfully he is still on TPN for nutrition so most of the meds he he normally gets at home are in the TPN as they are vitamins that he lacks. This is a HUGE step to going home is if tolerates his meds via gtube. We can do the rest of recovery and getting back to normal at home once he is ok with meds in the gut. He'll need to
****med in gut did NOT work this am, poor bug. Another time :(******
Well this is alil set back, but we're still doing ok. Slow n steady is the game Danny plays. He IS being on his own already so we know one system is back up n running :). The wretching has gotten pretty bad even with the zofran, how painful after an abdominal surgery, so I hope it subsides soon.
We've learned that Danny grew a new strain of pseudo in his trache aspirate so he's been put on an antibiotic for that....funny they now had him a dx for tracheitis when we really came in with it, but the pancreatitis and gal bladder trumped it :(. Infectious Disease also found him positive once again for VRE, which I'm totally bummed about. He got this wonderful bug from a friend his nurse was paired with in the crash of '09. Danny needed to have 3 negatives with a certain time frame not on any antibiotics so it s taken this long to get all the tests in. The one would have been the last negative he needed to be out of VRE isolation, but unfortunately it came up positive :(. I don't think we'll try the process again and just bow down to being in isolation forever. It's not a bad thing, meaning the opportunity to pass him more bugs is less likely, but I'm said that he can't have "fun visitors" like the therapy dogs or baseball players come in when they are here. Isolation on top of being inpatient is just another stressed as you just feel like out casts with all the gowns in gloves they need to where to just come in. I feel bad for my Lil Man ...... That no one will touch him in house without those blue gloves n yellow gowns that are so "inviting". You know what I mean?
Dan and Avrianna came down yesterday evening and it was nice to see them. But its a bitter sweet to see them and then watch them drive away, usually with tears in both Avrianna's and my eyes. I miss them so much :). It's never an easy time to be away from your family, but luckily I so blessed that Avrianna does really well when I'm gone .... Wish I could say that about Ms Bailey this time. Yesterday would have been Danny's 8th birthday celebration party and it makes me very sad that we had to cancel it. Just means we will need to plan a bigger n better party later :)

Surgery Update

2011-12-09T13:18:00.003-06:00

The general surgeon came to talk with me right away. He told me the gall bladder had to be removed BUT we could wait if we wanted to have it removed. He wouldn't push it off more then 6 weeks, but we could wait. Even though the proposition sounded good to NOT have surgery right away the idea of going home and having to come back, possibly emergency, didn't sit well with me. So he was put on the surgery calendar for Today. It was suppose to be at 3 this afternoon but I'm thankful they were able to push it up to this morning. I was afraid that it might not happen as last night was alil rough on Danny. After his Mr Jiggles treatment last night he went NUTS with shaking, breathing fast, fever, high heart rate which required more pain meds. He finally calmed down and slept, but was up at 4am doing the same thing. Pain meds were given again and he did coming back down to a more Danny vitals.
They came to get him around 8am but the procedure didn't start till about 10, as I guess I was right on with telling them his internal anatomy wasn't right cuz 5 attempts with ultrasound/X-ray and 1.5hours later he presented to be challenge for his 2 extra lines. The thought was he needed more access then the med port for all the meds, anesthesia, and blood transfusion for surgery. Thankfully the extra access was the only challenges for his gall bladder removal as everything went well and he didn't even need blood. The incision site is where his scar is from his Nissen/fundoplication so there is no extra "war wounds". Woot Woot! They are keeping him paralyzed until later today or even till tomorrow so he reminds comfortable for alil while longer. He looks GREAT!! And I'm so happy he is back in his room where I can be at his side.
The surgeon needed to do an "open" procedure because of the location of the gall bladder and the ITB pump. It would have been too risky to do it laparoscopically so his surgery and recovery is going take longer. They stapled the incision as this procedure has a higher risk of infection so with it being stapled it will allow any bacteria to ooze out easier rather then being sealed in.
Anxiety was high this more I'm not going to lie. You would think after all the procedures he's gone through it was start getting easier...but NOPE! On the contrary It was very difficult. I am glad I saw his labs from this morning as my anxiety was eased (a little bit) because his labs shown his pancreas & liver markers were starting to increase again. Possibly the reason why he was irritated last night. It needed to be done and now he can start the road to recovery
Thanks for following us and keeping Danny in your thoughts n prayers.

Gall bladder

2011-12-06T10:00:00.003-06:00

The ultrasound yesterday has shown stones in Danny's Gall bladder, sludging in the gall bladder, and thickening of the gall bladder wall. This explains A LOT with some of this issues that Danny has been having (not just with the acute issues). In talking with Palliative and Dr Kasper we feel the best option for Danny is to have his gall bladder removed. I will now have both kids that will be gall bladder free, avrianna has hers out on Dec '08 steming from her blood disorder. The surgeon has been paged to get consult and then we'll get a game plan. Danny's pancreas #'s number continue to go down with The gut rest so Now that surgery is in his very near future I can bet they are going to start TPN for nutrition.
During respiratory therapy this morning Danny stared to bleed from his trache, ok really?? Theory is a few things (suction trauma, trauma do to cuff being inflated so much because of the vent, or there is something wrong with is trachea) so we wait to see how today plays out, if it gets worse or better with a few tricks of the trade, or is a more invasive approach needed. Danny is really reacting well to the pain meds....as long as they stay on top of them, Because he has a high pain tolerance they are apt to wait longer to give it to him. Which I am pushing to make it more scheduled so heh as a more restful stay. This morning he was breathing really funny and I couldn't figure out why till I realize he was clenching down from pain :(. Pain meds were given and he is breathing much better :)
Last night I drove home to go to Avrianna's school christmas concert. I'm so glad I went! It was so cute. I am so proud of her :) Then afterwards it was back to the hospital. This lifestyle SUCKS and I don't wish it on anyone. To be separated from your family is just plain awful :(. I can only hope we are not here for a very extended stay. I am even more thankful that I am done with my christmas shopping so I don't have to power shop when we get home, or even worse have nothing for Christmas. I have some wrapping left to do and then I'm finished.
Unfortunately I have to leave Lil Man for a couple hours today to go get my MS infusion, but thankfully it's right here in the Milwaukee area so it won't be too long for me being away. Today we have a nurse that is framiliar with Danny so it makes it alil easier to leave. This hospitalization is really testing my trust issues as you all know I NEVER leave him alone while in the hospital, so my anxiety levels are HIGH.

Go BIG or Go Home

2011-12-05T07:38:00.003-06:00

And boy does Danny do it BIG! We are currently inpatient at CHOW rm# 507 ICU with tracheitis and pancreatitis. I have one sick Lil Man :(. So let's back track a few days a give you the scoop. In my last post you knew Danny was still so so and still wasn't back to himself. Well Saturday afternoon it all came to a head, once I got home from Avrianna's swim meet.
Off to the local ER we went with a fever, breathing like crap, and seizures. We sat there for about 6 hours and the verdict was tracheitis. As he sputium tests grew out moderate WBC, gram + rodes, gram + cocci/strep, gram - cocci, gram - bacilli, gram + cocci/staph. Pretty much anything that he could have .......he does :(. Where in H€\\ did he get that!! They gave him an IV does of cypro in the ER and said that because we had a great support system at home we could go as long as I felt comfortable. Which we did, but not before we had a full blown grand mall for them to see, nice Danny real nice! Thankfully the rescue med worked and they were STILL comfortable with us going home. We just needed to keep him on the vent for support, treat fever n seizures, and go out in the am for oral cypro. Home we went :) ,but we knew if he got worse we'd be coming right back. The next morning he was really not himself and was giving Aleana, RN some grief. I was at the last day of Avrianna's swim meet - which by the way she did fantastic, I'm so proud of her - 2 days 8 events 4 medals n 4 ribbons :). WAY TO GIRL! After the meet Dan was on a mission "impossible" for this ciproflaxin that Danny needed. He went to multiple pharmacies with NO luck. I called Dr K to see what he wanted to do next and then $h!¥ hit the fan, UGH!
Dr K checked over the labs n such that were done in the ER the night before to see if there was anything more definitive if the antibiotic needed to be changed anyways. No he didn't find that, BUT what he did find was his lypase #'s were high (normal 23-300) at 2644, YIKES! So Dr K called the lab to run a different test,stat, and it was high too, which means Danny has pancreatitis. So I got the "pack your bags you have to go south" :( As I was backing I get a knock on the door.....it's Dr K, how awesome is that!! He wanted to give Lil Man and pep talk AND me the blessing to drive him down by myself, cuz I didn't want to go via our chariot the ambulance. I got the thumbs up to go and off we went. About half way there Danny started wretching which made it for a long more stressful ride. Once we got to CHOW we unfortunately had to go through the ER, as we usually are a direct admit,but we were able to sit around and watch the Packer Game before the commotion.
While we've been here he reminds stable but still very ill. Thankfully his pancreas numbers have started to drop with just being NPO (gut rest). He is receiving his meds and hydration through IV, we will access tomorrow wether he can start small feeds or go on TPN. It all depends on what the ultrasound his going to have later says and want the labs show. He is having some issues with the amount of fluid thHimyarites him and he's now 3rd spacing and puffy and we are hoping his dropping hemoglobin is do to too much fluid and not something else, so they are going to decrease fluids and watch him closely. Ive signed papers for transfusion IF he should need it. Let's hoping it will recover after the fluids are lowered.
We sit and wait now to see how his system reacts to the meds to figure out what the next step is going to be. I'm not sure how long this stay is going to be :(, but my gut says its not going to be quick fix :(. I will be leaving this afternoon (yes I have to leave him alone in the hospital, yikes) to go see Avrianna's school Christmas concert tonight and then return here later in the night. I'm very anxious about leaving him here alone, as I've really had bad experiences but I need to be home for her concert. The timing really sucks for this inpatient, but then again there really isnt a good time for it....is there? This weekend we were to have Danny's 8th bday celebration, but I needed to cancel :(. I'm very sad, but it is what it is and we just need to get him better. It's snowing here in Milwaukee so I will have to leave even earlier then I had planned, man this is so hard to lead him :(
Thanks for checking up on us. I will keep you posted

Let the Holiday's BEGIN!

2011-12-01T08:50:00.005-06:00

Our 2011 Christmas Card
Our 2011 Christmas tree :)Thankfully this year I am on my A game and was able to decorate the house inside & out over the weekend after Thanksgiving. I am NOT a Black Friday shopper, I use those 3 days to get the house ready for The Holiday's. Last year was a difficult one for me as I was in a full blown MS flare up and it took me about 2 weeks to get everything done. It took everything I had to get it done, but not this year! I was able to get it done over those 3 days AND I enjoyed doing it. YAY!!

With the Season of Giving our family holds onto tradition and gets SICK! Dan goes up Hunting and comes back not always with a deer, BUT he does come back SICK. Which in turn shares the bug with the family. Isn't that NICE?!?! Avrianna got it next, GREAT! She actually stayed home from school, which was the first time ever she's had to stay home sick from school. With the both of them not having spleens it's always hangs with them longer and hits them harder. STAY AWAY from Danny and I, who BOTH have crappy immune systems. I know what a family we make up ......dysFUNctional all the way baby.

My Lil bug trying to steam out the chills in her body, guess it works better in Momma's tub :)
Thankfully so far it hasn't effected Danny or I much. I think Danny is still battling his dysautonomia which was kicked into HIGH GEAR after this last surgery. But you wouldn't know it with his attitude :) The day after they grew his rods out 1.5" and his sitting up all by himself, smiling, and trying to talk.

Look what I can do ~ "All stressed out and no one to CHOKE". Love his sassy t-shirts :)
Even though he's been all smiles during the day....when the night comes it's another story. Danny has always had a hard time regulating his body temp which is why he likes to hangs around 93-94 degrees...that is his normal. Anything over 95 and his system goes into over drive...his body goes flush n sweaty, his HR and respers increase, and if we don't intervene he continues to increase his temps. Unfortunately with the amount and location of his brain damage he can't do it on his own so he needs someone to be his thermostat. Whenever he goes under anesthesia it just heightens his dysfunction of his autonomic system (dysautonomia) and this time it really has been an issue.

We are trying to figure out if it's to do with "Puff" ~ here's his new one LTV1150
This is really the first surgery he has had with "Puff" and we haven't found that prefect setting for Danny yet. Even before "Puff" Danny's had issues with heated humidification on the mask aerosol so I'm playing with the setting to see if it I can control Danny's body temps better through "Puff". The heater and the heated circuits on "Puff" are just too warm for what Danny's body is acclimated to. That's my theory anyway. Last night I brought out the fan to blow on him and lowered his heater temperature, which seemed to help. So tonight I'm going to try and disconnect the heated wire and just have the heater going along with the fan to cool him off. It's a work in progress and I'm on a mission to find out what's the best route for Danny ... even if it doesn't fall within the "normal" guidelines. I swear when you ask for options the "system" doesn't like to do anything that isn't written in black n white. Well Danny is ALL GREY people so lets think outside the box. Wish me luck as I know my support from the "system" won't have my back on this one.

Avrianna has her home swim meet at the Neenah High School this weekend. How exciting!! I'm hoping she does well seeing she hasn't been feeling herself all week. Her school Christmas concert is this Monday so she's been singing up a storm around the house to be ready for her on stage performance.

Danny's 8th Birthday celebration is right around the corner and we're very excited to be taking on a new Project this year. In Leau of presents for Danny we are asking his party guest to get supplies, toys, and gift cards for a local program that helps out local families who are inpatient. As I know ALL TOO WELL when going into the hospital you are not prepared, so this program puts together baskets and gifts to the parents and child. This project is very near and dear to my heart...Not only because I've been that parent, but because the Mom that created the program is a local friend. The program is The Princess Kylee Project and it was created in honor of ^Kylee^, by her mom, after Kylee's passing this spring. I had the pleasure to know Kylee in person and she will be forever missed. Please take a moment and stop by her website and see the wonderful things that they do. They just posted a new Hospital Holiday Wish list ~ if you'd like to participate in donating through Danny's 8th birthday celebration please let me know and we can work out how to get the items to The McGlin's. Danny's party is going on Dec 10th so lets work together and see how many great things we can get! What an amazing thing to do to not only to help out families, but to keep Kylee's legacy alive.

Thanks for stopping by to check on us! Pleas leave a comment or post to let us know you stopped by. We LOVE to hear from you as well. Happy Holidays!!

UPs n Down's

2011-11-23T14:16:00.004-06:00

So we had a challenging afternoon yesterday that is STILL going. Let me explain...
Seeing we were out of our "normal" when it comes to surgeries it was quite a whirlwind to get the staff to understand that Danny is NOT going to fall in ANY of their post surgical standards. After I talked with the surgeon about the procedure I figured it wouldn't be long until I got to see Danny's cheeks again, but this was all going to be new to me as we usually go straight up to the ICU room after surgery and we were going to be discharged the same day. This in itself is AMAZING as he's NEVER had day surgery be SAME DAY :) It was unusually long for them to call me back to see Danny in the OR recovery, as I found out they were waiting to wake up from the anesthetic to get me and then head up to the recovery holding area. That could be VERY LONG time ~ As I explained that the day before I gave him 1 does of Roxicet and didn't see the white of his eyes for almost 6 hours ~ and they just knocked him out for surgery so it wasn't likely they would see him awake. There was also a concern with Danny's low temperature, which was 92.9, so when I did see him there was a MOUND of blankets on him. "Um....whatcha doing? You warm him up to "normal" temps and your going to open a new can a worms. Please take those blankets off." Danny is normally around 94 degrees and he always comes back from the OR cooler. I know it's CRAZY, but this is were he sits...it's Danny's normal! As I was trying to ease the nurses fears of the unusual standards that Danny follows when thankfully the surgeon walked by and helped to reassure her that yes Mom is NOT off her rocker, lol. As the nurse reported off to the nurse that was going to watch him in recovery I over heard that there was 2 meds used in the OR room on Danny...ones that I have repetitively said shouldn't be used. **SIGH** Not to shoot the messenger or anything but the nurse knew I wasn't IMPRESSED. Really people Danny has had over 30 procedures done you'd think they would read up on the previous notes to know what they are dealing with. BUT NO!! Up in the recovery we hung out for a couple hours, chatted with the Palliative doctor and got our discharge papers around noon. Again AMAZING!! He finally did wake up while we were leaving the hospital and he did wonderful on the car ride home. He really did great through the afternoon...you wouldn't have even known he had surgery in the morning ~ WOW! BUT by the evening rolled around it became a different story. Why do the things start to go hay wire in the evening?? He started retching his slow rate of Pedialyte he was getting and the med volume set him over the edge :( By this morning I was hopping to try to keep up with all that he needed. The ventilator over the night was a pain in the @$$, I believe it's due to the heater settings in addition to the tubing size. It was spitting and sputtering water about every hour, which meant I was UP "playing" with the alarms. So I took care of that, luckily I still had the "old" vent here, I hooked it back up and put that back on him. No MORE alarms in the rest of the night....with the vent. He's continued to wretch with his attempts on feeds and meds. He has a fever now which has kicked him seizures in. It's obvious he has another post surgical ileus that we'll have to work him through, I'm hoping we can slowly work his feeds of Pedialyte up that will help his GI tract out, if not that means starting IV fluids. Thankfully he is a GREAT healer, as his incision look phenomenal .... now if we can only get his system to NOT over react when having surgery.
So even though we are home it hasn't been an easy ride, but we are HOME and for that I am thankful. Thankful that I can spend Thanksgiving this year in the comforts of my own home with BOTH my kids. Dan has the turkey soaking to go in the smoker tomorrow and I can't wait. It's going to be a very low key and quiet holiday here at the Osero's as it's just going to be us four, we don't have anyone coming over and we're not traveling. It's going to be GREAT hanging out in our comfies snacking on leftover turkey. Then Bring on the decorations and Christmas music....NO BLACK FRIDAY shopping for us. It's going to be a day full of - holiday cheer and maybe a few Holiday Hot toddies :)
Happy Thanksgiving !

Rod lengthening

2011-11-22T08:25:00.004-06:00

What a day so far for us. I woke up at 3:20am, 10 mins before my alarm clock was to go off....what's up with that?? Thankfully I did as I heard the water sloshing around in Danny's vent tubing and then I noticed the "new" heater setting was too high. Which ment Danny's trachea was dry :(. His ts were low and heart rate high, really? Today? Really!?! I went into high gear, well as high gear as one can at 3 in the morning, and started back to back breathing treatments for the next 45 mins. That seemed to help. So we hit the road at 4:30 headed for CHOW. The roads were like ghost towns until about 5:30 and it was like a switch turn on and the roads were alive with vehicles, amazing how many are on the go that early. We got to CHOW and waited awhile as the day surgery was packed! Danny was pretty "upset" with a high BP, red, shaking, and his resp was fast so he was either in pain (I couldn't give him any pain meds) or he was aware of where he was this early in the AM and pissed off. Thankfully the versed helped calm him down :). The nurses were able to access his med port on the first try, which help ease some of my anxiety, phew! They rolled Danny into the OR at 8am and they thought I would be able to see his handsome face again in about 1-1.5 hours. I went down to Cafe West to induldge myself In a Large Minty Mocha, found myself and reasonably comfy couch, and now I sit and wait for the phone to ring at the receptionist's desk and for her to call out "parent for Daniel Osero". Dr Tassone said as long as everything goes well in the OR AND Danny behaves himself the "plan" is we get to go home yet today. How cool would that be we can sleep in. Our own beds tonight.

9:08. - he's DONE and things went great. The rods were grown out another 1.5". OMG, you are going to be so tall!!! He's already waking up and the plain is as long as I think his good ..... WE ARE OUT of here!!! Amazing:). I will keep you posted

What we've been up too

2011-11-21T14:09:00.004-06:00

Sorry I've been slacking on the blog entries......

Danny's cultures finally grew back moderate staph and 2 strains of Psuedomonas. But the results didn't come soon enough to wait it out before putting him on antibiotics as he was getting more uncomfortable and unstable. We went into see Dr Kasper, as Danny was continuing to get ickier, to do more tests and xrays. Once we (Gail) were able to access the med port to run labs we were off to Xrays to check out his lungs seeing he was hanging on the vent longer in the mornings. The xrays looked good to me, but Dr K kept studying them....hmmmm? After a second round of xrays, he told me what he was looking at. Danny's rods seem to be sitting NOT properly on his pelvis. ARE YOU KIDDING ME?? Once again, it seems as if, my son is growing like a weed and there is now a very large gap from the rod to his pelvis. Which is amazing to us on how the rods are still attached, sigh. I'm hoping that the issue is only because he's grown and there is nothing more concerning going on. His xrays were sent down to Dr Tassone and Danny is now scheduled for surgery tomorrow am for a rod lengthening. I will know more tomorrow after surgery as to why this has happened. Good thing is Danny is due for a rod lengthening anyways, right? It's a good thing is is going in, as this last weekend was a tough one for Danny on pain. Not only did we find out the rods were/are an issue Dr Kasper found out another issue Danny was having. I think Dr K should have a degree in investigation too.....as he also (by mistake) found that Danny has been lacking zinc in his diet. Which potentially could be the cause of Danny's nail & GI issues. We are still waiting for some of the stool labs to come back to see if he has Crohn's or Colitis as his Protein loosing numbers were high, but I'm hoping it's just because he has not had zinc in his diet along with his latest bought of illness. We'll see ~

Here's my Lil Man chillaxing on the couch with Gail. Gail where is your lap? ~ LOL
This last weekend Avrianna had a great swim meet in Oshkosh.

She improved her times 7 out of 8 of her events. Here is the start of her "Best Time" tattoos :) her arm was FULL of them by the end of the Event.

I am SO PROUD of her :)

At the event she was able to meet up with 2 Olympic Swimmers ~ How Cool is that. I told "A" this could be her some day. Sitting in a swim meet encouraging younger swimmers and people wanting her autograph.
Very Exciting he got their autographs on her Swim Backpack :)

I will keep you posted on how tomorrow goes.

Thanks for stopping by to check on us!

Hummmmm.........

2011-11-09T15:25:00.004-06:00

What came first The Chicken or The Egg ???

This is what we are figuring out with Danny. His system is all out of whack at the moment....Totally OUT OF WHACK! He's acquired an ear infection, tracheitis/infection, major diarrhea, and his dysautonomia storms are in full swing. Is each one their own issue or are they related? Is one driving the other? It's a heart wrenching process to figure out what is wrong with Danny...Where does it hurt? What can I do? Just breaks my heart knowing that something is ailing him and he can't tell me where it is. So it's up to me to I SPY it as easily and quickly as I can so we can treat him. My favorite is that Danny doesn't follow the "true rule" to things so it makes this Hide n Seek game a little stressful. Then to figure out WHAT issue is THE issue? Are these other ailments because of this main problem or do they need individual attention.

The ENT cultured his trachea yesterday, when we had to drive down to CHOW spare of the moment, because the stoma is swollen, red and draining some blood. No one here wanted to pull out his trache for his trache change as we were afraid we wouldn't be able to get it back in. So while we were down in CHOW the ENT changed it out for us, SO NICE! I'm hoping the culture comes back soon as we're NOT treating the infection until we see what bug grows out. He's already a Pooping machine so to add antibiotics in the mix it better be the right one. We have cultured his watery stools today so we'll get an idea of what going on with his GI system too. Until we figure that out we're holding on his formula because he is just dumping whatever we put in him. Poor Bug :( I hate seeing him uncomfortable. So we'll wait.....impatiently!

Change

2011-11-03T13:22:00.004-05:00

The weather and the trees have definitely changed since we left for Florida. Most of the trees are bare of their leaves and it's gotten chilly enough that there has been flurries seen here n there. NOT COOL! That really made it hard to return to Wisconsin weather when the weather in Florida was just perfect!

We got home early Sunday morning and LET the UNPACKING begin. AGAIN!! Making our decision to put the condo for sale .... less packing, unpacking, and cleaning. Let's see ~ we packed up the RV and cleaned the house to leave, then unpacked & cleaned up the RV, to put everything in the Condo after I cleaned it up from sitting empty so long, then we packed everything back up and put it in the RV and cleaned up the condo from living in it. Once home we packed up and cleaned the RV to unpack it all back in the house. I'm done with cleaning and packing! Once we are in the RV more we can pack it up, once we get to where we are going we can bump out the sides and that's IT! I really can't wait!!

Monday it was back to "normal" around here. I took Avrianna Trick R Treating in the evening and boy did she score the Candy, wow. She was Harry Potter this year (I wouldn't be surprised if she wants to be a "Blue Man" next year). We dressed up Danny in camouflage and his chair too :0)"HA HA ~ I SEE YOU BUT YOU CAN'T SEE ME"

Tuesday was a Milwaukee Day for Danny and for myself. First was Trache/Vent clinic for Danny. Lots of chit chatting about Danny and Puff. Danny hasn't been sleeping well at nights so we are trying to figure out if it's Danny being on Puff, his meds are not working well anymore, his dysautonomia (which going NUTS again), or Danny just being Danny. It's never an easy find with him. No Black n White he's ALL GREY! Danny also has a new trache that we are trying, as they Shiley cuffed trache was getting to be a problem. As you remember we needed to go to CHOW the day we left for Florida so the ENT could put in his cuffed trache because we couldn't at home. Then on Sunday during the next trache change I couldn't get the old trache out, YIKES! After 4 tries and alot of prayers it came out, but the stoma did start bleeding alil. He now has a Bivona TTS in which seems to be easier on him but the true test will be when we have to change the trache on Monday. Cross your fingers!! Then we talked about what needs to happen for us to change over to a new Home Medical Equipment supplier. Our old company just wasn't able to support everything Danny needed any longer so despite the relationships we have.....we are moving to a different company.

Once Danny was done we were off to the other side of Milwaukee to do my MS infusion. That went well other then it was LONG due to having to wait an addl 50 minutes to get the medicine made and up to the floor. I am trying to see if I can do my treatment back in the Fox Valley. I will still see the Neurologist in Waukesha every 6 months, but I would like to do my monthly treatments alil closer if I can. I am doing pretty well with my MS, I still have my good days and my bad. But they come n go instead of the bad ones sticking around. This colder weather seems to have chased my energy levels away just like the leaves but I'm hoping I can nip it in the bud and get more......ANYTHING! It's disappointing to look into the future AKA holidays and know there is so much stuff to do when I have no ambition.....NONE. I can't believe I am thinking of Danny's birthday celebrations and Holiday stuff. Bring it ON!!

This weekend is a busy weekend for Avrianna she has a Swim Meet in Howard Suamico both Saturday and Sunday. She needs to be in the water by 7am so it will be early days and early Nights around here. Thankfully it is daylight savings on this weekend and we get to fall behind....we gain an hour, YAY!!

Thanks for stopping by to check in on us! Now that we are up to date :) Hope you all are doing well.

Let the FUN begin!

2011-11-03T08:00:00.020-05:00

The Loaded RV picked Danny and I up in Milwaukee, we ate some dinner before we left, and then on the road Florida bound we went. The ride down there was uneventful but long....it's 27 hrs of driving time. So when we made it Universal Studios in the early afternoon on Saturday. I was ready to get out of the RV. The weather was amazing and the crowds in the park were even better. It was definitely NOT in season for the theme park as the parking lots were empty and the lines to the rides were short..if any. In areas it was like a ghost park :)

We went straight to The Wizarding World of Harry Potter once we got there. It looks AMAZING...just like in the movies. We toured the castle, rode the castle ride (graphic), bought some souvenirs, and drank some Butterbeer (YUMMY!). You can tell that The Wizarding World of Harry Potter is the drive right now to Universal Island. We saw more people in there then what we saw in the rest of the theme park :) But still the longest line for the castle ride was only about 40 minutes....and I don't think it really even took that long. We had a wonderful time!!

The singing frogs :) What a beautiful performance ~ lovely voices
As we were getting on the simulated ride they had the candles floating up in the ceiling :)
Dumbledore and other characters would show up through the castle. It looked like they were really there talking to us. ~ Tid Bit of information....the box in Dumbledore's office with the wand was the actual wand from the Movie ~
The pictures were actually "alive" and once you walked in they would talk to you. So COOL!
We headed to The Blue Man Group show after the park. Which we ALMOST didn't make it as I had the wrong time....and thankfully we saw the board right before it was to start so we busted butt and made it. OOPS! All I have to say about the show is ~ WOW!! We've already looked up when they are going to be performing in our area and YES we are going again :)

Avrianna was SO excited to see he left a blue hand print on her sweatshirt. This is now her favorite sweatshirt :)

My mini Blue "Men" ~ With a piece of the paper....oh the paper ~ LOL

Avrianna said Blue Man was the best part of our vacation.....even over Harry Potter (now that is something!)

After the show we were STARVING! Our plan for this day was to go to Emeril's, but with my mishap with timing we weren't able to go (homecoming was this evening and they were packed, busy) So went to an even better place, that fit us better Bubba Gump Shrimp! Woot Woot! My favorite movie is Forest Gump and to be able to go here was a treat for me. LOVED IT!! Food was great, drinks were better and of course I had passed the Forest Gump trivia that the waitress questioned us on. I've watched it 1000's of times. I definitely NEEDED to get some Bubba Gump souvenirs. Both kids got a T-shirt (Danny wore his to CHOW the other day and it got alot of attention .... Stupid Is AS Stupid Does) and then I got this license plate which I just HAD to HAVE!!

The next day we went to the Original Universal Studios Theme Park ~ Another great day for weather and lines....

Here are some fun pics through our park experience:

The Jaws Boat Ride

She really liked the Men in Black ride ~

"Mom who's Betty Boop?"

"Mom who's Lucy" ~ ok, seriously Am I that old? History lesson at Universal ~ LOL

Chillin out watch The Blue's Brothers perform.

Shrek in 4D ~ so cool!
Beetlejuice's Rock Concert ~ Dan didn't think he was going to have a good time, but to his amazement the music and show was good

YIKES!

Hold ON!!

Dorthy II from Twister :) ~ at the Twister simulated ride
It amazes me to think that in season this place is zig zagged with people. I don't do well with that, lol.Of course now that we've seen all this at Universal we have to watch the movies now. Avrianna never saw Twister so now she's seen that one. And she only saw one MIB movie so that's sitting on the end table to be watched soon. I am on a mission to find Beetlejuice so she can watch that one too :)

We tried to get on the ET ride on 2 different occasions for it to break down, thankfully not while we were on it. I chalked that up to someone telling me NOT to ride ET.....maybe next time.

From Universal we packed up in the RV and headed towards Kissimmee to Medieval Times for dinner and a show. How fun!

Our picture with the King

We ate our meal with NO utensils.....Everyone got the same thing Soup, garlic bread, potato, 1/2 chicken, ribs, and an apple turnover.....Oh the food was delicious.

We were cheering for the red knight :)

Avrianna was excited that she got the First Carnation thrown out into the crowd

Monday October 24th was Avrianan's 9th Birthday. She spent it poolside enjoying the wonderful weather.
She is very proud of her picture blanket I had made for herAnd we enjoyed GREAT Food ~ Our HAVE to STOP at restuarant when we are in FL now. Plus Aleana HAD to come to Pinchers before her flight the next day back to WI :)

The the seafood.......AMAZING!! What else is there to eat at a crab shack but CRAB!!

Sorry Gail, but it was FANTASTIC!! Maybe next time?

Avrianna isn't a seafood fan so we took he the next day to her FAVORITE.....for a Mac N Cheese pizza :)

This trip we made it to the Beach. We met up with one of our "special" families that actually live here in WI, but was on vacation down there at the same time. Here are some of our beach pics.

Amazing....right?!

My beach Babes

We were busy this trip that is for sure. Not only with our activities but with all the packing, unpacking, cleaning.......repeat.....repeat......and repeat. Dan and I decided it was just too much work to keep the condo. So while we where down there we managed to clean out the condo and put it up for sale. It is an end of an era for us :( We will definitely miss the place and the space, BUT it will be nice to be able to use the RV more. We'll be coming back to the same area because we just LOVE it there, but now we'll just be in the RV.

Hope you enjoyed seeing our vacation. It's always nice to get out and go some where warm, but it's even better coming home.

Tailspin Begins

2011-10-30T15:23:00.002-05:00

I accidentally posted this in my other blog...... here was the start of our vacation. I will try and update about the actual vacation later today or tomorrow.

Ok who told Danny we were going to leave for vacation?? On Wednesday Danny woke up at 2:30 and just wasn't himself. By the time his nurse came into work he was spastic, high heart rate, fever, but he was all smiles. I think he just wanted to get out of getting his flu shot that aftenoon. Well it worked no shot for him, just Ms Avrianna got hers. I got mine last week so I'm good. By the afternoon Danny stared "dumping". So the theory is that his system just wasn't tolerating the supplemental protein we started giving him. Needless to say I stopped the protein until we come back from our vacation and then well address this issue. He doesn't need to be having multiple BM's a day while on vacation, NO ONE would appreciate that. Unfortuanelty Thursday morning wasn't any better and once again Danny was up by 2:20am. Can you say running on empty - Yes I was! But i neede to pack on. I was doing pretty good with getting the RV ready when Danny felt the need to throw me yet again another vacation curve ball. What is it with this kid ! I know Like I ALWAYS say .... It's all about Danny Osero. LOL. During his weekly routine trache change the day was thrown in an up roar. His old trache was pulled out, his site was cleaned, but the new trache wouldnt go back in. Seriously!!! Thankfully we had some of his older versions ( the uncuffed) traches around and that one went in. Now it's 10:30am the day we are to leave for FL at 3:30pm. So I had 5 hours, NO Pressure at all! I swear he is shaving years off my life. So now he has a teache in BUT not the one that works on Puff. Now what?!? I did the "good" thing and called Down to CHOW, after talking with Dr Kasper. They wanted me to bring him down so the ENT could check him out and get his trache in -- did I mention we were leaving at 3:30 for Florida?? I packed As much as I could and headed down south to CHOW which is 1.5 hours one way South of my house *sigh*. The ENT was able to get the trache in with minimal trauma - YAY- Dr Martin Rocks!! While we were there the dic suctioned out the goo in Danny's right eat too. Once i Realized knew we were still going on vacation (thank god, As I didn't want to have to tell Avrianna we weren't going to Harry Potter), I called Dan to come pick Danny n I up in Milwaukee. So Danny n I hung out until the RV with the car
Dolly came. I figured I would try to do a few other things while in CHOW seeing I had time to burn. Danny got sized and is sporting a new AMT Gtube button plus I was able To track down someone to give Danny a flu shot. Yahoo - what a tune
Up he got .... Without it being planned :). We were able to stop by and visit our good friend Ryan who is inpatient there. We hope he feels better and can go home soon
We are on the road and doing well with time. Thanks for checking on us. I will update later. It's my turn to drive :) sorry if there is alot of errors here -

I Know Different

2011-10-09T09:46:00.009-05:00

This is beautiful! It was written by Tricia Proefrock & I wanted to share...

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

The First Picture of my sweet Lil Man, Danny ~ from THAT moment I touched his hand for the first time I KNEW we were going to Different, and that we'd have a bond unlike no other. To my HERO ~ Mommy Loves that you "Know Different"

Thank You Tricia Proefrock for writing this ~ It's AMAZING!

Adjusting

2011-10-02T13:02:00.005-05:00

We are getting back to a new normal and starting a routine around here. It hasn't been the easiest road we've been on, but we've also been on worse. Now that things have settled down, I can start to reflect on all the change and newness around here. I'm not going to lie the vent isn't an easy step to take, BUT it's also comforting to know that we have a way to make Danny more comfortable and hopefully less ill. We've needed to do some tweaking with the settings on the vent and Danny needed to change to a cuffed trache, but I think he's now in a good place (for the moment) with Puff. The alarms have lessened and his tolerance has improved. Lil Man's biggest hurdle is getting used to the new cuffed trache. It must "tickle" his trachea more as he is doing alot more coughing and the last trache change was not the best experience. I can only hope it gets easier on him as I hate to watch him struggle.

Here's Lil Man with all the tubing and baggage on. We had to "travel" with him....just into the hospital for a blood gas level one morning, but it was with all the "business' on. That was a hard to swallow trip.......everyone staring even more then ever. Wondering if people even saw Danny or just all the equipment he was hooked up to :(

Well I see him, all of him, those cheeks, his stunning blue eyes, that thick hair, and his AMAZING Sassy attitude ;0) ~ Boy do I LOVE this Lil Man!!

I'm going to have to put the wheelie bars back on with ALL this on there. He's getting alil heavy in the rear ~ LOL.

We've started to train a new nurse this week. I think she is going to be a good fit. She seems to be very educated, hands on, and caring. Time will tell if she's comfortable with my Sassy Lil Man :)

Sleep Study

2011-09-26T14:57:00.006-05:00

We were able to bust out of CHOW Saturday morning around 10:15. So it's been a bit chaotic around here, so sorry for not updating.Friday was a very low key day as we sat around and waited for the sleep lab to call Danny down to start his study. We went down around 8pm and he got prep'd for the study. I'm not sure about you but there is no way I would be able to sleep with all this jazz on me. Danny slept right through all the commotion. And commotion there was....seeing we were not on the floor for the study his nurse had to come down with his feed, meds, and she wanted to flush n cap off the Med port. Meds were given, feeds were started and the Port was .................PLUGGED! UGH!! I guess when the IV fluids were stopped in the am it was never flushed with heparin. So his nurse had to go back up stairs to figure out what was going to be done. The CVL team stated the port NEEDED to be functioning even if we weren't using it because they needed to find out if the clog was in the line or the port. Luckily the TPA worked in the line OR he was going to get reaccessed. If that didn't work....they said they would have had to put in a whole new med port. OMG that would have been awful. THANKFULLY it all worked out. By the time we were done farting around with him in the room the study really should have gotten some go results from about 10:30 till 2am, as this is when he decided he needed to get up. GO FIGURE! They poked his finger for a blood gas at 5:30am and back upstairs we went to wait till rounds and the ok to leave. We were on the road around 10:15am and in the door around noon. Ahhhhhh! We were both exhausted but I still had alot to do. Unpacking, waiting for the DME to get here with supplies, and everything else...heehee. Of course the supplies that my DME supplier wasn't compatible with everything SO.............we have done some tweaking. The first nite wasn't the easiest as vent alarms were going off through the nite. Puff and I have a love hate relationship....it's making it really easy to love to hate it. But by Sunday nite it wasn't too bad. See you can teach an old dog new tricks :)
This afternoon a certain Lil Man scared the H%!! out of me, Gail, and Dr Kasper. I guess the new BP med had finally hit his system and ..............NOT SO GOOD! He was very pale, wouldn't arouse, low BP, and heart rate was 26!! HOLY $H!T!! NOT COOL!! I called Dr K up and we agreed to hold the med for right now and keep a close eye out on Danny. I think we all had to change our shorts after that lil stunt!! 5 hours later Danny is up in his chair awake and smiling ~ ROTTEN I tell ya, just plain out SASSY. I swear he just shaved a few years off my lifespan today. Thankfully he seems to be doing well right now. BUT man, just reminds me how fast things can go down hill.

I am still awaiting to hear how the study went and if there needs to be any changes. My gut says we will need to change his trache to a cuffed one as there is a HUGE leak out of his nose, mouth and under his trache. The study will tell!
Thanks again for checking in on us :)

End Tidal

2011-09-22T18:57:00.005-05:00

END TIDAL............this has become a word that I don't think I'm going to like :(. All night long, last night, the RT's were chasing a good end tidal -which means CO2 levels. Last nite we had many peeps partying in Danny's room......unfortunately Danny wasn't awake till 1am joining us. Danny didn't fight "Puff" (my name his vent, lol), which I really had thought Thayer was going to be an issue. Oh no on the contrary Danny "rode" puff more comfortably, at times, the I would have liked. Puff is set to breathe for Danny 8 times per minute in addition to him being to breathe "over" Puff (breathe on his own), but Danny liked to let Puff do all the work some times. So finding a happy medium between them, TRICKY. This morning Dannys CO2 levels were on the high side....go figure as the RT's got sick of figuring out so they removed the sensor/monitor sometime through the nite. The blood gas that was done showed he still wasn't venting well. Once the day RT's came in and checked what settings he was on they figured out why his end tidal was off.....the settings were decreased instead increased during the nite which then was not giving Danny the full breath he needed, ugh. Seeing Danny didn't sleep the best he took a nap right away in the am so they were able to play with the settings (by someone who knew what the heck they were doing this time), and it looks as if we might have a better nite tonite then last. My big concern this morning in addition to his end tidal was the fact he was having mucus plug after mucus plug which continued throughout the day. I believe it is the humidity or lack there of but the Pulmnology Dr believes Puff is pulling the crap that has settled in his lungs out. Not sure on that theory as Danny does so much pulmonary toiletry - heeehee - twice a day that you'd think some of this would have been seen or at least heard before??
I found out a better time frame Danny was going to go into the OR today for ear tubes and of course it was during my appt to get my MS infusion in a different hospital, sigh. I have NEVER not been here for Danny during any procedure ... And I wasn't going to let that happen today (without trying). I called the other hospital to see of they had an opening and lucky me, they did. I ran right over as Danny was still napping and he had 2 nurses, our great RT, and my good friend looking after him. Wonderful!!! I was done and back before anything took place....well surgery related. I guess Danny really liked Puff's new settings, on his nap, and when he was taken off, when he awoke, breathing was a priority. The belief is because Danny has been breathing like this for so log his brain is used to it and when Puff was breathing "normally" with a "normal" end tidal it took his drive to breathe away......about 5 minutes later he kicked started and was breathing on his own. YIKES!! Needless to say the settings were changed again to maintain a Lil higher end tidal so he breathes on his own when he's not on Puff.
ENT was able to put Danny's right ear tube back in and readjust the left. Get this the O.R. Came up to Danny's room and did the procedure there. Only Danny....as I always say about him AND his father....that's right I'm Dan Osero! What a great crew they were, and they we so nice - loved them!! I wish I could post pics on here but on the CHOW wifi I'm restricted, but those of you that follow us on Facebook you can see pictures on there.
Here's to a better evening. Good nite n sweet dreams from Danny n I. Thanks for stopping by to check on us

Whirlwind kinda day

2011-09-21T18:08:00.005-05:00

Our day started off going to see Danny's neurologist. I had some anxiety going there, Not only because we were going to talk about Danny's "episodes" but also the appt was at the hospital where Danny was born. Eeeeek! I have issues just driving by there and now I had to go INSIDE. Thankfully Danny's nurse was with so she could help ease my nerves -I think I did pretty good :). It is believed that due to Danny's brain damage and where the damage is located his autonomic functions are not functioning properly and he's having dysautonomia "storms". He just can't control the adrenaline overload that happens when these storms come on. Hence why he has this fight for life actions, holds his breath, heart rate increases, sweats, extreme nystigmas with his eyes. I sent his neurologist a video of his storm (episode) and he described it as "impressive" ..... Um I guess that's not good in the medical language :(. The concern is that his heart will go into an arithmia or he'll forget to breathe, or .......... Let's not go there! Dysautonomia has no treatment and it's a progressive disorder, so wer are going to try and suppress the storms the best we can without compromising what "normal" functions he has. We are going to "try" him on a beta blocker med and see how Danny reacts to it. The only concern there is it will drop his already low B/P even lower AND it will counter act the albuterol if he should need to use it. Thankfully we don't use albuterol often and he is not on it now so we are going to give this new med a whirl and Danny will be the deciding factor if it works or not. Thankfully we are In the hospital to try it out JUST in case Danny throws us a curve ball - which leads us to the rest of the day.
The time has come..............to bring the vent on board. A step I knew was always in Dannys future ....I was just hoping to put it off for a longer time, but as always it's in the best interest of Danny. Which also ties into the dyautonomia .... His Automatic funtions are not doing what its suppose to do He just doesn't regulate well when sleeping and will tend to "pause" his breathes while sleeping. With having 3 respiratory illness just this summer and his labs going haywire now we are putting Danny on the vent. Right now it will be on only at nite and when we sleeps. I hope n pray it stays that way for a VERY VERY LONG time!
It was so weird coming into CHOW "healthy" .... We usually come to the floor via ambulance or O.R. that I didn't even know where the admitting office was - LOL. We unfortunately did not get on the floor we would have like to, but we have framiliar faces here too. It's that this floor AND this room doesn't hold the best memories for us. It's where he was back in the summer of '09 for 75 days straight. YIKES!!
In true Danny form he is being SASSY since we've been in the room and hooked up to monitors because he's been setting the alarms off left n right. Danny you are NOT sick, KNOCK it off!!! So awake, but drousy, he is on oxygen, grrrrr. I AM going home Saturday MIster and you'd better shape up. I cant wait till they put the vent on him later..... can you say alarming party in Danny's room tonight - anyone want to join us??
Tomorrow the ENT is going to put ear tubes back in Dannys ears .... Seeing we are here and he has fluid behind the right drum and with being on a vent that potentially could be very discomforting. BUT my dilemma is I am going to be gone for my MS infusion tomorrow for aprrox 3hrs ..... I've never NOT been there for him during a procedure so I hope and pray it works out that I will be here when he goes down to the O.R. Its so wonderful that the ENT can make room for him, but........... Thankfully my good friend will checking in on him while I'm gone so I can relax alil about it.
I think I'm going to HAVE to run next door to Froedert and get me some Ice Cream tonight :). Please pray for an easy transition for my Lil Man and the vent. I am geared for the worst and hoping for the best.
Stayed tuned............

Back to the "Schedule"

2011-09-15T10:33:00.005-05:00

Well school is back in session and we are adjusting to our busy schedules of therapies, swim, school, and programs. I am very excited to see what great things this year is going to bring to the Osero Household. Both kids have great teachers/therapist....and of course Mom, heehee.

The kids School Pictures this year! WOW ~ did they grow up

Yesterday Danny had a WONDERFUL day with PT Peter. Here is a video of my Lil Man working so hard. Not only is he standing tall in his stander, he's holding and moving his head, tracking things, swallowing right, following what we ask of him to do, and trying to communicate....some may not see the BIG picture and think this to be nothing much, but this was a GREAT day for Danny :)

Here's alil video of Avrianna and her friends....Jammin away to Wii Dance. You can't help but smile watching them. They LOVE the Wii!!

It's that time of year and once again Dan is out hunting trying to find that Big score.....after 8 yrs of waiting for a bear license in WI he has his opportunity to get a Bear. Here is the HUGE beast that has been hanging around his stand. I told him he'd better be a good shot, cuz he's going to be an appetizer to this thing. AMAZING!! and Crazy that he wants to go in the woods when this Teddy Bear is there....NO WAY!

Last nite The Fox Valley Wave Swim started for the season. We are back in the swim of things. She will be swimming 4 days a week for 75 minutes and she will be participating in 6 different swim Meets throughout WI between Nov - Feb (Meets usually consist of Sat & Sun and being in the water by 8am -about 11)

We FINALLY got a watermelon ripe. We JUST picked this 2 days ago ~ this is the 3rd one we've picked but the first one that was ripe enough to eat. Not sure we are going to do Watermelons again. BUT boy is it delicious!!

Our Tomato canning stash from this years harvest.....BUT a mental note IS ~ Do NOT trust Dan's sense of "heat" as ALL OF THESE ARE TOO HOT for us to eat. The recipe has now been rewritten and there will be NO MORE crushed red peppers put in. YIKES!!

It's a good thing that we harvested everything out of our garden....this morning there was frost as the temps were in the low 30's last nite. Um BRrrrrrrrrr ~ I'm not ready for this!!

Next week is going to be a busy one medically ~ per say....
First we have an appt to see Danny Neurologist and talk about what's been going on with Danny. He's FOREVER changing his neuroligical status and with the last EEG showing no active seizure activity during these episodes we have to figure out what's going on during these and see if they are causing more damage and/or if they can be treated. My gut says not so many good things are happening with him as they are coming on more frequently and intense :( Despite his smile and laugh these are NOT FUN! More poor bug ~ even the neurologist stated how heartbreaking it was to watch Danny in this video ;(

Straight from that appt is down to CHOW for a 4 day stay to get him set up on the vent. So Dan will be on Avrianna duty....god help him ~ LOL. I'm anxious about the vent, I'm not going to lie. I'm all for helping Danny's and giving him a better quality of life, but it's just scary step and I'm sure it's going to be very frustrating to get the vent to play nice with Danny. NOTHING goes smoothly so I'm already anticipating a struggle :( But we will get through this too, one day at a time, I'm sure of it!
Thanks for stopping by and checking on us!!

Where were YOU the day the WORLD STOPPED TURNING

2011-09-11T10:35:00.004-05:00

Well it was 3 DAYS after our wedding day. I was working at KD Auto Glass in Oshkosh, WI, I ran the office there. In the waiting room which was separated between a piece of glass I always had the TV on so I saw it from the beginning of the footage on the news. I called Dan at work to have him turn on a TV and watch what was unfolding before my and the rest of America's eyes. Within minutes Dan was at the front door of my office and we watched the second plane hit the second tower together....In total disbelief of what we were seeing.....Could this really be happening? Not much was accomplished that day....it's like everything froze in time. Some of the out of town Family members were stuck at our place as their flights were cancelled and they were in a forever limbo NOT knowing what was going to happen
We were to be leaving for our honeymoon in a couple of days, BUT with the flights out they could NOT guarantee we would be in Miami in time to get to our cruise. The cruise lines were still running full tilt and were NOT offering refunds as 9/11 hadn't effected their industry. So I called my grandparents and asked them to help Dan and I drive down to Florida so we could make our cruise on time. They resheduled their lives for 2 weeks and drove us down and back home. They have a condo down there so they stayed there while we were on our honeymoon. I remember my mother being SO scared and not wanting us to go, as she thought that possibly the cruise lines would be another target. Regardless of her fears we went and had a wonderful time..... on the ship you had this feeling of "safe and normal" once again, even if it was for just a little while.
I will NEVER forget!! For the husband who told his wife he loved her before his plane went down. For the wife who stopped in the stairs to call her husband to say she will love him forever. For the mothers and fathers who kissed their kids goodbye that morning for the last time. For the policemen, firemen, and other rescue workers who rushed in to help others and lost their lives. For the soldiers who fought back and made the ultimate sacrifice. Today, tomorrow, ten years from now, we will remember ♥
My favorite song of all time........Thank YOU to the men and women that fight to make our country the way it is today.....Our freedom DOESN'T come free there is an ultimate cost that I will be FOREVER thankful for

Make A Wish Walk

2011-09-11T10:03:00.008-05:00

Yesterday Sept 10th was the Make A Wish Walk in our local area. What a BEAUTIFUL day it was not only for a walk, but to walk for a GREAT foundation. My team, My New DreaMS, was able to collect $716 this year. THANKS to ALL that helped with Making A Wish come true to these wonderful kids!!

I LOVE these two SO VERY MUCH!

We met up with our friends the Balogh's ~ THE WISH KIDS

The Whole Crew(ps..Danny was in the middle of one of his episodes that puts him in a laughing fit afterwards so I took advantage...I know I'm awful, but look at the smile. It makes them worth it to see him smile ~ sigh)

We walked through the grounds of Thrivent Financial once again. What an amazing area

We were excited to have met this special Lil guy Charlie. We've been following him for a while now on his progress and it was a pleasure to be able to meet him in person. Thanks Charlie for being interested in Danny and allowing us to have your picture taken with him.

There were approximately 300 runners/walkers there. How inspiring to see :) There was one family that through the years of donations has donated over $100,000.00, and another over $25,000.00 ~ WOW! Our goal has just been elevated ~ hoping to increase our donations next year and the years to follow ~ until next year!!

Thanks again for participating in Making A Wish Come True ~

Mattman

2011-09-07T09:37:00.009-05:00

Our very dear friend passed away yesterday morning @ 3:37am in the loving arms of both his parents.

Matthew Ray Eakins 8-31-06 ~ 9-6-11

I'm just in shock and deeply saddened that he had to leave us so soon. I hope he is flying high, running around, eating as much as he can, talking up a storm (like his awesome Momma) and causing tons of trouble. He didn't get the nickname Rottenpants for nothing ~ LOL

My family and I were very proud and blessed to have met him. He was a wonderful Little Man that touched our hearts unlike no other. Please HUG your little ones alil harder and alil longer......life IS short and you never know what tomorrow will bring.

Live LIFE to the fullest as if it was your last day and have NO regrets!

WE LOVE YOU MATTMAN our hearts are broken and you WILL BE MISSED!! Fly High sweet boy FLY HIGH!!

Enjoy some of the pictures of Mattman ~

Matt brought his family to our place in Dec '10 to be our special guest at Danny's birthday party ~ what a great time. Then they got stuck here due to a nasty blizzard.....yay more days with Matt.

Double trouble!! Mattman met us at the St Louis Science Center this summer on our vacation ~

Mattman and his awesome Momma ~ Heather!

Our thoughts and prayers will be with the Eakin family ~ May they find peace

4th GRADE!!

2011-09-01T17:15:00.009-05:00

Today was Avrianna's first day of 4th Grade! Wow where does the time go!

Up early and excited for her first day....she was ready. There was a little anxiety with getting the new teacher but after meeting Mrs Froehlich at the Open House all the uneasy was wiped away.

Mrs Froehlich and Avrianna

Mrs Renning ~ Principle of Lakeview

I hope for exciting new things this year :)
Looking so professional and grown up!

Waiting patiently for the day to begin.....
And she was off.................
I was waiting patiently at the front door for her to return to tell me all the wonderful things that happened on her first day............................for her to walk in the door in tears. OH NO!! Well school went great, BUT it all took a back burner to the school bus ride home. UGH!! The bus driver isn't the nicest from what I'm hearing from other friends.....but she missed Avrianna's stop and went around the block and when Avrianna was telling her where the stop is, the bus driver argued with her and dropped her off down the road not even at a stop. Avrianna told her that wasn't her stop but proceeded to make her walk home. Needless to say Avrianna was very upset about it all....and so IS MOM. I got on the phone right away with the depot to find out what was going on, for them to argue with me, WTH. You've picked the wrong Mom on the wrong DAY to argue with. He told me that it could be because the district changed the drop off, um excuse me you drop children off at a different stop WITHOUT telling the parents....UNACCEPTABLE. He checked and found out the stop is in the regular spot so what was this drivers issue? I am and will continue to be on top of this ... I'm hoping things/attitudes change or Avrianna WILL NOT be on the bus any longer!! I don't need to worry if my kid will be dropped off in the right place because this bus driver has attitude. On the first day NOT a good impression!!!!

Danny will be starting his 2nd grade year soon...once the team is put together they will contact me and we can set up a schedule for them to come out to the house. Danny will be having a new Teacher this year too, and we can't wait to see what new and exciting ideas she has. He will have the some OT, ST, and vision therapist which is great as Danny tends to take awhile to warm up to new people. Unfortunately Neenah hasn't hired a PT yet so we'll have to wait and see. We have alot of fun stuff, to show them, with what Danny has been working on over the summer :)

Here's Danny working hard with his Private PT Peter :)

My new hobby ~ sewing!! I'm making covers for Danny's wheel chair and "hub caps">and a handbag for AvriannaNot too shabby for my first sewing experience....watch out Martha Stewart ~ LOL

Special Swim

2011-08-28T09:27:00.007-05:00

Yesterday was just AWESOME over here at the Osero House. We threw our 1st Annual Special Needs Swim Party and I couldn't have asked for better weather for these kids :) What a great turn out we had too. What an AMAZING group of friends, no FAMILY! I don't know what I would do without these guys....We LOVE YOU GUYS!!
What a HANDSOME bunch of pool boys we have :)

Lil Man :)

The Randall's ~ How cool (I guess in my warped mind) I went to school with Amy, Our Daughters are in the same grade n school, and our sons are "Special" n trached. We are NOT alone in all this!!Danny and Griffin ~ Did these guys get HUGE or what! I'm telling ya the Packers missed out on two great front liners!!Griffin brought his family with him......Even Baby Emerson's got to met all of us :)The Prindle's
The Balogh'sThe Giebel'sAfter the pool party Dan and I went on a Date Nite ~ We went out of Dinner then off to see Boogie and the YoYo's play in Greenville. AMAZING nite!! Stayed out till 12:30...I can't remember when I was up that late for something other then kids and medical alarms.

GREAT GREAT time !!

All dolled up AND SOMEWHERE to go ~

Eric not only an awesome Guitarist and vocalist but a great Architect ~

Thanks for checking in on us. Please don't forget to Pledge HERE on our Make A Wish walk coming up on Sept 10th. YOU can make WISHES come true !!

Venting

2011-08-16T20:56:00.008-05:00

Today Danny, Gail, Avrianna and myself spent the day at CHOW. WOW what a day! First appt was xrays of spine and hips then off to chat with the results to the doc. Good news his scoliosis is stable, NO rod lengthening ..... for now. His bend is 35 degrees right now which is less then what it was when we brought him in for his first lengthening .... which that was 40 degree. He's GOOD!

The docs really hoped that I would stay on course with EVERY 6 months for growth, BUT the curve is stable and I'm not going to put him through a surgery that doesn't need to happen yet. So in another 6 months or so we'll come back for more xrays and see then.

Danny's hips look great. I finally got to see an image without the right hip.

The left looks perfect...the muscles are what are giving us some grief. Danny is majorly frog legged .... luckily that is the best position to be in to preserve the hip n socket "relationship". So frog legged he will be :)

Avrianna was being such a good trooper ..... this was really her first time spending the day with appts in CHOW. She did GREAT!

After ortho we were off the trache/vent clinic. We got to see dietary and there is some concerns with his weight and puffiness so we have dropped down his formula even more. YIKES!! Danny will now be getting ONLY 19 oz of formula with 11 oz of water A DAY! We'll see how that goes. ENT came in and the wonderful non allergic ear tubes that were put in this spring are already out on the right side. The side that is ALWAYS infected, ugh! BUT it looks great n healthy right now so ENT wants to watch it and see how it goes. My gut says we'll be putting ear tubes in soon. Pulm was next.

Then onto the pulmonolgy appt. After much consideration, labs, and xrays.......the decision is made that Danny should be on a ventilator, for right now only at night. Danny has healthy wonderful lungs BUT he is not ventilating properly, which means he's not taking big enough breathes. His CO2 & blood gas levels continue to creep upwhile we still need to increase his oxygen levels to keep his sats up. We are fighting against each other. Vent it is. UGH! His lungs won't inflate big enough on their own anymore, BUT not because of his lungs.....the belief is this it's all stemming from Neurological damage. AGAIN with that!! Danny has an EEG next week and then we'll be seeing Neurology next month so we'll have ALOT to talk about...I hope they pencil in alot of time for us cuz the Doc isn't leaving until I get some questions answered! Unfortunately we (the nurses and I) have noticed some progression with Danny's decline, very low heart rates, shallow breathing, and lack of breathing while sleeping so I'm hoping this vent gives Danny a "jump start" to thrive. As I know it's only a matter of time when he'll just forget and stop breathing....ugh I think I'm going to throw up. I know this is all nothing I haven't heard before FOR YEARS, but when reality is here, it's .............. well upsetting. I'm trying to stay positive and strong but the feeling of anger is taking over. WHY my sweet Lil Man?!?! How long will he fight?!?! I just want things to be boring for us, is that so bad......I'm all over the I want normal I just want stable, just for alil while, is that too much to ask. AND STOP THROWING THINGS AT MY SON, HE'S HAD ENOUGH! We've had ENOUGH! This too will become our new normal and it will be like everything else, no big deal. It's just having to make these decisions over n over n over n over n over..... well you get the picture.

It's amazing, like I've said before, how much you adapt and they way you think changes as you go. If someone would have told me Danny would be on a vent even 3 years ago I would have disagreed with them. Then I've met wonderful kids on a vent and they are "still there". Does that make sense? I always had this misconception that vent would take way "Danny". He wouldn't be the same. As long as Danny continues to fight then I will do EVERYTHING and ANYTHING to fight for him! Once Danny isn't Danny anymore then we'll have some major decisions to look at. Now that Danny is labeled "vent dependent" that changes a few things around here for the nurses so they are off to training and let the paperwork BEGIN.

After a long and draining day Danny is napping ~ if only I could explain this all to him so he knows why :( ....... I LOVE YOU SO MUCH !!

While we regrouped at The Cheesecake Factory. That made it alil better.

Here is a picture from Dan's Deer stand camera ~ YIKES!! I think he's NUTS so go out there and sit in a tree with these cute bears around ready to eat him. A Momma n her 3 cubs!

Girl Scout sleepover N Stuff

2011-08-15T09:29:00.012-05:00

Thursday nite into Friday we threw a Mom n Me Girl Scout Sleepover. Great times!! Everyone got along, and it looked like everyone had a great time.
Our sleeping area for the nite :) This is in the back of our yard.Pool time !!
Our Troop Leader.....she's great! Thanks Michelle for all that you do with our girls
The Girls! What a great group we have :)
Some of The Mom's
We had projects and activities planned but all they wanted to do was SWIM!Danny had to put on his charm seeing there were many pretty girls here....my flirt :)At the bon fire roasting smores!
All tuckered out and sleeping. I'm amazed that 11pm and they were all pretty much out. Gotta love all the pool time :)
Before 7am and they are already back in the pool...........Brrrrrrrrrr!
Our Garden is growing like wild fire once again this year. I've already canned 4 quarts and 8 pints of tomato sauce and the tomatoes are just starting to turn red, holy tomotoes :)

The zucchini well .........

Tomorrow is a fun filled day at CHOW for appts with Lil Man. First is xrays of Danny's Spine and Hips then to chat with Ortho on the "findings" of the xrays. My gut says we are going to see some issues with Danny's left hip now but the pic

tures will tell. I think Danny sprouted too so we'll have to see if he is due for another growth on his VEPTR rods. Danny really likes to keep Ortho busy. After ortho we head to Trache/Vent clinic, another interesting appt. Not only because it's about a 2 hour appt (we see about 5 docs/nurses, it's great they come to us) but we've been dancing with the putting Danny on a vent at nite so now that the Pulm Dr and I will be face to face we'll be making some big decisions I'm sure of it. UGH ~ I feel sick already!! I made an appt this morning for next week...Danny will be having another 48 hours EEG done. Then when we have our appt with Neuro next month we can talk about the findings on that with him. Let the appts begin!

Avrianna has been a busy bee making more Tie Dye things....she's getting really good ~ My lil Hippie!

Last weekend I had an Eye Candi Open House party here at the house....and despite the crappy turn out we had a nice time. I think we'll have to do another one in the fall when everyone istn' so busy. Of course my buys!! If interested in checking out her stuff click HERE

Danny is enjoying pool time ~ it's been so brutally hot here so pool time is a MUST :) We even have Danny's Physical therapist doing aqua therapy now too. LOVE IT!!

Well school is approaching us...wow, where did the summer go? Registration for Danny is this week. I'm interested to see how this year is going to play out, as the Special Ed teacher is no longer there so there will be a new one. I'm hoping that the school district gets a teacher JUST for the home bound kids, we'll see...... change might be good. I just HOPE that his therapists stay the same! Next week Ms Avrianna has her registration and pictures. We already have all her school supplies and her outfit picked out. She's really excited to see who her teacher is going to be this year.

Here is Danny working on his new iPad2 mirrored on the TV and with the switch interface ~

Yesterday I put together a block party cook out and it was a hit! I'm glad we had such a nice turn out. Watch a bunch of great neighbors we have!! Party Party Party!!

Thanks for stopping by to check in on us!!

Don't forget to pledge a donation in honor of Avrianna n Danny for our Make A Wish Walk on Sept. 13th 2011. Please Click HERE to go to our team page and PLEDGE now. We THANK YOU for helping my WISHES come true with children that have life threatening condition.

Make A Wish Walk & Run 2011

2011-08-07T09:35:00.003-05:00

Please Help Grant Wishes!

Our Children were blessed to have their wishes granted. Danny received his Special Adult Crib with mechanical hospital bed in March '07 which he continues to enjoy his WISH each and every night. Avrianna was granted her WISH Feb '09 which was to go on a Disney cruise with the Princess' and swim with the Dolphins. You can follow our stories at http://oserofamily.blogspot.com

I'm walking for wishes to help raise funds for Make-A-Wish Foundation® of Wisconsin. My participation in the Walk & Run for Wishes on Saturday, September 10 will help grant the wishes of Wisconsin kids with life-threatening medical conditions. Please consider a pledge to support me as we work together to bring wishes to life for these special children.

A wish allows children to stretch their imaginations, to focus on the positive when courage and hope might otherwise wane, to remain active partners in treatment and to rejoice when the wish is fulfilled. What could be better than knowing your participation will help make these special wishes a reality?

Thank you for supporting me and this worthy cause. You CAN make a difference in a child's life.

Follow This Link to visit my personal web page and help me in my efforts to support Make-A-Wish Foundation of Wisconsin ~ You can Join our team to walk with us on Sept. 10th and help raise Donations or Pledge a Donation from my Web Page.

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Lori Osero

http://oserfamily.blogspot.com

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Join me at Make-A-Wish Foundation® of Wisconsin's Walk & Run for Wishes

Thank you for supporting Make-A-Wish Foundation of Wisconsin's Walk & Run for Wishes.
Our Children were blessed to have their wishes granted. Danny received his Special Adult Crib with mechanical hospital bed in March '07 which he continues to enjoy his WISH each and every night. Avrianna was granted her WISH Feb '09 which was to go on a Disney cruise with the Princess' and swim with the Dolphins. You can follow our stories at http://oserofamily.blogspot.com
Your contribution will make an impact on Wisconsin children with life-threatening medical conditions.
We THANK You!

Vacation Craze

2011-07-27T09:02:00.024-05:00

The evening before we left Dan and I had seriously considered changing our vacation plans do to the HOT temps that were projected. BUT after looking around there really wasn't anywhere we could go in the time frame we had that would have escaped the heat. So St Louis here come The Osero's!

First time I drove The Beast....which is a lot easier to drive then the other one surprisingly :)
Ying and Yang playing with my phoneOld Route 66

Of course it wouldn't be a true Osero vacation without some turmoil......yes a flat tire on the car dolly just 10 miles from our camp ground. On Hwy 44 west just north of the 277 exit there we were on the left side of the Hwy with the right side of the tire blown. Of course I had to be driving when it happened, geez! Poor Dan had to deal with vehicles buzzing right my him.

Thankfully a patrol officer showed up to keep an eye of things....boy are some people just rude! There was a car that almost drove right in the back of the patrol car then hitting Dan and the officer.....HOLY CRAP that was close!!

I took this picture from our rearview camera screen

Dan's head peeking out from the car dolly just as the patrol officer got there.The tire...or what is left of it.Danny's van had minimal damage to it...some tire marks on the bumper and a dent with some tire marks on the door. The fender on the dolly was torn to pieces but it was still usable for the ride home.

We stayed in Jellystone Park with Yogi Bear which is right across the street from Six

Flags. It was a busy place! They had projects going on all the time for the kids to do.

Mom it's too hot....I can't breathe!! Not a lot of outdoor stuff for this Lil Man!!

The PoolCeramic Painting
Candy Bar Bingo
The loot from winner Candy Bar Bingo.....along with the glow Cotton candy sticks.

Say YOGI!Double Trouble!
Twice a day The Train went through the campgrounds and stopped at Yogi's cave to wake him up. Then the kids got to meet Yogi and have their pictures taken.
It was HOT every day! So we did alot of indoor activities, which meant we didn't get to the Zoo or Grant's Farm. That's ok....next time :)

109 degrees just about every day.

Tooling around in the van staying cool ~

In St Louis we had some authentic St Louis style pizza......didn't know there was one. We tried it and I can say we are not fans of it, but we tried it. We also went to Ted Drew's frozen custard ~ AMAZING!! But I guess we went to the small one in the "wrong" end of town, but tasty non the less.

We wen

t to The Magic House/Children's Museum.....what fun that was! Here a few fun picsThe bubble room
The train room
The beanstalk that went up 3 flights of stairs. The kids LOVED this one. Here they are at the top
Avrianna playing the piano that bubbled in the tubes. Danny loved to watch it :)

Which is easier to pull yourself up with 2, 4 or 6 pullies?Avrianna helping Danny with the peds

SMILE!

WOW ~ you really should do something with your hair!

The St Louis Arch ...... what an amazing structure.Avrianna, Whitney and myself went up to the top of the arch.

It is NOT handicap accessible so Danny couldn't go up. There are alot of stairs and the tram is very very very small.

Inside the tram ~

One of the Trams....to show everyone how small they are.The shadow of the arch in the Mississippi river.

After we got back down we all went to a documentary of how the Arch was built. AMAZING!

Guess who met us at the Science Center in St Louis.........................MATTMAN and his wonderful Momma, Heather!! I was so great seeing them again, too bad it wasn't for longer. We LOVE YOU GUYS!!

The Crew!! Avrianna, Mattman, Danny, and Whitney

Ugh......Don't eat me!!Tornado .... so cool
Lots of dinosaurs

A real mummy baby.........WOW

Great show!!Look how up we were :)What an inspiring exhibit. Not only did they have the Body Worlds exhibit but they focused on the brain too. So many bodies and parts there so I could show Dan what is all wrong or needed to fixed on Danny. AMAZING!!
A REAL Brain!!
I told Dan I should donate my MS brain to the Brain Worlds and also Danny's body. So people can see.................

Six Flags !!! It was way to hot for Danny to come out so Dan stayed behind with Lil Man and chilled out in the RV. So it was me and the girls for the day.

The girls first roller coaster ride! We went into the park and started right away...I figured get it over with, right?Two very nervous girls standing in line ~They weren't sure on the ride ..... but once it was over all I heard was AWESOME!! So more roller coasters were on the agenda for the day.Love that I was able to go with my Baby girl.....where has the time gone?

We had to go to the water park to cool down :) I did the red tube but the girls did the Green one too ~ YIKES!

Lazy river baby!!

Sun bathing beauties
Pick a tube any tube they went down itThey went on this ride with me the first time....but by the end of the day they decided to go solo. They didn't need my anymore.....both girls are now roller coaster riders :) Well the smaller ones. They weren't going on any that were HUGE or had any loop D loops yet. Next time :)

I could puke just looking at this picture....no spinning for this momma!!

We were told by some friends that if we got the chance to go to on the tour for Anheuser Bush Brewery. Boy am I glad we did. What a great tour and CLEAN....plus it's free :)

This is the stables.....BEAUTIFUL!! These horses live the life....and again very very CLEAN. You couldn't even tell you were in a stable.
Danny got pampered on the the trolley :)After the guided tour we stopped in their bar for some beverages (again free) with some pretzels.....Bud light Lime on tap ~ ohhhhh yeah!
Love the Clysdales n Dalmatians!

We went to the City Museum and Aquarium ~ I do NOT recommend it. Even though is had alot to look at and was very ecletic it was Filthy gross!!
The slide went from the 3rd floor to ground......her butts was dirty from going down. Whitney wanted nothing to do with getting dirty....can't say I blame her. YUCK!!
The "aquarium" was nothing more then a glorified pet store and again DIRTY!

Heading home :)
We just had to stop at The Cheesecake Factory in Milwaukee on our way home......YUM!
We got home late on Sunday evening....going through EAA in Oshkosh wasn't too bad :) But south bound lanes were closed to a multi car accident...I'm glad we were in the North bound lanes.

Avrianna and Whitney are in in a Girl Scout Camp this week. The program is called water seekers so they are going to many pools. Today I'm jealous as they went to the Kalahari in Wisconsin Dells. Good thing it has an indoor and outdoor water park because to it's raining. They will be sleeping over at the camp tonight, it should be a great time.

Danny is rebelling from being off vacation or he caught a germ at the City Museum in St Louis as....he is having respiratory issues, fever, seizures so I am taking him into see Dr Kasper this morning and time will tell if we stay home or have to go to hospital. Of course he starts being sassy yesterday when I had a whole day in Milwaukee for myself with seeing my MS Neurologist, infusion treatment, and then they decided to do another occipital nerve blockage on the right side of my brain....so I got texts n phone calls from Gail RN all day on how he was doing. I will keep you posted!

***UPDATE on Danny **** His xrays didn't look too hot the right lung is diminished or infilterated so more pulmonary toiletry (I love saying that). We increased his Mr Jiggles, breathing tx, added Tobi and an antibiotic. We needed to go in for a blood gas and CBC so if that is ok we stay home for now....if not....... well you know the drill.

Lightening Strike ~ YIKES!

2011-07-11T21:09:00.009-05:00

ELECTRIFYING EXCITMENT!! I'm telling ya it's something with this house ... or is it me?

On Sunday July 10th 2011 at 11:35am lightening struck on electric box and severed a gas line starting a fire in our front yard. A sound I never want to hear again!! Scared the HELL out of me it was so LOUD...a sound I will NEVER forget!!

Here is a video I took once the electric box started to really roll with fire and spark.

Unknown at that time of the video....my "favorite tree" was already dead as the lightening went underground and blew up the roots in saw dust. So the burnt leaves n branches were nothing compared to the power of the bolt.

And it reeked havoc underground to all the wiring and piping to our home.

Dan and Avrianna were up North for the weekend to bait Dan's bear stand and to pick up Avrianna's cousin Whitney who is going to stay with us for the month. What chaos to come home to right? I'm sure Dan will catch a bunch of crap, for being gone when we have a fire in our front yard, from his fireman buddies ~ LOL

Here are some pictures .......The fireman were wonderful....stopping up at the house to make sure we were ok and seeing if we needed anythingThankfully they walked up to the house and I didn't walk out there.....my not thinking I was bare foot and it was wet out from the rain ..... they firemen said they could feel the electricity under there feet walking up to the house. It would have been all over for me!

Here's the hole it blew around in the ground.
After the electricity and gas were turned off the fire went out.....the firemen still had to cool everything off.The guys assessing the damage......if they only knew what all happened under ground :(
Before they took everything out I was able to get a picture.....they believe this was the point of impact on the back of the electrical box.The water pressure control panel that fried and the pressure tank took a hit too

The cover to the water pressure control panel that blew off the wall about 4 ft.
Part of the electric/gas/cable/phone guys that come to start the repair process. It has only gotten worse from when they were all here. It was so HOT n HUMID on Sunday these guys took a beating!!
All this dug up and they STILL have to go further to get to damaged pipes n wiringTemporary Gas line running above ground through our yardCones everywhere to show were the gas line is and there is just enough space/gap at the end of the driveway so we can get in and out.Black arcing in and out at all our breaker boxes

As of today we have had to replaced or I know that needs to be repaired :

* the water pressure pump and control panel ~ it will be a few days before we find out if it caused trouble down in the well. GREAT!

*they have to dig another trench through the front yard to replace the natural gas line.

*replace the modules in our irrigation system to find out if we need to go further to rewire the WHOLE yard ~ which means tearing up my WHOLE YARD!!

*electricians were here this morning and they found a few switches that were toasted and a transmitter that needed to be replaced.....now we sit in wait to see what else dies in the next few weeks. I was told with this hard of a hit things can just stop working ~ ARE YOU KIDDING ME!?!

* the phone/internet/cable line has been replaced

*TOO BE CONTINUED ~ Sigh :(

North for the 4th '11 & Catching UP

2011-07-07T08:32:00.015-05:00

Boy does time fly when you are not looking. Sorry for the lack of updates, but no news is good news in this case. We've been very busy around here this summer. We all have been doing good. The heat is the killer for me so I try to stay cool as possible. Danny has been doing great (knock on wood) he didn't even require oxygen at night the last two nites. I think he might have finally gotten over the allergies (only 4months, grrr).

Wednesday I through a surprise baby shower for my girl friend, Connie ~what a fun time that was. I actually pulled it off :) I made more cake pops n truffles. (truffles are mint, peanut butter n regular)

I think we're going to name our "business" Lil Sweet Temptations. That sounds appropriate and YUMMY!

Avrianna had a mishap with her bike and flip flops. Tearing the tip of her toe, YUCK!

and bending her rim. How does that happen.....really? Cheap!!!!

Thursday Avrianna performed her Play (a remix of Wizard of OZ) that she has been working on in her summer school drama. What a hot day for that, but the all did great.

Tater Tot

The Crew

Aleana and Ila came to watch too....it's so awesome to see that both nurses were there to wat

ch Avrianna in her moment. They are not just for Danny.....they are our Family!!

After the Play we all went for Ice Cream and the went swimming in the pool.

The Wentzel family :)

We took out the RV for it's first Osero vacation up to Tomahawk over the 4th. We had a great time........

In Rhinelander we went on a Dinner cruise on the Wisconsin River ~ What nice relaxing time :)

Beautiful

Handsome

Entertainment too

We went down to the Dam and then turned around

We went to The WildwoodWilderness Zoo in Minocqua ~

They were very accommodating with Danny and brought animals out for Danny to hold n touch.

They are very hands on there and there were animals running free every where :) Highly recommend going here.

The goats liked to try n eat Danny's chair
Armadillo
Capybara ~ large rodentChinchilla
Hitching a ride

I gotta get me one of these.....so damn CUTE

They have a sanctuary for injured birds......Beautiful Bald EaglesLEMURS!SPIDERS ~ EEEEEKKKKK!

Here Kitty Kitty!!!! This Jaguar was "into" Danny. Not sure if that is a good thing or not. He just sat and stared and my Lil Man ~ YIKES!

Feeding the bear "Bear Juice"

Bird Lady....she got 15 birds to land on her food stick

We watched the Kawhamot Water ski show .... Papa's house is right across the river from the show. Only in Tomahawk can you spell your city backwards and get a name for your ski team :)

Happy 4th of July!!!!Staged and Ready to GO in the 1 mile FUN RUN ~

She's OFF ... Good Luck and Have Fun ~

Here She Comes ~ GO Avrianna GO!

Cheering on Avrianna!!
We have a 1st place winner ~ Gold Medal winner

WAY TO GO AVRIANNA ~ 1mile in 7:30!! 1st place girl in her age group and placed 16th in the 63 kids that ran

We're ready.....is the parade starting yet?

Watching the ParadePapa driving his Military Jeep ~ with the Legion Commander
To The Hunt ~ A documentary made of Tomahawk hunting shacks. One of which is "The Newwood Club" founded by Dan's Grandpa. Dan is in the movie too AND he's pictured on the cover :) Kinda neat!After the parade the Tomahawk Firemen have water wars..............Then spray the crowd ~ Fun times!When it's all over..........two drenched kiddos :)
Capt. Papa ~
I think Danny like it.......
Now what a scene ~ Tranquility on the Wisconsin River!
Danny n I had an awesome view of the fireworks free of bugs in the front seat of the RV :) It was GREAT ! Dan n Avrianna went back on the pontoon to watch the fireworks on the river.
Driving on the way home ... I looked up and THUMBS UP from our Angels :)
I hope you enjoyed the pictures of our vacation :) I know we had a great time making more memories! I hope you all had a safe and Happy 4th of July!! Thanks for stopping by to check on us ~

Bored Song N Dance

2011-06-21T21:44:00.008-05:00

Danny went to his first concert last Thursday to see Boogie and the Yo ~ Yo'z. What a WONDERFUL evening to be out. There were no bugs and the temps were perfect! Not to mention listening to some great music. Danny was able to listen to Eric play......his favorite lead guitar player. Not only does Eric play and mean guitar and other instruments BUT he works some magic architecturally. Yes ~ he put the ideas of our dream home into THE PLAN :) Poor guy.... he to work with us, but he does awesome work. It was so nice of Eric to acknowledge Danny being out in the audience ~ Thanks! Next time I will have to get a picture of Danny and the band when they are on break.Too bad the evening was cut short due to a poor attitude from Avrianna and her 2 friends that we took along as she had them sleeping over that nite. So much for me trying to do something nice. I learned my lesson and NEVER again will I take her n her friends out. Avrianna's always wanting me to take her n her friends out when we have someone over. I do and what do I get ..........attitude. They are "Bored and STARVING". Of course nothing there would do to eat so I said 30 minutes and we'll leave, giving us a few more minutes out. .... that wasn't good enough I guess as I was constantly asked if we were leaving yet. GRRRRR!! We left there and I was so upset and disappointed in the girls. They knew to stay clear and be quiet through dinner. I reminded them about how good they have it and I let them have it about being bored. Told them they could all sit in a chair ALL DAY LONG and not move ... then we'll see how bored they are. I was NOT going to tolerate them anymore that night. I was almost in tears I was so upset. I know it really wasn't that big of a deal BUT when Danny is out and everything was wonderful DON'T BUST HIS BUBBLE! Next time it's going to be just ME and My Lil Man to enjoy the night, away if we so choose.

LOVE that smile on his face ~ floating in the waterWe brought out the pool lift and gave it a try ~ I normally just pick him up (I still can do that now, but he's getting pretty big so......)He LOVED IT!And even better he LOVES being in the water. He's got it!!
He had the pool to himself and enjoyed every minute of it :) Take THAT!! I was told I wouldn't be able to get him in the water again when he got the trache.....when there's a will there's a way!

Avrianna and her cousin Tyler ~ sporting their glasses :)

I think the had fun.........

Here's my new Hobby ~ Cake Pops

And Truffles
They are so YUMMY!! And really easy to make. It's the decorating that is time consuming and detailed. Our first time we made them it was definitely a learning curve, but I think we've got it down already. Aleana and Avrianna have been helping me make them :) and the ideas are just flowing. So the house has been filled with these sweet treats. YUM!

The RV is ready! We needed to do some rewiring and altering to get the RV to work for us. The biggest thing was the shower doors had to come off ..... now there is tons of room for us to actually shower Danny in the tub :) Our first trip is around the corner and I'm hoping everything works out. Here it is with Danny's van attached to the back. The paint colors match perfectly...I couldn't have done that better even if I tried :) The green color is exact! I can't wait to drive it to see how it handles. Watch out here we come!!

The weather is still gloomy and blah around here with rain and overcast, but by the weekend I heard the rain might finally leave us for awhile. My plants are still loving it though. My Knock -Out rose bushes are just beautiful.

The garden is coming along too....I think some sun and warmer weather and it will just take off!

We are Blessed NOT Burdened

2011-06-17T08:24:00.002-05:00

Special Needs Child-We are Blessed not Burdened
Poem written by my good Friend Kristi Mason

Just HAD TO share!!

You weren't like other children,

And God was well aware,

You'd need a caring family,
...With love enough to share.

And so He sent you to us,

And much to our surprise,

You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,

The pleasures you impart,

Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,

To help you learn and grow,

The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,

A treasure from above,

A child who's taught us many things,
But most of all "Real Love

"Blue Sky July" A Mother's Story of Hope and Healing by Nia Wyn

2011-06-15T11:10:00.003-05:00

I had just read an inspirational book about a mother's story of raising a Special Needs Child and I had highlighted MANY points that touched true to me and my feelings. Danny's nurse Gail is reading it right now and had made up this wonderful page for me full of the quotes that I had highlighted in the book. I had to share :) I hope you enjoy them
Thanks GAIL!!
*************************************************************************************I’m nothing like the girl I used to be
"The need to heal him is overwhelming
Beyond sense and reason.
He is not my nightmare.He is my son… I am lost in him.
… Joe has severe cerebral palsy,and if there is no cure,I want to explore his world with him.
I want to paint it brighter colors.I want to turn the music up.
I want the world to know he’s special…He gives the world unbearable intensity.He gives me insights I could never have understood without hime, and he gives me heartbreak.To separate these two responses would be impossible. He is equally beautiful and terrifying.
We’re ghosts of ourselves by the time we get here.
It is another world, this network that collects us from the mainstream.
He doesn’t reach out. He never does.…he doesn’t say or do anything,… nothing to work with, that there’s “no initiative”.
I want to know my son.I yearn for something to believe in.
This sadness still swallows me whole as the moon.
He has a will
WHERE DID YOU FIND THE WINGS TO FLY?
He complains he can’t get a look in,and just can’t reach me anymore.
Love revolves around…signs of a past life that has lost all meaning.
Today I feel so lucky to hold Joe in my arms,and feel his heartbeat next to mine.
He feels my love.
My arms move for him, my eyes see for him; I bring the world to him.When I’m despairing, I always turn to him,to what I can touch and hold.
We are one. Quite inseparable.
We’ve lost an intimacy, Alex and I. We’re out of balance. He says I’ve disappeared into a world that he can’t access and that I only think of Joe these days. He says he feels left out, as if he’s running ahead or falling behind, as if we’re journeying without him. Alex says there’s no love anymore,no love life.…wonder how I ever got to war with my world … life’s a bitch!
Others say God chooses special parents for special children. Alex laughs when he hears this one. He says he still remembers his press trip to the orphanages in Minsk, where thousands of special children lay abandoned in iron cots, staring at the ceiling all day long.
We share one heart; we share one will. And sometimes we’re such separated souls

nothing worse than being with someone you love and watching the distance grow between you.…somewhere in the process we have shrunk ourselves. It’s too late to piece back together what is falling apart. Perhaps I don’t want to deep down. Perhaps there just isn’t the time.…like we’d been given “a life sentence”, with no explanation of what we’d done to deserve it.

ordinary days, the most extraordinary things can happen.…I need to find myself again.…it might help to write…

I don’t know if Sian knows what it means to me when I see the way she talks and plays with Joe, and when the sound of their laughter reaches me as I’m lying quietly listening, on my bed

…it’s amazing what hard work, love and faith can bring …it’s so important to appreciate what we have, while we still have it

I need to join the world again.

It is what I would have wanted for him had we been normal, and it is what, after countless sleepless nights, I still want for him now.
He is accepted....And to me it is enough. They don’t know him like I do. It’s the little things that make wonder. Sometimes I wonder if this happy child,that smiles and giggles by my side,might also want to die one day.Sometimes I wonder if the time just comes when it seems easier that way.
The world’s a topsy-turvy place,and despite all his best intentions,Superman still can’t move a muscle
it’s more important to be loved, than cured.
…one less barrier, one less thing to fight against.I am beyond the staring now.
Today I discovered that fear comes second to love.
The experts don’t see Joe like I do.…they don’t appear to listen to a word I say. nothing’s black and white,that kids can’t really be defined,and I’ve learned to take,one daybreak,at a time.
It’s hard to consider what is “necessary and adequate” for any human being.Especially my child. His is the life that sustains me,the blood that stops me growing old,his is the hand that when I die,I’ll want to hold.He’ll always deserve better.

The physical separation has a unique numbness to it.We can’t complete each other anymore.

I can’t stand the fact that I can’t heal him.
My whole world has cerebral palsy, wheather I am with Joe,or not.I’ll never give up……my heart’s become a warrior’s shield……I grow enough to know,that life is what we make it,with a child like Joe.…
when it was silver and nothing was broken,and there are times, just for moments, when silver turns gold.Life feels good enough to celebrate,exactly as it is.…I have arrived at a place called Acceptance.…life is reaffirmed. Generally the bad days don’t floor me like they used to.“Your lucky”, I say, “because you have two that love you, and to be loved is better than anything.”
For all life’s tragedies,I still believe in miracles.It’s him that gives me strength to fight for him forever,and the strength to claim my life back.…changed the way we see things… He’s changed the way we think and the kind of places we find meaning.…changed the way we grow.…we feel things more deeply……an inspiration…I have learned…never to underestimate children.I see that all kids are different,I see that all kids are special.Because sometimes, even if just for a moment,I wish you could imagine what it’s life for me.Just for a moment I’d like you to know,that within the shadow,there is a constant interference of light.…I wonder at how much he’s changed me, and the ways I’m so much stronger than I ever was before.…I appreciate far more.

If, without him, I’d ever have confronted life,and cared and fought for anything the way I have for him.
If I could have ever learned
all I’ve learned through my heartbreak…
Standing here a thousand things can cross my mind.
My heart has reshaped a thousand broken pieces,and for every moment I still want to heal him
there are a thousand when I know he’s perfect,
exactly as he is.
The most profoundly beautiful, and exquisite, moments I’ve ever had have been those I’ve spent with Joe.
…that my life is as big and as close as life gets,
and that I am truly,
We are still the proudest parents in the world!

Summer?

2011-06-11T08:55:00.012-05:00

Catching up so it's a long one! Well really when isn't it ~ LOL.
Summer, or should I say winter, break has begun. Wednesday was the last day of school (I have a 4th and a 2nd grader now, OMG) and the temps were in the 90's with the heat index just about 100. For only the weather to drop out of the sky on Wednesday evening after another storm that passed through (yes we've been in the basement ALOT this year already) and now temps have not even reached the 60's. NOT NICE! I guess the weather is going to start to be more "normal" next week, so until then we really had to turn on the heat ~ in mid June???

I do have to say the sky was in all sorts of colors and clouds with this storm...unlike any I have ever seen.

The North West side of our Home

The South Side ~ Love the lightening strike!
Directly above our house ~ These are so COOL!
The East Side
With the end of the school year the school has been doing alot of fun activities for the kids. Here's Avrianna with her Principle Mrs. Renning at the Ie Cream Social... what's better then ice cream at school?

On Tuesday Dan and I volunteered to be chaperone's for a Field Trip to the Milwaukee City Museum. Not the day to be stuck on a school bus with temps almost 100, but the kids all had fun. Avrianna really liked the Butterfly exhibit ~ Or did the butterflies like her being there?

My bushes and plants are loving this weather. I LOVE the blooming flowers. The Rose bushes have buds on them but just haven't opened up yet, I can't wait!
The GREAT Hunter staking his ground....waiting patiently. You'd think these animals would get a clue and know by now that if you are in the yard YOU WILL BE CHASED! This week alone he's gone for 2 sand hill cranes (twice), deer, a turkey, and a cat. Really??

The pool is OPEN and it's getting alot of use already

My Sunbathing Babes! Oh Tis the Life!!
My good Friend Joe came over this week and put some "Personality" to my car....Thanks Calico, as always....I LOVE IT! You're amazing and so detailed ~ THE BEST!!
Check out my @$$ ~ LOL
My family symbol on the driver door :)Can you believe ALL of it free hand....it's an awesome thing to watch :)
Last night was the first night in some time...like since Feb/March that Danny didn't need any Oxygen through the night. I can only hope we can give that machine a break now for a while. I have an email into the Pulm Dr to see if we should put Danny on a C pap machine (ventilator) during the nite to help him breath and open his lungs, which we hope will slow these respiratory illness's down a bit. The Dr has been out of a couple weeks so hopefully she'll back to us with her opinion. We went down to CHOW on the 1st for appts with Danny but it was really a flop. Danny was able to get into see the ENT for a follow up with his ear, which is still draining...the Dr sucked out the goo (GROSS) and had it cultured. The culture came back with no bacteria but now Danny has a fungus there, great ~ NOT! From ENT we were suppose to see GI, suppose to be the key word here. We haven't seen a GI, other then when we've been in house in a LONG time. It's way over due and still ticking. Appts were running late that day and I had to get to my treatment on the other side of Milwaukee (I couldn't miss it) so we walked out of the exam room before the GI Dr even got in, UGH. I'm looking at see if we can get Danny into one of the GI Dr's that satellite here in the Fox Valley, as the one we would like to be followed by is nearly IMPOSSIBLE to get into see :( With Danny improving in his health we've been working his Lil Butt with therapies as he's been laxed with them this last school quarter. I'm sure he's thinking he thought it was summer break....BUT not with him. So back to work for him ~ LOL.

I've been a busy bee with end of school activities, dental appts, doctor appts, getting the RV set up, planning my summer activities. It's going to be a CRAZY busy summer..if it all goes smoothly it should be a FUN time. I have 4 possibly 5 parties planned here....Support Group meeting, Brownie/Junior bridging camp out/pool party, Eye Candi party, and a Block party. I'm looking at putting a get together with some of our "old" friends with their families....amazing when we all have families how time flies and we grow apart. It would be nice to start an annual reunion with them so we can stay in contact :) We have a family vacation planned to St Louis this summer and we're all excited to go. We just hope it's not so ungodly HOT. When we get back from there "A" goes to a week long summer Girl Scout camp. So READY.... SET.... GO for this summer!

Salon Osero was up and running....I had to wash those grays right out of my hair and then (with some help, thanks Gail) added some highlights in it. Now those grays will be camouflaged more and harder to spot :) Lil Man had to get a serious hair cut ~ He's so HANDSOME!!
Getting into clothes that fit better has been so emotionally lifting...there isn't that constant reminder EVERYDAY that I'm getting bigger. If you don't look at the # stamped and the back of the clothing it makes it easier. As long as I can feel good and look good, really what do I care. Not to mention going out on a shopping spree was a BLAST! I so appreciate all the kind words and support from my last post. Unfortunately there really isn't anything I can do. I'm eating right and exercising, but with the meds I'm on to control my MS and a DYSFUNCTIONAL thyroid ... I have to roll with the punches. I can only hope my thyroid decided to swing the other direction (which it tends to do) and I start losing some of it. I just had to post about it, get it out, and then I'm MUCH better. I'm so glad I was able to help others with it...that's the whole point of the blog. I received many private messages thanking me for posting as they too were having issues, thanking me for speaking up. Well you all know me by now ~ I say what I feel, I tell you what's on my mind .....even if it's about myself. Why not ~ If I don't speak up who will? I'm NOT PERFECT and I'm not afraid to put myself out there. My whole hope for the blog, the whole reason I started it is for an outlet for ME and OTHERS. ENJOY! We LOVE you guys and we're always excited to see you stopped by to check in on us.

Some of my favorite pictures of the Memorial Day Parade ~

So Proud :)All I can say here is "DOUBLE TROUBLE"!
So Sweet!!!

Piled High......

2011-05-31T21:22:00.008-05:00

With Emotions!

With each and every pair of shorts/pants/capris that did not fit, I felt more and more desperation. I just cried.....I'm overwhelmed! And yesterday was NOT the day to to go out and buy new clothes.... in a larger size. I can't believe pants that fit a month ago are now on that pile that was higher then my knee caps. Some still with tags on them, I bet they would have been cute on....sigh. A part of me just says who gives a shit, it's just a number .... But still pieces of my heart broke with each in every pair that I had to fold up and store away. I worked so hard to get to where I was as I have lost over 100lbs that last few years and was feeling great and looking wonderful. I am no where close to being up there again, but with every increase in size, it just hurts and Now no matter what I try ... between the MS meds and my f'd up thyroid - well Here I go again - WTF! I really DON'T want to have to deal with any more, seriously I'm going to snap one of these days. I just want to SCREAM, but what good would it do. It's sad when even my daughter has noticed :( and mentioned it a few times "how fat you're getting"...NICE. Avrianna has also been giving me the guilt trip alot lately that she doesn't have a sibling to "play" with. UGH!!! Really ~ I would just like to crawl in a hole. What a let down and disappointment I'm finding it more and more difficult to like myself lately. It's just one thing after the other. STOP IT ALREADY!
Today we are packing up to head down to Milwaukee for some follow up appts for Danny and then I have my monthly MS treatment. I'm not sure how today is going to go for Danny as once again the allergy season is kicking his butt (and mine now too). I had made many phone calls to doctors yesterday to get some helping Lil Man out. The doctors in CHOW have already been notified so we'll see what they say on how he is doing once we get there. Keep your fingers crossed!
I will post later with updates :)

New Travels

2011-05-27T10:44:00.004-05:00

Our family was able to see so much more of the US, then I ever could have thought we would have, having this RV. It allowed the whole family to travel together along with ALL the equipment that Danny requires. There are so many memories that were made in this RV. I am for ever grateful to have had this so Danny could be apart of our family travels, and go comfortably. With that being said ..... Danny has outgrown the bathroom/shower so....................We welcome our new RIDE ~ to more n more adventures. It's 3 ft longer then our old RV so we'll have more space for Danny's equipment. But it's a BUS so it will take awhile for me to get used to driving it. I should catch on pretty quickly.... I can adapt ~ LOL
It's the same floor plan as our old RV which is GREAT...we LOVED the other one. If it wasn't for not being able to bath the boy we'd still have it.except this one has bunk beds for the kids to sleep in.....who do you think is getting the top? Avrianna is so excited to go on vacation.Now we just have to get it here and I can start the transition of making it OUR home on wheels. Thankfully I have some time to get everything in order before we roll out in it for the 4th of July. That will be a nice dry run of 3 days in it before we leave for our week long trip to St. Louis M.O. Once the RV gets here then we have to make sure the car dolly we have with Danny's Van on it will ride nicely behind this bus. I hope so or we'll have to have use some creative thinking.

Last month a spent a very long, cold, rainy weekend and went searching for a car, to tool around in. When I don't have Danny with me I want to leave the Van so if Danny needed to go anywhere the nurses have the availability to take him out. So I wanted to find a nice but sporty looking vehicle for myself. I can't remember the last time a I had a car to drive. Well after three days of test driving cars and then playing the seesaw game on price. ..... Momma got herself a new ride :)

Avrianna is just ITCHING for school to be done. I can't say I blame her with the "spotty" days of warm weather we've been having. BUT with every really nice day we've had here it has ended in tornado's. UNACCEPTABLE ~ Mother Nature!! I really wonder who pissed her off this year. Things NEED to calm down not just here but all over. My thoughts n prayers are with the families that have been effected by the destruction, injuries, and even deaths with the tornado's the last few weeks. It's just devastating !

Danny is continuing to hold his own but now, once again, has some significant ear drainage. It's nothing really new with him as he gets ear infections ALL the time....even WITH tubes in. Sigh! Danny still requires oxygen at night but during the day he has been stable. We still haven't heard back from CHOW about the Cpap over nite......but that is NOT surprising. Gotta LOVE those pediatric specialists....NOT ~ Their communication skills SUCK!

I am doing VERY well. I do believe the new MS med I am on is doing the trick (knocking on wood). I go back down to Milwaukee for another treatment on Wednesday in coordination with some of Danny's appts to CHOW. It will be nice to have Aleana and Danny along with me :) I went to the dermatologist yesterday for my annual check over and of course he found something "suspicious" on my side. so it was biopsied and I will have the results in 7-10 days. Now I have a dime size hole on my side, sigh. Then I had gotten a wart frozen off my foot. I've been dealing with this thing for years with the same old...."It'll go away on it's own" speech. Well it never did after 10 years so I've had to frozen now 3 times and cauterized off once in the last 1.5 years.....it keeps coming back, grrrrr. I guess I will just have to continue to deal with it as, now with me being on Immune suppressant meds for my MS and warts being a virus, it's going to be VERY difficult to get rid of. I don't know what was so different yesterday BUT this last freeze fest was AWFUL and very PAINFUL so now I'm hobbling around because my foot is so swollen and painful I can't put pressure on it. It's always something I tell ya.

I hope everyone has as wonderful Memorial Day....be safe. Please remember our fallen and current veterans who put their lives on the line to give us the freedom we have today. GOD BLESS AMERICA!!

Better Days at HOME

2011-05-23T10:29:00.004-05:00

Danny has been lounging around at home.........While Avrianna keeps him occupied ~ I LOVE watching these two :) What a great relationship these to have. They both adore each other :)

Life has been pretty hectic around here the last week. The beginning of the week was brutal with Danny rapidly getting sicker n sicker. UGH! Gail had her work cut out for her on Mon and Tues of last week. Danny was HIGH MAINTENANCE with needing to be suctioned constantly, gut issues, and doctors appts. We managed to keep him at home from any hospital admissions, but it was getting pretty close there for a few days. WAY TO GO ALEANA n GAIL!! We are still waiting to hear from CHOW to see if Pulmonary wants to have Danny put on Cpap over night and when he's sick to help keep his lungs open. One of Danny's issues is he's shallow breathing which allows areas of his lungs to get atelectasis or collapsing of his lungs. The ONE thing Danny has going for him is that he does have "healthy" lungs it's his muscle tone that isn't helping to clean the lungs out. Seeing we already bi passed his upper air way issues with the trache now we might have to help him clear the lungs better with the Cpap. It's alil scary as this means a ventilator. SIGH ~ I'm sick to my stomach. I know it's just another step in the forever lasting path of Danny and really I'm ok with it, but it's a VENT, ugh. It's amazing how through the "Danny" process the train of thought changes....all for the good :) But I can remember how I thought NO WAY a vent and then I've met these wonderful children that have vents and maintain and great life style. Now I'm still for no vent IF Danny isn't Danny anymore. God forbid something should happen and his personality and thrive isn't there anymore then I couldn't let a machine keep him here just for my self reasons. As long as I see the fight in him and will FIGHT FOR HIM!!

10.5 more days of school BUT who's counting. YIKES! Avrianna can't wait! Danny is already done with school. With him being so ill I cancelled therapies for the rest of this year for him to recover, but boy do we miss the therapist's. The last few weeks Avrianna has had alot of fun projects to do at school. She just did a learning box about the state of Tennessee and went in front of the class to talk about what she's learned and enjoyed about the state. She was excited she got a state that we drive through when we go down to Florida (We are planning on 3 trips down to FL next school year ~ YAY). Today she has a skit to do about the precipitation stages so this weekend we were making clouds and raindrops to go with her speech while her partner made a sun and lake. I hope they do well. Next week they have an ice cream social at school and then the day before the last day Dan and I volunteered to go on a 3rd grade field trip to the Milwaukee museum. God help us, LOL! I've never been there so I'm excited to go....just not the bus ride to get there. Then the summer break is here!! Avrianna is going to busy with Drama, Girl Scout camp, and having her cousin here for almost a month. We are taking a family vacation to St Louis..camping out at Jellystone Park, going to the Arch, Six Flags Great America, and what ever else trips our trigger :) Danny just behave himself!! We are going without any nurses.

Yesterday Dan started to plant the Osero Organic garden 2011. He got it about half planted before the storms started to roll in. Now to wait patiently to reap the benefits of having our own garden. While Dan planted the garden I moved the lawn, Avrianna went swimming in the pool (YIKES ~ it's not heated yet and COLD) yeap she is NUTS, and Danny supervised with Gails assistance. Somehow I was the only one that got burnt...I mean SCORCHED! I'm going to have to check to see if any of my meds have sun burn effects cuz ...... WOW I'm red. I was only out for around 3 hrs on the lawn mower but it looks as if I was out for 3 days. I hope it tans and it doesn't peel. I have to do my annual check over with my dermatologist on Thursday....I don't think he's going to be impressed with me. Whoops!

More tornados were storming through the area and in other states yesterday. My thoughts in prayers are with the families that were effected with the storms. I can't believe the severity of the storms not only already but just this year alone. I can't remember being in the basement this much....once a year, maybe twice. BUT we've been down there already 3 times and the season has JUST begun. UNREAL!!

Stay Safe

Picture Catch UP

2011-05-15T14:33:00.006-05:00

For those of you that don't follow us on Facebook....here's the picture catch up from our latest hospitalization for you guys. The connectivity at the hospital limits what you can do ...I could post but not post pictures. So here's a recap!

Looks like he had a rough night. We are still in Theda ER waiting for the transport team to pick us up. Protocol is the receiving hospital picks up the patient so we waited at least 2 hours for the ambulance to come. Just enough time for me to go home and pack. The black "bug" in the middle of his chest is his med port. First time it was accessed and it was a success!
Danny's first set of Xrays....the right lung (left side) lower lobe has a significant cloudy spot which takes about half of the lower lobe.
All strapped in and ready for the ride :( I was with and sat in the front seat

Ugh!The ambulance is all decked out ~

Hooked up to the vent.....for 2 days :( .... and yes I got alot of grief for this one ~ Danny having peach fuzz above his lip.....so once we got home ~ I shaved it off. SIGH ~ shaving my 7yr old. Now there is something wrong with that!

Sitting up in the lounge chair....I think he likes it :)

We even got Danny outside for a few minutes. We didn't have HIS chair (when you come in an ambulance the wheelchair doesn't come with) so we improvised with a "regular" one. Where there's a will there's a way!Still sick but still smiling....what's with my Lil Man. He's such a trooper!Chill'n out for the day in the chair with my Lil man....4 days into the "trip", boy it does wonders on a body ~ WOW look at those bags under the eyes. Those darn couch/beds! Poor Danny is so pale here :(
After 6 days down at CHOW he is finally home...still not great, but we're working on it! Avrianna missed Danny so much!Today we've hit some set backs on progress but it's not too far. Danny has been tugging pretty hard to breathe and there are some wheezy sounds in his lungs. More breathing treatments and he is stuck to the oxygen machine!! This morning he wasn't a fan of his g tube feeds so we had to turn them down. Never a dull moment around here! It's me and Danny this afternoon n evening so we are going to do some snuggl'n on the couch and just "relax" (I hope). I'm going to take Avrianna out for some Mommy n Me time tomorrow..... Just her and I for some retail therapy ;)

As you can see I had time to do some blog additions and face lifts. Hope you like them!

PARTY!

2011-05-14T15:29:00.004-05:00

Well Danny's sputum culture crew out 3 different bacterias (sigh) how many are going to party in his trachea. He grew out Pseudomonas and Yeast by Sunday evening and by Thursday a third germ joined into the party called Klebsiella Pneumoniae. So now Danny has three bacteria diagnosis on top of Pneumonia and Tracheitis. Danny got a general IV antibiotic and a big dog IV antibiotic in the ER room at Theda, when we were transferred CHOW he was put on another big IV antibiotic in addition to TOBI ~ an inhaled antibiotic. Thankfully the antibiotics that he was started on worked for all three germ so we didn't have to change it once again :) All of Danny's breathing "treatments" have been doubled too so I think we are getting a good handle on this pneumonia. The xrays had gotten better each day and his oxygen levels have decreased. The bleeding from his trachea is getting better too so I can believe the Tracheitis is getting better also. Things are on the right track! Danny still has a way too go, but at least he is on the up n up. Soooooooo I was able to sweet talk them into letting us go home on Friday morning ~ Woooohoooo! Aleana came down to pick us up as Danny and I were stranded in CHOW, with coming down via ambulance we don't have the luxury to jump in the van n leave whenever we want to. Boy was I glad to see Aleana walk into our room to save us from our fish bowl. Danny is still on TPN but we are slowly working to get him back to his normal feeds.... Slow n steady always wins the race as Dr Kasper always puts it :) So we will be partying here at home now, hopefully for a long time. Now that we are home I have some spring shopping to do for plants and some outdoor furniture, looks like Avrianna and I have some retail therapy to do :)

Teeter TotterIng

2011-05-09T19:27:00.004-05:00

The first attempt at going off the vent was not a pleasant one. For the first 5 minutes it went great and then....... Not so good. Thankfully (if you want to say that) it wasn't really because he couldn't handle it respiratory wise. Let me explain, the RT took the vent off and started pep with his breathing treatment and Danny really liked that :). Then a few minutes later she started Mr.Jiggles once that was over with cough assist was started and then came the seizure -YIKES! About 30 minutes later after two rescue meds and back on the vent Danny calmed down. We all needed a break after that! I'm sure with him being down n out, just off then vent, and getting the once over with "pulmnology toileting" that he was just sent over the edge and was overwhelmed. I was bummed but like I said Danny's the boss and he obviously wanted to be left alone so that is what we did.....until later in the afternoon :) RT was wonderful and stuck in the room with me n Danny until things calmed down. The second attempt at coming off the vent was less traumatic on Danny, in turn on us all :). Danny was switched over from vent to his trache collar while he was sleeping and he did wonderful. Success!!!! Then a lil later RT came back and did the rest of his treatments so he didn't get them all at once like the first time. Since coming off the vent Danny did NOT need to go back on, but the machine was left in the room over nite just incase he needed some help while sleeping, but he didn't need to be put back on it so they removed the machine this afternoon :). Then there was a thought that possibly Danny had gotten sepsis so I was a lil uneasy until the blood n urine cultures came back clean, phew! The preliminary results from the sputum culture grew gram negative bacteria so now we wait to see WHAT the bacteria is in the final results. The hope is that the broad spectrum antibiotic he is already on will be effective in killing the bacteria so we dont have to put him on another antibiotic Yesterday afternoon Danny started to bleed out of his g-tube when it was vented so he is now on a med to help coat the stomach lining, which seemed to have helped slow the bleeding down. So they tried to feed him at a slow rate over nite as he hasn't been fed now since Friday afternoon. The feeds seemed to go well.....and then the retching began :( when we went to vent him he was still bleeding out of the g tube. The vented goo was tested for PH levels and that came back at 6 which shows that his prevacid is working and his tummy contents are not acidic so gastritis/ulcer is a harder sell now. Feeds are on hold until bleeding gets better and if it doesn't improve by tomorrow they will start TPN and I'm going to ask for a scope so we can see what going on in that Lil tummy of his. During his RT session this afternoon Danny started to bleed from his trache, geez... with all the work up they have been doing ie suctioning,tobi nebs, positive pressures, cough assist its no wonder why the trachea is irritated. But with the bleeding from both the trache and the tummy, with already low blood levels still from surgery, there was some concerns so they ran labs. The labs came back so so...his platelets are still very low (which doesn't help with the bleeding)..... well everything came back flagged low EXCEPT his CRP level which is an inflammatory marker. High is 1 and Danny's came back at 17, this is better then the 19 that he had in the ER on Saturday but still not good. Labs will be rerun with a few more tests tomorrow morning and we should have a better game plan with what's going on with that.
Dan and Avrianna came down to visit us yesterday, what a great Mother's Day gift....for me to hang out with both my children. I am so lucky and proud to be a Mom to these two AMAZING kids. I LOVE YOU Avrianna and Danny! Avrianna is doing wonderful with Danny and I gone. She does great when it's just her and Dan .... Even better then when I'm there. I'm glad I don't have to worry about that too when I'm down here. BUT Mr Gunner has been a naughty different story. I think he misses us and has some anxiety issues. Even if it's just us leaving for a few hours he gets into trouble. Of course I'm not sure what happened to him before he was at the pound BUT just being left at a pound has to set some separation anxiety issues. I need to get home and do some serious training guidance lessons for Mr Gunner.
As always I will keep you posted. Thanks for checking on us!

Hospitalized Mother's Day

2011-05-08T08:12:00.003-05:00

Yesterday morning Danny's respiratory status went down hill fast. Friday morning I noticed Danny getting more junky and we chalked it up to possible teething and allergies, but it wasn't alarming. By 1:00 it was like someone turned on a switch for his secretions, it was awful I've never see him so junky before. Danny definitely gave Aleana a workout for Nurse's Day :(. As the nite went on his secretions turned from white, to yellow, then GREEN. Yuck! By morning I knew Danny needed more help then what could do for him at home....aka ventilator :(. He was breathing so fast and hard his poor face was fire engine red and his heart looked as if it was going to come right out of his chest :(. Once we got to the local ER I knew in my gut they weren't going to keep us there on breathing support so......we got a "boxed" limo ride with the special treatment. We rode in the very decorated and "fun" ambulance. It's amazing how many people will stare at the ambulance while driving. The ambulance team was wonderful with my Lil Man, unfortunately Danny didn't like the ride too much but he settled down once we got to CHOW. The diagnosis when we got here from Theda Clark was pneumonia,but the doctor here wasn't so sure (she's a pulmonologist too, lucky for us) so she wanted to see what this mornings X-rays looked like and see if any of the cultures that were done had grown anything. Last nite was VERY LONG....as the med port access had clotted (this was the first time it was accessed since placement and it wasn't in more then 10hrs and a clot already) so new access needed to be established. The with Danny not having a cuffed trach the air was leaking from the vent and it was alarming ALL NITE LONG (let me tell you a vent alarm is NOT subtle, it darn near throws me out of bed). Of course after we fall asleep X-ray is in the room at 4:20am YIKES! The X-ray this morning did infact show NO pneumonia :) so they believe tracheitis or some other infection of the trachea is brewing. We'll see what the cultures grow out but until then they going to hit him with antibiotics, breathing treatments, Mr Jiggles, cough assist around the clock. He isn't tolerating things in his gut so we are moving slowly with his meds and "trying" food, but this morning when we vent him we are getting blood so we'll see what comes of this. As I type this the RT is in here and we are going to try him OFF the vent to see how he does. HE IS THE BOSS so he will let us know- please cross your fingers and say a lil prayer that the vent will stay away. Well I need to run but wanted to let you know Shay going on with us. Happy Mother's Day!!!

Wonderful Accomplishments :)

2011-05-06T08:18:00.007-05:00

Congratulations Whitney on your Confirmation :) We are so Proud of you. Reach for the stars girl...YOU can accomplish anything and everything! We LOVE YOU!Happy Nurses Day ~ To our WONDERFUL Nurses Aleana & Gail! They are our FAMILY :)

Happy Mother's Day ~ My 5 Generation picture! (Taken 5-1-11)

The Whole Crew! I'm very thankful for my family and that I've been able to share so many memories with them. I'm one Lucky Lady to have them in my life for so long :)Danny chatting it up with his Great Great Grandma NaGreen. She is SO FOND of Danny! (Sophia NaGreeen 98)
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Look what I can DO! My Mom NEVER gives up on me, Pushes me to my limits, and gives me opportunities that I was told I couldn't do :) SMILE!

Not only did I give him strawberries that day, but he licked a Dill Pickle potato chip (ewww), and had some applesauce (YUM). Can you say MAJOR taste overload? But he did GREAT with it. Vanilla Ice Cream is one of his favorites :)

Yesterday Danny was back UP in his stander. After a surgery, where in the beginning, I was told Danny would never be able to go back in. Well............................... Take THAT!

He is more reclined then he used to be, but he's UP and tolerating it :) Have I told you how PROUD OF YOU I AM, DANNY!

Danny's post op appts on Tuesday went very well. We don't have to see Ortho now until he is ready for another rod lengthening. They think it will be right around the beginning of Sept. BUT we'll see what his xrays look like. I will bring him in for xrays the end of the summer. If his curve is stable then I will put off the surgery until HE is ready for it. There is NO sense in growing him out if HE isn't ready for it. Danny is growing up so fast on his own, he doesn't need someone else to do it for him :) The ENT had to pull out another blood clot out of his right ear again, but now that it's out his ear should be good. Just another week of ear drops and to watch the ear tubes and make sure he doesn't have an allergy to these ones.

Avrianna is gearing up for the Summer. She can't wait! We have a few things planned this year: a Drama class, going up North for the 4th, having her cousin stay with us for almost a month, going to St Louis to Jellystone Park and doing some fun activities there, and she has a week long Girl Scout camp. She is going to busy....does that surprise you? NOT ~ LOL! Avrianna is doing really well with her glasses that she got about a month ago. I guess she really needed them ...darn kid should have told me sooner she was having problems. I'm glad we got it taken care of now and she is going great. Her braces haven't been bothering her, only when she gets them tightened does she have some discomfort for a few days. I can't believe how much/ fast she is growing up :( This week I did a bunch of cleaning out and the Barbie's went away, the dolls, the small bike too all went away....makes me sad. My Lil girl is becoming a young lady!

I was able to have my first MS treatment in Milwaukee the same day as Danny's Post op appts on Tuesday. I was so nice to have Gail and Danny there with me. Danny of course was the center of attention :) Everything went great! It's refreshing to say I'm doing good and in minimal daily pain. I didn't think I would EVER feel like this again.....EVER! So I'm grateful for the extra time I have :)

Dan is deligently attempting to get his race car ready. Good thing the weather has been darn right CRAPPY this last month and most of the racing days have been canceled. When he's done with it is should be a whole in car under the hood and electronically (not one of Dan's favorite things to do). I'm sure once the weather gets more like spring/summer around here he will be more busy with Fire Calls too but for now he has been busy with his Fire School and Training.

Mr Gunner got himself a "new" home. Yes the kennel is back! I think he has anxiety when we leave and lately he has been eating shoes when we are gone. Grrrrr! So instead of replacing tons of shoes and a possible vet bill, I went out and got a kennel so he will behave and be safe when we are gone. He is SO NOT impressed with it, but as Dan put it Game OVER and you lost. LOL!

I can into contact with an amazing BLOG the other day. This mother is AMAZING and inspirational. She knows exactly how to say how we all feel. I just LOVE reading her blog. I HIGHLY recommend taking a look at her Blog The Bird on the Street. If anything please read this post she wrote ALL I ASK it is a MUST read for my blog friends and family with and without children with Special Needs. Please Read it! I was going to repost it her on my blog for you all to read but I can not. And this post The Problem with Raising a Special Needs Child. Heck I could many more on here just stop in on her blog you won't be disappointed!

Thanks for checking in on us! Please let us know you stopped by as we love to here from you too.

Well HOP to it!

2011-04-25T21:39:00.008-05:00

Happy Easter from The Osero's

All of the baskets n eggs were found in about 30 mintues....guess the Bunny needs to do a better job of hiding them next year :)

My AWESOME kids!Avrianna snapping pictures of us ~What a wonderful holiday! We had Papa n Claudia down to celebrate Easter with us. We went over to my Aunt's house for lunch, this was the first holiday in a few years that we actually went to someone else's house. As always the house was a buzz with stories and jokes, great times....great times!
I know I've been slacking on the recovery updates. No news is good news though. We've been without a nurse,those part timers think they should have a holiday off once in awhile ~ LOL, so I can use that excuse as I've been spending some awesome one on one time with my Lil Man. I've missed being his only one, BUT boy is he high maintenance, LOL. I'm exhausted ~ I can't lay all the blame for that one on Danny .... I also forgot how much fun it is with having NO time restraints so we've been out n about shopping :) With the weather being so great

and Danny doing WONDERFUL, we just kept going. Retail therapy ~ AHHHHHHHhhh!

Danny giving the PICU nurses some grief....miss you guys!

We were out of the hospital less then 48 hours after surgery and not to mention tolerating his feeds already....Oh My that is a record, I think :) It is so nice to see Danny so comfortable, it just goes to show you how much pain/discomfort he was in on a daily basis. We did have alil scare

the first morning we were home with bleeding from his port site, but Dr Kasper came over to the house and checked it all out. For whatever reason Danny started to bleed alil Thursday evening when we got home by the time the morning came around it looked as if it was still bleeding. The fear was the port had a possible malfunction, but thankfully it was only a VERY large clot. Once that was removed and we had a pressure dressing on it for the day, the site stopped bleeding. Dr K was able to draw labs on Danny, when he was here, to see if he was going to require a blood transfusion. I had requested Danny's labs that were taken in the hospital be faxed over so we had a comparison to go by. Seeing the labs there was a concern as his levels were continuing to drop since surgery, I was surprised they let Danny go home with the #'s so low. Danny must have lost alot of blood during surgery.....and afterwards. Once the labs that, Dr K drew, came back we all could take a breath, because, things were stable, they weren't dropping anymore which was a relief to hear. Danny will be on extra iron to supplement for the next 2 months while his body is now working double time to make new blood cells. Other then the bleeding scare Danny has been a ROCK STAR! He hasn't had any pain meds, not even Ibuprofen or Tylenol since he left the hospital. AMAZING how his leg can be cut down the side, all the bruising, with his bone cut off and he is in NO PAIN. I can pick him up and no issues. He can sit in his chair for hours and NO issues. I can change his diaper and NO ISSUES. I can't believe it!

See for yourself it looks like it hurts ~ (taken Easter morning 5 days post op)

Yellow bruising on top and into the groin area

Still swelling n purple bruising on the bottom .....The abductor wedge he has to wear.....NOT impressed with this one too much......see where the horizontal tape is in the middle, around the top to middle of that piece of tape is how far down they removed the bone. Not only did the surgeon cut the head off he cuts down about 1/3 of the femur bone to make sure there will be no rubbing into the hip socket anymore

Here is Danny's Med port siteit looks like a life saver in his chest :)I'm a ROCK STAR! My mom says so......And his poor eyes still look as if he'd been in a fight.... this is what happens with wrong tape, grrrGunner was very excited because as if this morning the cone of shame had been removed and put away. All four of his paws are healed and he isn't licking them anymore. Another long haul with the dew claw removal, but definitely not as drawn out as Bailey was last spring. Bailey's ear is healing nicely too. That was a relief as I was not looking forward to having to go back to the vet to have a drain sewn in. I have met my vet quota for the month, LOL. So I'm hoping they take it easy on me next month.

Thanks for following us through yet again another journey. Your support means the world to us. Take care! and let us know you stopped by :)

Do I know my Lil Man?

2011-04-20T09:17:00.004-05:00

Danny is great with all his procedures yesterday :). Surprisingly he came up to the room awake, I hadn't planned on seeing those baby blues till some time today. He came up to the room about 6:30pm, on a vent, with out his PCA (pain Pump). So things were a lil crazy trying to get him settled and comfy. Thankfully he has nurses that are already "seasoned" by Danny -LOL. They were/are wonderful with him. Once again it helps ease the admission when you have friendly/familiar faces that know most of Danny's Lil curve balls. Unfortunately we weren't as lucky with the RT and NP at admission/during the nite - so the nite wasn't as smooth sailing as I had hoped but all is WONDERFUL this morning. Once I saw Danny's #1 RT walk in the door I knew things were going to go better for Danny's recovery path. Jackie is AWESOME!! We LOVE her as she knows what needs to get done, she follows through, she is patient, and kind and on and on. With Danny she is His ROCK - RT is so important in Danny's world :).
The med port was placed in Danny's chest for the second procedure. The surgeon said that it was a lil trying to thread the catheter under Danny's clavicle but he was successful in getting it in the optimum spot. Go figure Danny presenting a challenge to the "new" doc. As this is the first time Danny had to be seen by a general surgeon. I know I can't believe it myself, but all the other surgeries or procedures have been done by a specialist. They haven't accessed the med port yet as they left the PICC line still in....it's an access he already had so why pull it until we know for sure the port is going to be a good thing for Danny (ie infection or allergy reaction).... just in case we have access as they tried to get an IV in during surgery and they were not able to.
Then the ENT took a look at his ears once again. They still did not look the best especially the right side. There is still granulmona and scar tissue in the right ear. So Danny got his ears deep cleaned and new hypo allergic tubes in both ears. Once the tube was put in the right side a lot of blood started draining out of it, YUCK!
The day nurse and. Ite nurse was herd in the room when he came up from OR so Danny was tag teamed. It was a good thing as he was a Lil high maintenance once on the floor. From bleeding out of the trache, out of the ears, the wound dressing was filling up with blood, getting the PCA on the floor to get him more comfortable they had their hands full. Danny just loves getting all the attention.
The ear drainage has slowed down a lot and he is no longer bleeding out of his trache :). His incision site is still touchy and along with his blood work being a lil off this morning he might need some blood product to boost him up.
The best news is, he is OFF the VENT. Last nite was awful with Danny being on the vent as he fought it all nite causing more grief then good for him. Danny breathes so slow and shallow when sleeping the machines don't recognize it so it will steal Danny's breath away when he really is breathing...then causing the machines to alarm and on and on. We went through weeks n months of this when they wanted Danny to be on the C/Bi-pap. Once Jackie came in and saw he was on a vent she did her thing got him off the vent, in a matter of minutes and he is resting and breathing comfortably :). It's looking better for sleep tonite-wooohooo. I've been up since 2am so it's a Jammie/nap day today...visitors beware -LOL.
I feel a headache coming on.....can't imagine why? So looks like my nap time is near!

Hip surgery is done!

2011-04-19T17:26:00.004-05:00

Danny is doing GREAT! Dr Tassone came up to the room around 5pm (Danny will be in 410) to let me know his part is finished. Everything went well. They took the screws and plate out from the first hip surgery in Dec 08 and then removed the head and part of the femur bone. Once that was removed he flapped up the muscle in the empty space to use as a cushion. Once the doctor was able to see inside he said that the dislocation actually started to wear down the bone which can be painful. Boy it hate it when I'm right - sigh. Now hopefully Danny will be in a lot less pain. Danny has about another hour to go in the OR and then they will bring him right back to the room from the OR. I can't wait to see him
I'll post later

Danny's in surgery

2011-04-19T15:39:00.004-05:00

At 3:20pm Danny went into the OR. The procedures are to run about 3 hrs. First Dr Tassone will be doing the hip, once he is finished a general surgeon will be coming in to place the med port, then the ENT will be going in to look at Danny's ears and possibly put
In new tubes. I will keep you posted
I got a phone call from "A's" school about 11:30 today. She slipped and fell in the lunch room smacking her head on the floor. UGH! She was a trooper and held out in school till about 1:30 and then I got another call she was in the office with a bad headache so Dad to the rescue he went to pick her up and take her home. Sigh - I wish I was there for her but I'm glad Dan was home so he could be there.
Never a dull moment!

Sunny Days

2011-04-13T09:11:00.004-05:00

The grass is turning green, the warm breeze is here, and the SUN is shining down :) Breathe......... ahhhhh, how refreshing. I just love this time of year when LIFE comes back.

Yesterday Dan and I took a drive down to Waukesha to see a new Neurologist at an MS clinic in the Memorial Hospital. AMAZING and breath taking! I feel like a can breathe and relax alil better now. They get it! Dr. Smith is very understanding and knowledgeable. Not that the one I was seeing here in the Valley wasn't good......BUT this one is GREAT! I feel more a peace now that I'm giving it my best shot and whatever happens happens but at least I did everything I could. I'm ok with it......I'm sure I will have shitty days and just want to throw the towel in but I have someone more in my corner that I KNOW will pick me up and be there every step of the way. How many can say that about a Physician? I've worked so hard at giving Danny and Avrianna the BEST physicians, it was time for ME to do the same and it feels as if a load has been lifted. I guess I just thought it's was ok for me to have a doctor, but to have a PHYSICIAN wow what a difference. Do you know what I mean? I am NOT doing this alone. I know I have Dan, my friends, and family but as I say with Danny, if you are not living it you really don't get it. I learned so much in the hour I was there with her then I have ever in the whole 2 yrs since I've been diagnosed with MS. It was refreshing to have Dr. Smith confirm alot of my suspicions about what been going on with me. It was great for her to tell me how beautiful a women I was, how feminine I looked, how she loved my attitude, and how I composed myself well that she wouldn't have known I had MS. I know it sounds weird but it was uplifting for me. Even though some of things weren't easy on the ears to hear about like the progression of this disease, how bad my symptoms are, and what is probably in my future. BUT I know I am giving it my all and I'm ok with whatever I am up against. The only "bad" thing is that I will be traveling down to the Milwaukee area (about 1.5hrs one way) more as I have to be there once a month now for myself and then we have all of Danny's specialists n procedures at the Children's Hospital. I am a pretty good coordinator, if I don't say myself, so I'm pretty sure I will be getting as many appts on one day as I can. It's always a busy day then but then it's done :) It was so nice to drive down with Dan yesterday, with the sun shining .... Thanks for going with me it was a great day hanging out with you :)

Danny is doing ok....he has been hit with the allergy monster (as ALWAYS during this time) so we are been very diligent on meds and treatments. His secretions have increase and become very thick. We don't need him to aspirate on it and get pneumonia as his next surgery is right around the corner on Tuesday to remove the head on his femur and, have a med port placed. I'm telling you never a dull moment here.

Avrianna continues to be a social butterfly so she's normally on the go. She can't wait for summer and asks me over n over again when we are going to get the pool up. Well it's expected to have snow (yes I said it, grrrr) on Saturday. REALLY ~Why do we torture ourselves with this weather here in Wisconsin? Two days ago it was in the 70's....seriously who pissed off Mother Nature. The weather here and far is so off the charts lately.

We are attempting to plan a summer vacation which is exciting but it depends on when Dan has his fire school training and IF we are all healthy. Wish me LUCK with that!

Thanks for stopping by to check on us. As always we LOVE having you follow our journey in this crazy world we call LIFE.

Danny's New Ride

2011-04-06T16:44:00.006-05:00

So what do you think? Danny is going to be one stylin kiddo :)Roll the chair up, lock it in place, and he's off ~ So COOL!APRIL FOOLS! It would be cool though :) Aleana thinks this is in Danny's future, hahahha...I'd like to see her chase him down the road, now that would be priceless!

This is his new Ride..... 2011 Toyota Sienna that we got from Mobility Works in Waukesha,WI equipped with a Vision conversion.

It's a green/grey color ~ really would there be any other color I would choose, other then possibly lime green. LOL

The rear hatch opens, the vehicle kneels, and the ramp fold out all with a touch of one button.
The middle of the floor is cut out, and it's equipped with full size Captain chairs that fold up for the second row seating, and a two person fold up bench for the third row.

Here you can see the seats folded up ~ the sunroof ~ the rubber floor where it is cut out ~ and the TV for the kids. Plus a better view of how the seating is when it is folded up.Installing the EZ lock system in the right place for Danny....just roll him in and the bolt under his chair locks into the base and whala he's in. We have a lap belt for him too, it's not needed for this system but I feel much safer with it on :)Danny trying out the placement of the EZ lock system
View of the passenger second row folded upWe are enjoying the new van and all that is does.....We're so spoiled :)

No more BIG Green Bus for us......this was a wonderful change to our suite our family !

Here We GO again

2011-04-05T19:19:00.005-05:00

The talk of the 4th floor......Lil Man and his blanket. It was a HIT!Danny getting and pep talk from Dad about behaving himself ~ right before Dad had to go back homeHe grew once again! Boy he's growing up WAY TO FAST The reaction I got after I told him ... he gets to go home :) Priceless!Danny's new War wounds.....my poor Lil ManWe hit a record ... shortest stay after surgery. Danny was discharged on Saturday afternoon a whole whopping 24 hrs after surgery. I can't believe it myself! Our hold up of all things was once again getting the TPN on order and delivered to our house. They had to call in the pharmacist to make it for Danny and it was too be delivered to the house around 3:30-4:30 but it didn't arrive till 8:30pm, ugh. I was so tired I decided to wait to hook him up in the morning. We were all so happy to be home and sleeping in our own beds. Until next time couch/bed.....you will be missed, NOT! After giving report to Aleana in the morning she did her assessment and much to my surprise she stated "He had bowel sounds". Music to my ears...weird, when did bowel sounds become the highlight of my day? Needless to say we gave formula a try.....Danny ROCKS ~ he tolerated his formula so NO TPN is needed this time around. WoooooWHooooo!

The injection in his hip is working to relieve his pain so the Dr's are confident that it is indeed his hip giving him all the grief. I totally understand the reasoning of the Dr's wanting to confirm the unknown for before such a big surgery, but I was totally confident of where/what the source of Danny's pain was and I just wanted to get it taken care of during the last stay and then he'd be done. Now with that being said.................next surgery is scheduled for April 19th at noon. Once again there will be a few things getting done while he is under anesthetic.

The orthopedic surgeon will be doing a Girdlestone procedure....which will be HUGE not only as a procedure but for Danny. The Dr will be removing the head off his femur so Danny will no longer have a dislocated hip, it will then be called a "hanging hip". I was really torn on what to do with Danny's hip and the discomfort he was having daily. But through lots of soul searching, research, and opinions of others I feel this is the best for Danny. After already dealing with hip surgery that failed and multiple attempts to relieve Danny's discomfort this new procedure will definitely take care of his hip pain forever. BUT with a cost...his bone will be cut off and he will never be able to weight bear. I have come to grips that Danny will never walk and he can't or doesn't have the ability to stand so I need to make him comfortable and give him the best quality of life I can.

The ENT will be popping in to recheck Danny's ears and make sure they are healing nicely and deep clean them again if they need to be.

Then a General Surgeon will be coming in to place a med port in Danny's chest. I can't believe I've gone through something before Danny did. With the limit sites available via PICC having a med port in should be an easier route to go. Now we don't have to bring Danny in before each procedure for a PICC line in hopes the find an access and no more multiple picks to get a blood draw.

So stay tuned and I will keep you posted with our hectic lifestyle. Thanks for stopping by to check on us!

Lengthening

2011-04-01T16:12:00.004-05:00

Danny and I went to go to pick up the new van before he was to have his PICC line placed yesterday. Once again I get lost driving in unfamiliar territory, geeez. The new van needed to have the ez lock system put in place and that couldn't get done without Danny and his chair there to make sure it was put in the proper place. They needed some extra time to get everything in order, so I went to get Danny's PICC line in first and then I planned on coming back to pick up the van once Danny was admitted and things settled down. Once again....yeap you guessed it, I got lost trying to get to the hospital, grrrrrrrr. Thankfully went I called my friend Shandra she answered her phone, stayed on the line with me and got me to the hospital .... I love Shandra, Thank You so VERY much. I got to the hospital just in time for Danny's PICC line. He was a trooper! No sedation was required - So a BIG balloon was needed for his bravery :) the PICC was to be placed in his right arm, but unfortunately there were no usable veins for a PICC anymore on the right .... They were able to get one in his left arm, but I was told there were slim pickens on the left too. The woman in IR asked if I was ever asked to have a med port put in on Danny. I just had to chuckle as I was trying to get one done but ...... It didn't happen :(. Once Danny was done down in IR we went right up to the floor and they were ready for us :). Danny is in room 412 in ICU. We got him all settled in and then was off to go get e new van, but this time I was smart and brought Shandra with me.....I didn't get lost :). Bonus after we picked up the van, we got something to eat at Texas Road House, YUM! We had a nurse last night that is familiar with Danny which makes it so much easier and less stressful, now if they can just get those chair/beds more comfortable and we are in business. Needless to say I didn't sleep very well, but don't worry the cold showed (due to no hot water) woke my ass right up. Amazingly I was done getting ready before the doctors started to funnel in:) mind you I am very slow to go - lol. The PICC line was no behaving last night and clogged, nothing a lil TPA could handle - phew. Now I need the PICC to work until the port is in.....my poor Lil man has my crummy veins, sorry sweetie. Danny was wheeled down first thing this morning (it's so nice being the first case ... No delays). ENT had there work to do on Danny first - trachea scope and check ears. The scope was wonderful, his trachea looks AWESOME and no changes need to be done at this time. The ears on the other hand......left one was ok, it just needed some deep cleaning. But the right was "pissed off"...leave it to my Lil Man to develop an allergy yo the tube in his ear. UGH! The tube had to come out as there was granualnomia, puss, inflammation, and it was bleeding. Oh my poor Lil guy, that had to hurt like hell. Ear drops and pain meds for that. Then Ortho stepped in to do their part, first the rod lengthening. Danny grew 1" on one side and a 1.5" on the other to compensate for the curve. They flipped him over back onto his back and did the hip injection. All procedures went well without a hitch :). BUT in true Danny form his wake up time from anesthesia was slow to go. He required RT to breathe for him for 20 minutes after he was brought to his room and I finally saw alil peek from the crack of his eye lids a whopping 4.5 hrs after he came up to his room. Do NOT disturb was the only thing going on in Danny's mind. His incisions look great :). His right ear still bleeding but it isn't dripping out of his ear anymore so it must be slowing down, my poor bug that alone has got to hurt. Danny traditionally has GI shut down after anesthetic and this time is mo different ... No bowel sounds :(. At least they know this and TPN is already running. The plan is ..... I'm not sure. They are looking to see the schedules of a general surgeon to place the med port and the schedule of ortho to see when they are available. I already can have walking papers to go home tomorrow, but if they can coordinate ( which is highly unlikely, but you never know ) a time first part of next week they would like us to stay. Like I have nothing better to do with my time, right? So we will see, but I can almost bet we will be going home on TPN in our new van tomorrow :). I will keep you posted!