What we're up too

We now have skiers ~ There was a break in the Arctic Blast temps for a day so I took Avrianna and my nephew Tyler skiing.  It was the first time for both of them.  They LOVED it!!  They were on the hills for 8 hrs......both were pretty soar the next day, but I think if I asked if they wanted to go skiing again they would have went.  I took them to Nordic Mountain, it's about 50 minutes away from us, the temp was a balmy 30 degrees, so it was perfect skiing weather.  I hung out in the lodge for the day and watched them.  

They both were pretty nervous in the beginning

 I got them both 3 hrs lessons right away in the morning ~
Av and her instructor

 Tyler and his instructor

 Learning ~ I found it strange that they don't teach them to use poles anymore

 Break Time ~

Both kids LOVED their instructors :)  Half way through they got Hot chocolate for the kids

 By 1 in the afternoon they were "Pro's" and on their own.  They did GREAT!

Last week Danny threw another curve ball at me.  He started peeing blood.  He's NEVER done this before so you can bet I was lil alarmed.  I ran this over to the local hospital so they could test it and start a culture.  The culture grew out Enteroccoci bacteria.....even though he had an infection he's white blood count was fine.  Once again Danny is an enigma that has all of his Dr's and myself scratching our heads.  

 He started yet again another antibiotic (boy I hope the C Diff stays away, as you normally get C diff my being on multiple antibiotics).  It was so WONDERFUL to see his smiley face once again, I knew he was starting to feel better.  YAY!!

 The weather continues to be unbearably cold.  We did have a couple days of above zero temps, but we are back in the Ice Age once again.....where's this global warming they are always talking about?  Brrrrrrrrrrrrrrrr ~ the kids enjoyed being off of school for 2 days do to the extreme cold weather.

 You know it's cold out when everything in the INSIDE starts freezing over.  YIKES!!

Avrianna had her dive meet this last weekend.  I am SO PROUD of her!  She is doing amazing.  Despite her having a bad fall/smack at practice on the 3M (high dive) she got back up on the 3M board finished her event and placed 2nd.  WAY TO GO!!
Click HERE to go to her video I made of her meet :)

Yesterday I got myself a new car.  I can't wait to pick it up Tomorrow.

Thanks for stopping by to see what we are up too.  I hope this finds you well.  

Ringing in the New Year

WOW ~ 2014 is here!  I can't say I'm disappointed to see 2013 leave, as it had it's fair share of challenges for us.  I can only hope the 2014 year has good things in store of us.  Heading out of 2013 and coming 2014, it is already a rocky start, so to say I'm cautiously optimistic is an understatement.

Danny is now 10!!  Double digits people!! 10 can you believe it!!

On his Birthday (Dec. 23rd) We opened all his cards that he received from his Birthday Card Shower!

 Thanks to everyone that sent him a card.  He just LOVED looking at all the cards and listening to us read each and every one.

Christmas 2013 was pretty low key for us.  Danny got a GI bleed and was feeling under the weather and I am still trying to adjust to living on steroids right now.  My immune system is tanked, I'm so gittery that I think my skin is going to crawl off, and I haven't seen any improvement on my symptoms as of yet.
We went over to my Grandparents house on Christmas Eve and on Christmas Day we hung out in our jammies, ate a bunch of snacky food, and enjoyed us being together.
Love these Christmas Elves SO VERY MUCH!

 Nanny (my mom) with all her Grandbabies :)

 I swear I can't take him anywhere....LOL!  Danny why do you let your dad wear your hat?

Christmas Morning !!

 Hmmmm - Santa and I need to clarify being on the "Naughty" or "Nice"  list, LOL

 Danny, are you in there?

Of course there is the "some assembly" required to do.  Dan and Avrianna putting together the gas grill

The weather has been just bitter cold here.  It's bad when Alaska is warmer then it is here.  On Monday it's forcasted to be -10 w/o the windchill and with it is to be right around -32.  Where's our global warming?  There wasn't alot of outdoor playing during winter break with the weather being so damn Cold, but we did get out here n there.
It's so cold everything outside is "fuzzy" with ice.  It is very pretty to look at, from indoors, by a fire, with a hot drink, wrapped up in a blanket LOL

Snow Angels????????  Or not!

 I even got outside to help them with their snowman :)  which ended in a snowball fight provoked by..... ME!

The house was DeChristmasized before the New Year.  What a good feeling it is to have all that done and put away.  It's always so beautiful to have all the lights up and gifts around the tree, but it's also uplifting to not have to worry about it anymore.  Until next year!

New Years Eve we had our friend over for dinner and a movie.  My nephew also slept over so Avrianna was occupied for most of the nite.  We had a wonderful dinner with steak, crab, and twice baked potatoes.....YUMMY.  Did I tell you what a great cook Dan is?  The new grill worked like a charm.  We watched an oldy but goody movie, "Varsity Blues" and we hit they hay before midnight.  I managed to stay up with the kids to watch the New York ball drop but was in bed right after.  The kids stayed up till midnight.  I found them both passed out on the living room couch with the tv still on, when I got up in the morning for Danny's 5am meds.  Too cute!!
My New Years project was to put together a 1000 puzzle.  With some help here n there I was able to get it finished in 1 day :)

We have some serious health new years resolutions to be made in this household for 2014.  Danny's GI bleed turned out to be much more.  He stopped having normal BM's, retaining urine, and was in alot of discomfort.
So there was Alot of this face when he was awake.  Breaks my heart

He slept alot, which I believe is his pain management.  Guess I'd rather see him comfy asleep instead of awake and miserable.

 I emailed his Dr's with my concern and even with them all being out of town.  They got back to me via email and put in orders for labs.  I ran in a specimen for them to check out and low and behold he tested positive for C Diff, which is a nasty bacteria that he has in his gut.  Poor bug!!  Since we started the antibiotic he is starting to come around and we'll even see a smile/grin once in awhile.

Danny continues to have private physical therapy here in the home.  PT Peter came on Tuesday and brought Danny's new AFO's (shoes he wears in the stander).   Here is a picture of them back in the fall of '09 and then the picture of them together on Tuesday.  WOW has he grown!!  I think PT Peter gets more of a "workout" now, LOL  My baby isn't a baby anymore....what a Lil Man

 As I stated before I have yet to see any improvements with my MS symptoms since starting this round of steroids.  I was I could see/feel some benefit ....anything!  It's disappointing.  I can only hope that my MS will be in remission soon, but until then I just need to learn to live with it.  I have looked into some of the new meds that are out there and I have to say my options are not impressive.  I'll continue to fight, don't fret about that, I just have to find the means to do it.
Today Avrianna is back to school from winter break.  I'm relaxing on the couch updating the blog and putzing around on the computer in front of the fireplace.  Dan is in the workshop cleaning out his tool boxes.  And Danny is chilling out being the cool kid that he is.
Here's to a NEW YEAR with new possibilities.  Wishing you and yours a great 2014!

My Day!

It's that time of year again.......December 22nd.  The day where I allow myself to bring out all that destructive thinking.  All the what if's, why's, and every other question a special needs mom dwells on.  I try my best to bottle it up, but today is MY DAY.

10 years ago today ......

Was the last day I was to ever be pregnant

It was the last day my Son was to be "healthy"

Oh ~ All the dreams I had for my family....... little did I know everything was going to forever be changed and the dreams I had, were in fact ..... just dreams.

How does one recover from this?  Not just this small helpless lil baby boy ...... but how does a Mother, whose sole purpose is to protect her child.....could not FAILED

NO PULSE!

NOT BREATHING!

START CPR!

These words will haunt me for the REST OF MY LIFE.  Not to mention remembering the ungodly screams and cries that came from my sister the moment he was born.
I knew my son was in the fight for his life, I knew I didn't keep him safe,  I didn't do my job.

The hours that followed his delivery delivered one blow to my heart after another.  Seizures, Brain Bleed, Brain swollen, Brain Damage................

My son was in a tailspin!!  I heard the words death, vegetable, and failure to thrive.

What is a Mother suppose to do?

I was devastated, I hurt in ways that are indescribable.

How awful is this ... all these painful memories of my sons birth.  A time that is to be happy and a celebration but my sons experience is FAR FROM THAT.

Myself, my family, and most important my son were robbed of so many things that day.

How naive were we?  We were to have a baby boy 2 days before Christmas, be home in 24 hours, and live happily ever after.

There are SO MANY things I would have changed that day, looking back I get so angry and sad with all the what if's and why's?  What I would give to be able to rewind and go back to that day.  I look at his life and how hard it is, how painful it is.....it's just not fair.  WHY?  What did he do to deserve the life that he got?  Why couldn't I make it better?

Danny can't be fixed!

He has been through and will go through things in his lifetime that are just wrong, painful and terrible.  He never had a chance to just be a lil boy.

If things turned out differently ~ I can't help but wonder......what would he have been like.

Would he have been into mischief?
What sports would he have played?
Do you think Avrianna and he would have gotten along?
I think he would have been a smart cookie. Don't you?
Would he have fallen in love and had a family?
What do you think he would have been when he grew up?

Even something is simple as.....
What would his voice sounded like?  This one hurts, not hearing him.

So today I sit and look at this Handsome Lil Man my son as become and dwell on all the lots dreams I had for him.  I will hurt, I will be sad, I will be angry for the Lil Boy my son was never allowed to be.

As for Tomorrow ~ tomorrow is a NEW day!

Tomorrow IS a day to CELEBRATE!  To celebrate MY SON'S BIRTH and celebrate another year that we were able to make wonderful memories with him.

Danny is here and I am forever grateful he is!  I am so proud of him!  He has taught me more then I will ever be able to teach him.  He is a warrior and My HERO.
I LOVE you Danny, more then you will ever know.

To add insult to injury I sit here and wonder how long I will have to be the mother my kids deserve.  Multiple Sclerosis is a scary disease that doesn't care how hard I've work to take care of myself, or that I have 2 kids the need me.  It as its own agenda.
My body is attacking itself, there's no cure, it doesn't play nice.
I had another MRI on Friday which has multiple new lesions (sores) not only in my brain but in my spinal cord.  Here are some photos for you to see what they look like.  These are NOT my images but close to mine.
This shows new "Hot Spots" active lesions (they are bright white).  I have a new significant sized one on the left side of my brain.

This one shows the lesions after the lesions have calmed down.  They are still there and the damage has been done, but instead of bright white they are more grey on the images.  I have multiple grey spots in my brain.  These ones are probably contributing to my concentration, balance, and headaches.  It's so humiliating when the Dr asks me to close my eye with my arm out and stand straight as I tip over or my favorite ~ sit down, close your eyes, arms out in front and try to touch your nose with your pointer finger..... I can NOT.  Yes, I would fail a field sobriety test without even drinking.  Sigh

If you are as "lucky" as I am you can get lesions in your spinal cord.  These lil bastards or "waegners" as I call them can cause alot of grief.  As there isn't alot of room for the sore in this space without them reeking havoc to your system.
You can see the grey spots in the spinal column here (long black matter between the vertebrae down the back)

 The Dr. believes the lesions in my spinal cord are the ones causing most of the issues for me at the moment.  I have at least 5 in my neck.  We didn't take imaging of my back, so we don't know for sure how many are down there, but the Dr feels I probably have more there also.  With the issues I am having in my legs and feet for the last month, she believes the lesions are more then likely lower in my spinal cord.  She believes the lesions are more along the side of my spinal cord as I'm only have sensitive issues (tingly, numbness, and electric), if they were more in the middle of the cord I would have more functioning problems. UGH!!  So I get to be on a steroid fun filled holiday,. I chose to try the lower dose oral steroids vs the BIG dog IV this time around to see if it helps calm them down.  I've worked so hard and be "healthier" and I don't want to just throw that away with being on these steroids.  I also was sent home with a couple different med pamphlets to go through.  It's kinda scary as MS meds are NOT fun.  I'm trying to fix one thing and there WILL BE something else getting screwed up.  SIGH!  I will do some research and ponder on them, but it's not a choice I will chose lightly...if at all.
This just SUCKS!!

Party ~ it's always exciting

He's ONE IN A MINION ALRIGHT ~ Crowned head Minion

The cake I made him ~ along with Avrianna's help.  She made the Twinkie Minions :)

 Yesterday we had Danny's birthday party.  I can't believe that in about 1 week he is going to be 10.  AMAZING!!  I can't say the party went like I had planned it to, but then again what does.  LOL.

This party, I believe, was our smallest group we've had for his party.  I had invited 80 people, about 44 were going to come and due to illness' 30 people were here.  It was a wonderful group and we definitely had lots of food to eat with the last minute cancellations.  It's SO GREAT to get together with these families.  They are wonderful people that we are truly blessed to have them as our friends.

Our first guest to arrive.  Danny's girlfriend Wyllow.  Isn't she a doll!!  I'm happy to say that Danny's Special Needs Columbia car seat/stroller has found a new home.  Doesn't Wyllow look like a big girl in there :)   I Love that she will put it to good use.

About 30 minutes after the party started.  The BIG MAN from The North Pole came to visit.  Santa has come to all of the parties we've had for Danny....blizzards and ALL he has come!!  We LOVE this man ~ What a heart of Gold!!

Here's some pics of Santa and the kids ~ He's so good with them :)

Nicholas

 Ila

 Ryan

 Alexa

 Henry

 Madi and Henry

 Jacob ~ that smile says it ALL!!

 Tyler

 Indyonah

 Haylin

 Brayden

 My Other One in a Minion ~ Avrianna

 Wyllow

 Raymond

 Just warms my heart!!!

 Thank you SO MUCH Santa for coming to make Danny's party extra special!

Danny with his "Girls" ~  All four nurses together in one place!!  Of course I'm going to to take a photo.  I can't tell you enough how much we appreciate everything you girls do with Danny.  We wouldn't be the family we are today without you.  We LOVE you all very much and we are SO BLESSED to have you in our lives.

 What was to be a party and celebration took a terrible turn.  Just as we were finishing up some photos we notice that my 81 grandfather was looking very pale, diuretic, and for a few moments even passed out.

 Dan went into EMT mode and the 4 nurses went to work until the other EMT's and ambulance arrived.  So the party got alil bigger with the extra medical help. A HUGE Thank you to our nurses for being there and stepping in to help.
I moved the party downstairs to keep the kids occupied and so they wouldn't freak out.  They had fun watching a movie, Despicable Me 2 (of course).  Once the ambulance left along with 6 of my family members we were back into entertaining mode, but with ALOT more extra food.  Too bad the EMT's didn't stay for dinner.
Danny wasn't the happiest Minion as the party went on, so we put him in his daddy's recliner, took some pictures and sang Happy Birthday so we could cut the cake.      

 Singing Happy Birthday!

The party was a success, but I have to say I was thankful today was a low key day for us.  Lots of excitement over here, planned and unplanned.  I was alil bummed that with all the commotion that I didn't get a group photo of Santa and all the kids together like I have in years past.  At least we were able to get the ones we did get.  Until next year!!
Grandpa is doing well...they discharged him from the hospital that night with really no answers as to why or what happened.  I'm sure there are a few things that play a factor in what went on here at the house but thankfully the tests for his heart and such came back good.  I know what I saw and it wasn't just from low blood sugars or a GI thing.  We'll see.....kinda makes me wish I was at the hospital with him to get more to the bottom of this.  It's not my first time at that kind of rodeo, lol.