Wonderful Accomplishments :)

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.

Sunny Days

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.

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!