Monday, April 28, 2014

Easter Catch Up

It took Avrianna alil over an hour to find everything.  Frustration was starting to set in when she realized finding them was going to be harder then she thought.  LOL ~ EB did a good job hiding them this year.
 Thankfully Danny was a good boy.....Easter is his holiday to be ill, just about every Easter of his life he's been sick and/or in the hospital.  The day before Easter was alil rough for him, of course cuz I was his nurse for the day, but by that afternoon things seem to have calmed down.  I wonder if he caught a bug that had been going around, seeing his nurse on Saturday AND the one on Sunday were sick.
 For dinner we went over to My Aunt Bonnie's.  Seeing Danny made his presence at this family get together I had to grab a few pics, LOL ~ you all know me :)
Danny with his Grt Grandma Bev (nanny's mom) and Nanny aka my mom
 The Fam!!
 Nanny with her Grandbabies and Great Grandbabe, Ethan
 Danny with Grt Granpa Jim
 Ok ~ now isn't he the CUTEST bunny EVER!!  Man I LOVE that smile :)
 Really mom? LOL

The weather is definitely looking alot more like Spring around here.  This week it's suppose to rain like crazy, but at least it's not snow.  Our retention ponds are plum FULL already so I'm not sure where all this rain is going to go.
Woody the woodpecker is being a thorn in my backside you can see he'd rather pound on my cedar beams then the thousands of trees that surround our house. I counted 12 holes already ~ Grrrrrrrrrr!!!!!!  Looks like I'm going to have to get creative as the darn things are protected.
 Seeing the warmer weather has been around ..... looky what has come out of storage.  Can't wait till I can cruise with the top down, but just seeing it out bring me much joy :)
 The pool guys are coming to "open" the pool this week.  It will be too cold to swim for awhile, but it will be ready for when we are ready to go swimming.  I hope this year will be a better pool year then we had last year.  Maybe I'll learn something new and be able to stay head of the green, lol.  The first 2 years were awesome, I hardly had to do anything to the pool but the last 2 years were the complete opposite and it gave me a run for my money.  Here's to a wonderful pool year!!

A couple of weeks ago Avrianna, myself, and Ms Gail went to see Theresa Caputo's show "The Experience" when she  was in Green Bay.  It was a great show, for those of you that don't know her, she is "The Long Island Medium"...she talks to the dead.  Even though we didn't get read personally I had related to a couple of the readings she did and she really makes you think.  We just love watching her show on tv so being able to see her personality and watch her do readings live, it was wonderful.
It was a FULL house by the time the show started, she really has a following.  Love the chandelier hanging.....and her shoes, they were the most sparkly shoes I've ever seen.  True Theresa style!!
 Our view of the stage.  I hope she comes to the area I know I'll be there :)

 Check out whose the rock star that got out of the NICU already!  Mr Ethan is nothing short of amazing, as the Dr's thought he'd be there till his Due date which isn't till May 12.  What a lil peanut he is......weighing in about 5lbs now.
Love getting my baby fixes!!!
 Danny is a great pillow....look Ethan doesn't even fill up Danny's lap :)
 Avrianna is in all her glory!  She can't wait to start babysitting

Danny had been blessed with ANOTHER UTI ~  This is getting really old!! He never used to get them and now it seems as if he has one at least once a month.  Even with cathing him through the day and putting a foley in overnite.  Poor bug, he just needs to catch a break.
Adding insult to injury, Danny has now developed an allergy to the "cillin" family of antibiotics.  Sigh This is what happened!  Benadryl on board please!!!!!!!!!  

 Thankfully it didn't last long and the "rash" was the only thing we had to deal with, but now things are going to be alil more complicated to treat any infections seeing he can only use the BIG DOG antibiotics which those seem to just screw with his gut :(

Sadly last Friday was Ms Krista's last day with us.  She is moving back up north.  We will miss her dearly.  The end of the summer her baby boy is due so we made her promise to come down and visit with him this fall :)  So it's see you later, never Good Bye!!
 We are now looking to fill her hours for Friday's.  What's with Friday RN's? They seem to leave us.  So until it's filled, Danny is stuck with ME.

Dan had to show Danny how to use the power drill this weekend :)
 I'm ready........Where do you need a hole?
We put up Danny's artwork and made it as a border around his room.  I'm telling ya, he's got the "eye" for art.  It looks wonderful in his room.  A big thanks to Ms Aleana for helping with making Danny's print art.  They are all done from his hand or foot prints.

I took Av down to the Schroeder Pool again, in Brown Deer, so she can practice on the platforms more.  She is really looking good and can't wait for the diving Meet that's coming up May 9-10.  I'm so proud of her!!  I'm in just awe to watch her, she's doing AMAZING!!

A couple of weeks ago Av and I went down to Chicago for a dive meet.  We had a blast!!  Even though hanging out in Chicago gives me the hives, lol.  It's just a BIG city with way too much hustle n bustle for this "country girl".  Maybe if I was there more I'd get a better handle on where and what to do, but I really don't see being down there often.  I'll muster through it once a year.
We took Hazel and Ms Tami along with us.  Here they are with our one of kind wall art, lol
 We were at the University of Illinois by 8 am both Saturday n Sunday and hung out there till about 3:30 both days.  I was glad to get off the bleachers, that's for sure ~lol
 Avrianna placed 2nd out of 14 girls on the 1M board ~Way to GO!!
 On Saturday after the meet we went over to The Shedd Aquarium.  Unfortunately we didn't have alot of time there, but we managed to fly through it and see most of it.  I was able to sweet talked a worker into getting us into a later show in the 4D theater as we missed our show time, but we didn't get into see the live animal show that we missed.  We still had a great time!

 Av and Hazel "Piking it" throughout the aquarium

 Well they don't call it the "Windy City" for nothing.
 We stopped at Giordano's to dinner afterwards ~
 Meeting up with the rest of the crew.  Nick (Coachie's son that lives in the Chicago area) past diver, Tami (West Bend diving coach) past diver, Hazel, Av, and Coachie.  We had a great time!!  What a great group of people to hang out with.  New found friendships :)  That's what a I LOVE about this matter if you're a beginner, Senior, or past diver everyone is so welcoming and helpful.  Some sports can be SO CLICKY, but this team is THE BEST!
 Back at it on Sunday!
 Avrianna placed 2nd again ~ out of 8 girls on the 3M ~ You GO GIRL!!
 Av n Coachie!!
 Not only was there a dive meet at the Nat, but also a reptile exhibit.  We didn't go into to see it, but they had these HUGE inflatables at the entrance.

 Stopping at Panera on the way home :)

I have to say I totally get it now, when I used to hear how people talked about feeling the changing weather in their body.  I'm finding that my body seems to have a harder time when the weather is changing it up.  Blah!  Today my legs are very weak, looks like I need to relax today....bummer :)

Thanks for stopping by to check up on us.  I hope all is well with you!

Tuesday, April 22, 2014

Thanks ~ but NO Thanks

Why do people see the advice from physicians and pharmaceuticals, as the GOLDEN rule.  I appreciate what they have to say, but if I chose not to go that route why is my decision of lesser value.  I've done my research and I'm not too comfortable forging ahead with what they recommend.  
I think the push for another MRI by my neurologist was a ploy or scare tactic to get me to consider going on a disease modify drug.  The 2.5 hr long MRI I had last week didn't turn out too well.  They took images of my head, neck, AND back this time that's why it took so long.  I wanted all done at the same time as I figured I was already there so just get it done. I was given a disk of the images to take home for my records and with my "untrained" eye I could see the progression of MS.  Unfortunately I received an email from my neurologist and in the text it confirmed my hunch.  Per Dr.  "MRI of your brain does look worse (MS) with 4 new enhancing lesions and one new in upper thoracic cord. Some progressive T1 lesions."  This is in addition to the lesions I already have.  "Enhancing" means they are new and active, when the contrast/dye is administered and an active lesion is "firing" it will turn a bright white so it's very visible.  Once my exacerbation/relapse goes away the lesion is still there, but it is grey in color.  The images also had shown that it has migrated down into my back, sigh.  SO I now have lesions in my brain, optic nerves, and Spinal cord in my neck and back. I kinda new things weren't right as I've had so many sensitivity issues along with lots of fatigue and vision problems.  Bummer, I hate it when I'm right sometimes.
She also stated that one of my liver functions is elevated, so I need to go in and have that rechecked in 1 month.  Not sure what that's all about, but I'm hoping it's nothing too worry about.  I have enough on my plate as it is.
Of course the PUSH is to go back on a disease modifying drug.  I have tried Copaxone which was a daily injection that left massive welts n bruises throughout my body, I was thankful that it didn't work.  With multiple relapses and more new lesions on Copaxone, they switched me to Tysabri, which is a once a month 3hr infusion done at the hospital.  I have to say I was scared to death of this one.  It's one that comes with possible serious life altering side effects.  BUT, I embraced my next challenge and much to my surprise......I worked!.....
On my MS.  
But what it was doing to my immune system was tragic.  I was diagnosed with Malignant Melanoma and multiple Atypical cells because it dropped my immunse system too well, so that was the end of Tysabri.  There are new drugs out there for MS and even ones that are in pill form so no more hour long infusions at the hospital and no more needles.  How cool is that?
Well I'm NOT sold on them.  
They are too new for me and the damage they could do..... I believe they haven't been out long enough to know what dangers lurk.  MS meds are nasty, damaging, drugs...ones to not take likely.  I have found that out more with my personal experiences along with the infinite side effect lists.  I had always thought that "I'll be ok, I won't have any side effect, it'll be fine" , but reality was the drugs were hurting me and possible more then the MS was.  
The new drug that they highly recommend for me is called Tecfidera Biogen Oral (Dimethyl Fumarate) formerly known as BG12.  I was/am leery of any of the MS meds so I do what I always do....Research.  It's so new that I don't think they know what all the side effects and damage is going to be, from being on it.  There are findings, in this article here showing people getting a serious brain infection called PML (progressive multifocal leukoencephalopathy) from being on this drug.  So what else will be coming out in the following months or years about this drug about what it does to a person after being on it.  I don't want to be a guinea pig!  I have to say the more research I do the more I'm opting out of going on it.  I know the neurologist is going to be very disappointed as that's all they know, "I've got a pill for that and if you have this or that side effect we can start you on x y z  pills too".  



What a snowball effect, One that will not make my MS go away and one that potentially could make me even sicker.  SIGH!  I've been down that road before and it's NOT pretty.
Back onto my research......Dimethyl Fumarate aka Tecfidera after I looked into it more is also the same crap they put in those drying packages that are put in with shoes, leather goods, and such to keep away moisture and mold.  UM......seriously you want me to pop a pill that also does what?!?!  I found this article where there is a lawsuit out for people having severe allergic reactions to the stuff just by coming in contact with products that had this chemical/drug shipped with it.  
Scary shit!!  
No wonder the side effects MOST people are complaining about on the MS Tecfidera forum groups is ~ severe flushing/itching/burning of the skin, nausea, vomiting, diarrhea, hair loss, major stomach pain and cramping, and heartburn.  This drug can also destroy Liver functions (remember my numbers are already off), Kidney function, and drop the white blood count so fighting off infections are much more difficult (didn't I already go through this and ending up with cancer).  
COME ON PEOPLE ~It's your body trying to fight off this poison you are putting in your body.  Maybe it's just me but, thanks NO thanks.... I'm going to pass!  I'll take my chances.  Call me crazy but I'm more afraid of the drug then I am of MS right now.   
I'm suppose to try and be less stressed as stress is a HUGE trigger for MS and I don't think me feeling like total shit for months on end is going to help out.  YES ~ I've seen on the forums the majority of people are sick for months, some needing hospitalizations, and some even resorting to quitting the med as they couldn't tolerate the side effects any more.   I've also seen people say that they are SO SICK, but they are going to stick with it in hopes to make MS better.  That's just crazy!  I'm not so sure this is the yellow brick road on want to get on.  I'll stick with trying to eat right, exercise, and slowing down more to "smell the roses".  I don't know what I did or why I had to get MS, but I HAVE MS AND THERE IS NO CURE....... yet!  There is NO magic pill !!!  I will be determined and dedicated to making MYSELF healthy in hopes if I give my body the right tools it will do it's job and repair the damage.  When my time time comes.   
It is what it IS!
What a rebel ... right?!?  This goes back to my first statement...why is it that when I decide to be healthier I'm poopoo'd, but when the holy'r then MD wants to pump my body with poison and possibly make me sicker they are looked at as amazing.  
I say this with Danny all the the medical field there are MANY things that CAN be done, but are the being do to him or for him?  
BIG difference!!  
I want a quality of life not a quantity.  Hard as it is to except we ALL are terminal, we are ALL dieing with every day we are one day closer.....some have it harder and some have it shorter.  All I know is I have MS and someday I'm going to die, but until mt day is up I'm doing to enjoy my days as much as I can and hope for the best.  That's all I can do!  I'm not going to sit around and stress myself out with things that I can not control, as that is no good for anyone.  I got another crap hand and I have to play this one out too.  Maybe there will be a treatment out there that is right for me someday, but right now......I just don't see one.
I go in to talk again with the Neurologist in a few weeks, maybe she can shed light some light on this, but I always have the thinking that they are looking at it from a Dr's perspective and NOT the patients.  I wonder if I ask her if she'd do it if she was in my shoes...........
would I get a honest answer?

Thursday, April 10, 2014

Springing Ahead

Our Spring Break to WI Dells at the Kalahari Resort was a blast.  The kids had alot of fun. Here are some photos of the day ~
Wow have these two grown :)
 How cool is this!!
 First ride is the water roller coaster

 Then it was onto the next big ride.  This one they stand on a drop door in the floor and then all of sudden the door opens and wham you are free falling in this water tube, EEEEeeeek!  Avrianna LOVED it, of course

 I was able to sit back enjoy a couple drinks and read my book ~
 They had a tons of great things to eat :)
 It was back n forth from the indoor water park to the indoor theme park
Lazer tag....I think they did this about 5 times :)
 3D Lazer game
 They Placed
 She made it all the way to the top!!

 The rope climb....scary!!
 Back in the pool ~ Can you find them?  I'm sitting at our table so I had a great view of the Wave pool
 Again back to the theme Park ~
Doing a Lazer maze.  They had to get from one side of the room without touching any of the lazer beams

My niece Whitney had her baby boy on ..... April 1st.  At first I didn't believe my sister when she texted me a photo of a baby at 5:30am.  I don't care what time it is, your not pulling the wool over my eyes, HA!  Well she got me as it was real.  Ethan Matthew Griffin was born at 2:43am weighing in at 4lbs 11oz and 17.5".  He's adorable!  I haven't been able to "SEE" him in person as he is in the NICU and with the bugs going around they are not allowing anyone to visit but the parents n grandparents.  So I have to wait, impatiently I might add, to meet this lil sweetheart.  He is doing amazing and it looks like he's going to be going home possibly this Friday which is awesome as his due date wasn't till May 12th.  Way to GO, Ethan!

It the year of boys around here as Danny's Nurse just found out she's having a boy too :)

Sunday we celebrated my Grandma's 80th bday.  I had the honor of making the cake.  She was the one that got me started in making cakes back when I was a kid.  We were able to get some updated generation photos at the party.
The BIG ONE ~ 6th generations, unfortunately Danny wasn't at the party so he is missing but there in spirit and Baby Ethan will replace the baby doll that Great Great Great Grandma NaGreen (101) is holding.  How amazing is that!!  Age range 101 - 1 week
 Me and Grandma Bev with her cake :)
 Here is the 5 generations of ladies on my side
 and 5 generations of ladies on my sisters

Avrianna completed her 1st year of Brigade.  She really enjoyed being there :)  At the awards banquet she was awarded many patches due to hard work throughout the season.  Now onto next year.  She is still going to be at in the building 2x a week till the end of the month as she is taking a Hunters Safety course.  Plus she is going to the week long Camp for Brigade this summer.
Award Nite!

Gunner got his Spring "Do" ....looks like a whole new dog ~

Here is Avrianna's first real practice at the platforms with Coach Todd at Schroeder in Brown Deer, WI.  She absolutely LOVES it.  So I am trying to get down to Milwaukee (Brown Deer) once a week to get her some practice.  Avrianna plans on competing in her next meet in May on the platforms :)