Spring.......Break?

We had a wonderful Spring Break down in Florida. There was some stressers here in there, but we didn't let that deter our vacation. Luckily we have great nurses that were down there with us.

Aleana drove down with us in the RV and flew home halfway through our vacation. Her trip home did NOT go very smoothly as she left Florida with clear skies and sun BUT when she got into Chicago all the flights home to Appleton were cancelled due to a Blizzard (this is spring break, right?) Luckily she got on a flight into Green Bay later in the evening....we still don't know how she made it home as the weather was awful from what I heard. The area had lightening n thunderstorms, rain, sleet and then 11" of wet heavy snow. Prayers were answered that night. Are we there yet?
Chill'n out in the RV with my Lil ManMade it to the Florida State Line with awesome time.....only 5.5 hrs till we got to the condo. Total was 29 hrs but really only 26 hrs of drive time. NOT BAD!

Happy St Patrick's Day ~ Happy 1st Birthday to Gunner :)
Hangin out!Ah Palm trees, sun and Summer clothes....LIFE IS GOOD :)Avrianna has mastered her Rip Stick....I swear she is going to break a body part one of these days on this.Danny, where is the rest of Aleana? Did you know that you are darn near as tall as her. Always LOVING "Aqua therapy"Boy am I going to be in trouble when she gets older.....
Had to experience it all? Where do they grow these massive Potatoes? They are SO Yummy!
They call me Stevie Wonder ~ LOLPlease click HERE to watch "The After Burn" ~ after each and every startle "episode" he smiles and laughs out loud. It's so cute....a positive (yes that is my warped way of thinking) of seeing him freaking out multiple times a day. And the SMILE, :)

Gail flew in to be with us for the second half of the trip and then she rodeback home with us in the RV ~
They may look innocent ..... BUT we know BETTER ~ Love you guys! There was a night that both nurses were down so we HAD to go out to dinner all together for what else other then .....SEAFOOD!Love that SMILE!
OH no Dear.....It's no fun here in Florida ..... I'm working SO HARD ~ LOL :)
The Shrimp Shack!
Our FAVORITE waitress ~ Jeanie She ALWAYS knows Danny and what we want to order. No matter how long the gap is between our visits.

Shrimply Delicious.........
Danny's Mobile ICU room :)
You missing someone Gail ???

Work it Girl.....LOL
My KIDS :)We got to watch them make Orange Juice. Boy was it GOOD :) YUM!
Let's go to the Pool ~Soaking up the rays on our last day at the pool

Can you believe it...... Dan reading a whole book and here I caught him NAPPING. Loving those Lazy days!It's all good :)
I did get some color in Florida ~ YAY!
Leave it to my kids having medical issues on vacation ......we think Avrianna got a staph infection, some HOW some WHERE. We had to run to the pharmacy an hour before we were to leave to back WI to get antibiotics.
Then her nail fell off .... So now we are going to take Avrianna to see Dr. Kasper tomorrow afternoon to see if we can get a culture off it. UGH ~ always exciting

On our way home.... bring out the sweatshirts and long pants. So SAD :(Oh Lord help us..... it's BeeGee Time :)
Which one is it?
Could it be both?
And this is what we drove home too? What's wrong with us!!!!
Back to reality! I can't believe it is Spring here in Wisconsin with all this snow, more to come, and the very cold temps already....Global Warming ~ I think NOT!

We had a wonderful time soaking up the sun. Plus the hardest decisions down in Florida were where are going out to eat and where we should shop ~LOL. I did my best at NOT having to make anything at home to eat when in Florida so we ate like Royalty. I now have to go on a HUGE diet n exercise program to get the extra pounds off. I am going through SEAFOOD withdrawal here. While we were out shopping on Wednesday Lil Man decided to have a full blown seizure in the store, freaking out some of the staff. It's all good.....I came with nurses :) Gail was very calm and handled it well, even better then I did, phew. The next morning Danny had started to bleed out of his ear, YIKES! I don't know what I would do without Danny's "girls", I've said it before and I'll say it again they are not only our nurses n friends we've now adopted them as our family . They are so important in our lives and it means so much to us to have them in our lives. WE LOVE YOU ALEANA N GAIL!! Thanks for coming with us and I hope you guys will want to join us to more of our trips.

Thursday the 31st Danny and I are going down to Milwaukee. First to pick up our new van....YAY! Then we are headed to CHOW to have a PICC line placed and to be admitted. First thing Friday morning Danny will be having surgery for ......

1. ENT will be scoping his trachea to make sure all looks good down there and to see if his trache size needs to be change. Plus with his ear issues lately I will have him look at his ears and deep clean them as long as Danny will be already under anesthetic

2. Ortho will be doing the first rod lengthening on his rods in his back and then I believe an injection (of steroids and a numbing med) into his right hip to see if there is any relief from the pain Danny has been having. There has been some discussions on what should be done with his hip, as I would like to have something different done then the injection. I feel that there is nothing to lose with doing the surgery to remove the head of his femur (called the Girdlestone procedure). As I feel confident that Danny is having significant pain coming from his hip, but the Ortho surgeon wants to know for sure this is the issue. I know Danny's hip is dislocated (xrays proven), I know Danny has calcium deposits (xrays n Ct scan proven) from inflammation which will cause arthritis. I know Danny's hip once repositioned relieves his discomfort so I feel that even if it's not the ONLY source of Danny's pain, it will remove one of the factors out. I feel this surgery is enevitable for Danny so the sooner the better plus to be able to add it to a surgery he is already having, then great. The longer we wait the longer, I feel, his recovery is going to be. As unfortunately we can see significant regression with Danny from surgery to surgery year after year. So needless to say I'm disappointed that my point isn't really being heard....but that of a surgeon that only sees Danny for 10 minutes twice a year. Yeap, he knows what is going on with Danny. So I guess we'll go through the motions to make them happy that what I'm saying is in fact true and then.....they'll do what I requested from the beginning. I'm just upset about it all but there's nothing I can do...I can't make a them do surgery they don't want to do. My thoughts are they are gun shy as the last three procedures they have done have failed Danny :( One positive is I won't have to stay long ...my hope is to be out Saturday afternoon. My next posts should be on the surgery progress.

Yesterday I got my MS magazine in the mail and happened upon an article about a MS clinic right here in WI at Memorial Hospital in Waukesha. So I got on the horn and had a referral called in from my primary to this MS clinic and much to my amazement I have an appt with the head of the department on the 12th .... OF THIS MONTH. I'm very excited to talk with her, and see if she has any words of wisdom for me. I'm hoping that she'll have some ideas for me to help control my MS. Unfortunately I just see my abilities spinning out of control at a very quick pace. I'm scared to realize that I may feel this way or worse the rest of my life. I'm too young to feel this way EVERY day and I don't have the lifestyle for this crap. I'm going to give this MS a run for it's money! I'm trying to stay positive and optimistic about it all. I can't wait to post about my visit with her.

Dan is suppose to start his drag racing season in April, but if the snow and cold doesn't let up, the racing will not begin :( No worries Dan continues to stay busy and he still finds new things to add to his plate. He is now a volunteer Fire Fighter for the Town of Neenah.....I know, I know but the way I see it....it keeps him out of the house and out of my hair, LOL.

Stay tuned and I'll keep you all posted with our journey's .... as always :) Thanks for stopping by to check in on us. We LOVE to hear from you too, so post a comment and tell us what's been going on with you guys!

New Proposals

"Mom can you do me a favor?"

What?

"Can you make sure I get my homework done right away after school and then can I go to bed?"

What ~ Why?

"Things go faster when I'm sleeping and we'll be leaving for Florida sooner if I'm sleeping"

Got to LOVE the way they think!

We'll we're going to attempt to go to Florida for a family vacation once again. I can't wait to get away from the snow! We should have great weather down there and tons of sun. Give me that Vitamin D!! I'm hoping for a wonderful relaxing time, with alot of nothing to do. We've been pretty busy around here so it will be a nice break for us. PLUS it'll be a nice break before Danny's next surgery at the end of the month.

I had my second treatment of Tysarbi on Thursday. It was pretty rocky as to if I would even be able to get the infusion because I was taking steroids due to the severe headache/relapse earlier in the week. It was finally approved that yes I could have the treatment. PHEW! Leave it to me to have a reaction after the medicine was finished....my face, neck and chest became very flushed. Now they would like me to take benadryl before I go, just to be on the safe side. I am still on a mission to find a newer, better way to keep my MS at bay...as I still have alot of symptoms/relapses. I have been very weak and fatigued with lots of aches that have made it pretty difficult for me to walk. I got "the talk" once again about how I should be using a cane or walker. But I have a secret, I push Danny's chair or push a cart around and no one is the wiser that I need something to help me walk. Having a handicap license for Danny and for me is a bonus! And you got to LOVE the newest symptom I'm having which is what I call the Parkinson shake ~ it's awful! I had a bunch of labs done today after my Neurology appt so once they are in we are going to decided if I should start a different med or increase the meds I'm already on, UGH! I'm definitely not going to start a new med right before I go on Vacation so it will have to wait till we come back if that is the case.

We bought a new mini van to replace our full size Ford van. This too will be converted so that Danny can get in, but with more ease. This one will have a ramp that will fold out from the rear hatch instead of a lift that lowers out of the side doors. I can't wait! Best of all....wait for it....for those of you that know Dan.....wait for it......it's NOT a Ford, it's a Toyota.....I know, right? I bet he gets hives not being in a Ford, but for me there's no issue. Of course in true Osero style the van was "lost" for about 4 days. REALLY, how can they lose a van? But at the same time it doesn't surprise me. The vehicle was being delivered from Michigan to Milwaukee on a transit but it didn't make it's destination on Thursday like it was suppose to and no one could find it. Well it finally made it to Milwaukee, today, but unfortunately it's not in enough time for us to pick it up and have everything ready before we leave so I we'll pick it up when we come back from Florida.

I send a heart felt very educated email to Danny's orthopedic surgeon about his up coming rod lengthening surgery on April 1st. It's become apparent to us that Danny is having significant pain in his right hip again which is making normal daily cares very difficult and tear filled, for all. So I proposed that instead of doing the steroid injection in that hip (I feel a band -aid) I believe the inevitable surgery (a Girdlestone procedure ~ cutting the head of the femur) is the better route to go. The only thing I can TRULY give Danny to make a "difference" in his life.... is comfort. I'm willing to invest the extra time and steps to make the quality of his life more comfortable for longer. I'm still waiting to here the Dr opinions and see if there is time available that can be added to his rod lengthening surgery. Once again the waiting game, sigh.

Please keep Danny's girlfriend Kylee and her family in your thoughts n prayers. As they are preparing to let their Lil Angel go. They are going through something that no family should have to ever endure. My heart breaks for them. What a wonderful family and I'm so glad our paths have crossed to make a great friendship. We LOVE you KYLEE!

Expander n Braces

It's all about the teeth on Monday... our dog Bailey went in to the vet for surgery to have a rear tooth that cracked extracted. She did wonderful during the procedure and was able to come Monday afternoon.

Avrianna went in to the orthodontist to have her expander with tongue thrust bracket removed. And here it is...WOW. That was all in her mouth. She was a trooper the to have that in her mouth for 6 months. She did alot better then I would have :)
Look nothing in there :)

All SMILESAnd on to phase 2 ~ Braces! Almost all on. She will have to have these on for approx a year.
All done ~ of course it's new and she's excited about it. Yeap weird!
After about 1.5 hours I got a call from school. Her front teeth braces popped right off her teeth. UGH....so off to school to pick her up and bring her back to the ortho. They put in a smaller gage wire and reglued the braces back on. And she's all good again :)

I'm once again not doing so hot. I woke up at 12:15am from a SEVERE headache. I finally feel asleep after MANY meds and alot of contemplating about going into the ER. But with being on this new MS med I didn't know what I could or couldn't so I really wanted to wait till I could talk to my Neurologist to make sure I don't compromise my new treatment. Well I'm back on steroids and ALOT of pain meds and muscle relaxers. Come on life cut me some SLACK!!!

Danny had his pre-op today here with his pediatrician. Everything looks great and it's still a GO. I really didn't think there was going to be an issue as this has been his BEST winter season EVER. The hip is still causing him ALOT of discomfort which is just breaking my heart and is a major stresser!

Keeping you in the loop :)

Slow and Steady

Not too much to report over here. I guess that is a good thing :) February was here and gone, wow time flies.

Avrianna is finished with swim for the season. She has decided to not swim in the spring/summer season BUT she will start up again in the Fall/Winter which goes from September to February. There is alil break between now and when spring/summer starts so maybe she'll change her mind....we'll see. She finished doing VERY WELL. Her ribbon board received more ribbons from the last meet she had in Fond du lac. What a wonderful facility that was to swim at. Unfortunately another BIG snow storm hit as we were getting there on Sunday so once we were ready to leave the roads were AWFUL. Fond du lac had already but a towing ban on so IF we were in need of help we'd have to wait it out till after the storm had passed. Thankfully we made it home safe with no issues. Slow n steady :) Avrianna is pretty excited to have some time off. Swim is a BIG commitment with practice 3 times a week and then a meet that takes up one weekend a month so for her to be able to just veg around after school is a blessing for her. Right now Avrianna just has piano on Monday nites so the rest of the week she is "bored" ~ LOL, never a dull moment with that girl. She needs to be busy ALL the time. This weekend I am going along with her Girl Scout troop for a sleepover at the Children's Museum...welcome a late nite with a stiff back in the morning :) Avrianna is EXTRA excited as next Monday her expander is coming off. 6 months of having all that hardware in her mouth. I have to say I'm very proud of her as she really didn't complain about it at all. I know I wouldn't have been such a good trooper about it. I'm not sure how it all works with getting it off and going to the phase 2 which is braces, if the braces will be going on right away on Monday too or not. Of course this too will be something new so she can't wait to get them on....we'll see how excited she is a couple days after the braces are on, heehee. Avrianna is doing AWESOME in school...I'm so proud of her. She placed higher then the ADVANCED bracket for her Math and Reading state testing. WOW, that was a surprise to me for the reading as I had just got a letter in the mail stating she was struggling alil with it.....I think Avrianna does better with the written tests then she does with the oral ones. Yay! And Math well she is a WIZ I don't need to worry about that subject with her. Maybe she needs to be in a class that needs to be challenge her more, I mean higher then Advanced ~ WONDERFUL ~ Way to GO Avrianna! Unfortunately she had to deal with some school bus bullying but for the most part she handled VERY WELL and did what she needed to do and got help with it. She's a tough cookie but boy can kids be mean....it's SO SAD that kids have to deal with this at such an early age. I just breaks my heart :( But I'm glad she was smart enough to get help :) And cudos to the school for stepping up and helping her/us to defuse the problems.

Danny continues to be healthy :), I hope I don't screw myself by saying that. Unfortunately he still has ALOT of discomfort in his lower back hip area. I'm hoping that with growing the rods out and having the steriod injection in his hip area it will help with relieving his pain. It's just awful knowing that when I pick him up, change his diaper, or just reposition him that he'll cry. Pulling at the heart strings here :( We are going to have his pre-op done here by his Pediatrician so we don't have to run back down to Milwaukee. We might have to go down the afternoon before surgery to have his PICC line placed. I'm hoping if we do then they can admit him right afterwards so we are in house for the surgery first thing the next morning. It will be less stressful and less traveling for us if it can be done this way. I'm waiting for the Ortho dept to call us back with the details of what's all going to happen. We'll be talking with Danny's Neurologist this month about his "non-seizures" episodes and what is the best way to treat it.

I will be going in to see my Osteopathic doctor this week not only to crack every bone in my back in neck, LOL....but to have injections of steroids and numbing meds in the base of my head. The hope is to get rid of this headache!!! I'm alil nervous about needles going in my head/neck but I'm to the point that I will try anything. Next week I go in for my second dose of the new MS med Tysarbi. I'm so glad I had no reactions to the first treatment, but I still feel uneasy as I know it can have serious side effects down the road :( I have a follow up with my Neurologist in the middle of this month my stuff.

We have planned to go down to Florida for spring break. I am really looking forward to sun, pool time, and getting together with my friends down there. I really miss not being able to go down there for months at a time anymore. This trip is going to be alittle different for us....I'm so excited that Danny's nurses are coming down too. One of them is driving down with us and then flying home.....while the other will fly in and then drive home with us. It's going to be GREAT time!

Well so much for not having too much to report, LOL. Thanks for checking in on us! As always I'll keep you posted :)

Eye Candi

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One of my girlfriends is making these wonderful pieces of jewelry that can be custom made with a picture, symbol, the sky is the limit. Click HERE and that will get you to her link and you can see what she can do. It's amazing!

Follow up Appt

On Tuesday Danny, Gail, and myself went down to CHOW for a "Fun" filled day of appointments. Ok there is alil sarcasm here, but we did try to make is a "fun" as possible.

Our first appt was to have Danny's spine and hip xrayed so they have a guide line if/when they do the rod lengthening. Once we got up to xray in the ortho dept of course Danny was NOT on the schedule, grrrr. I had multiple email conversations with the dept reassuring me that Danny would be on the schedule so we were to just walk in when we got there. So they had to track down the Dr to be able to put the order in the system. Grrrrr! Luckily we only waited an add'l 20 minutes, the xrays went smoothly, and we weren't late for his second appt :) Yesterday they got back to me with the xray results and the right hip is dislocated, the left looks fine and his spine has started to curve once again, so he is indeed ready for the rod lengthening. It is scheduled for April 1st (no joke). It's suppose to be a day surgery, but we all know Danny (and even the doctors are starting to figure that out) so he is going to be admitted afterwards. I'm not sure how long we'll be there but I'm hoping to be home no later then Monday. Now that might be a stretch but maybe Danny will surprise us for once and this will be a breeze.

Danny's second appt was the trache/vent clinic. This one is a long one, BUT they all come to you, this is SO NICE. We saw a dietitian, respiratory nurse, trache nurse, ENT, and the Pulmonary Dr. There was a few hiccups in the paperwork there, but other then that is was a good visit. We got the "you guys are doing a great job, he looks wonderful, keep doing what you are doing" :) With the exception of the ENT having us come down to his clinic to have Danny's right ear cultured. Danny continues to have goo in the right ear (ALWAYS) so the ENT sucked out what he could with his lil machine and sent it off to be tested. We'll see what Danny is still growing in his ear. Poor Lil Man always has ear issues.

Then from there we had about a 45min lunch break. PHEW! The hospital was starting to smell like food and my stomach was chatting :) Unfortunately this stop to CHOW didn't give us enough time to take a lunch at The Cheesecake Factory, but we did find some cheesecake for dessert, not the same .... but it was good and got rid of our sweet tooth :)

After lunch it was off to Radiology to have his Kidney and bladder looked at with an ultrasound before his appt with the Urologist. The images still show a stone/pocket of goo in his left kidney. BUT it hasn't grown or changed so we are just going to watch it......and see you in a year. Whooo hooo!

Danny's last appt was to have an EKG done. With him being on a new Med for his dysautonomia the doctors wanted to make sure his heart was working properly as Danny has been very sleepy, has a low heart rate n Blood pressure, and has been very cold to the touch. I guess they wanted to make sure it was just the med reactions and not a heart issue too. The EKG has come back normal :) So now, sit and wait to see if his body will process the new med better. We've had to decrease the dosage once already.....which I do see his blue eyes more in doing that, BUT in turn he is having more "eposides". Sigh! Can't anything go easy?!?

By this time Gail and I are just loopy and ready to call it a day. Even though it ran smoothly our brains were fried...it was a LONG day.

We did go up and visit our Friend Karen. Please keep her daughter Kylee in your thoughts n prayers as she is fighting for her life. Everyday is a challenge for her and we can only hope n pray that things start to turn around so they can go home and be with their family, happy n healthy. Before we left we HAD to stop over in the cafe' to get Sundaes ..... yes ~ we HAD too, LOL.

Last night I had a Wildtree party here at the house. It's always a good time getting together with friends.....bonus there was drinks and food involved! I really love the Wildtree product, not only is is easy and tastes great, it's also healthier. I'm all for that :) If you are interested....

Go to this link.....Wildtree

Or you can contact my Sales Rep

Meghan Huss
Wildtree Representative
www.wildtree.com
920-687-9428
meghanjh@att.net

Striving Ahead

Is the cup half full or is it half empty? Neither are really wrong.....So I chose to teeter between both of these options. But it will NOT be empty!!

Obviously you can tell my "attitude" has changed. Not that my issues have gone away, just that I have had the SHOCK and the feeling of being overwhelmed subside. I always have alot on my plate, that's just how we roll. I have somewhat organized and processed everything in my head so now I can relax....somewhat as I know all too well how fast life can turn you upside down, in a blink of an eye.

With that being said there are many of Danny's lil friends sick in the hospital and a couple of them are fighting for their lives. I ask you keep them in your thoughts and prayers. Life can be so unfair. It's at times like this, when reality is right in your face, that you feel as if you hate this life. These innocent, precious, beautiful, strong kids have to fight so hard. . . . and then one day they may be gone. I just breaks my heart!

Danny remains Healthy (knock on wood). I might regret saying this/typing this, as Danny LOVES to throw things at me. BUT this is the BEST winter he's ever had! I believe it's because of the GREAT nursing , not only just the care he gets, but because I don't take him out everywhere all the time anymore. Danny used to be glued to my hip where ever I would go, he would go...and just because he was in wheelchair I didn't let that stop me from going anywhere and everywhere. We did start him on a new med for his Dysautonomia which unfortunately has snowed him so he's been mostly asleep then away the last few days. I am hoping in a week are so his body will have adjusted to the dosage and he'll be more awake. As it's so sad not to see those beautiful blue eyes.

OMG the Packers WON Super Bowl 45. What a nail bitter at the end, but they pulled though.

Danny getting ready for the BIG day.Ready!Well he needed a nap as the excitement was just overwhelming :)

Let's get ready to RUMBLE!WOW ~ how awesome!
I took Danny along with Avrianna's Girl Scout Field trip to one of the local Dentist offices. They all had a blast! What a great time I had just watching them.

Avrianna DDS, Heeheee

I had my first treatment of Tysarbi yesterday. It would be lie if I said I wasn't nervous. But everything went well. I had no issues with the port or reactions to the med. Now to sit and wait to see if it's going to work for me. This could be the start of a new beginning or the start of another end. Half full or half empty? Time will tell! This is what the IV access looks like when connected to my port. Looks like a bug, heehee

I am going to be taking Avrianna to an ALL STAR swim meet for kids 8 & under on Sunday. I can't wait, it should be a "fun" meet. I will let you know how she did. Last nite I got back on the "cool" mom list as I took her to the School Skate Nite at the local roller rink. WOW ~ she really hasn't been on skates a lot but she got that mastered and even managed to win at the skate Limbo.It has been brutally cold here. Today is the coldest day I believe at -24 with the wind chill. Seriously? What the heck am I doing here.......brrrrrrrrrrrrr. I am burning wood in the fireplace like a mad women. Dan then says well then you can't complain when I have to spend more time up north cutting more trees. LOL ~ I LOVE the wood burning fire place.....so cozy :)

Thanks again for stopping by to check on us.