Life As We Know It

Summer Pictures

2011-07-13T13:42:00.000-07:00

I thought I would post some of our summer pictures up to this point.

The other day I went out side and could not find our little kittens. I could hear a faint meow but could not find them anywhere. Finally after much looking I came across these little eyes looking up at me after I pulled all the golf club out of the golf bag.

Stuck and I mean STUCK!

Pascal looking up at me.

Oreo, was really in there. ha ha, if you look really close

you can see them both wedged in there.

Pascal is on the left, Oreo is on the right.

Kort trying to figure out how to get them out,

with lots of shaking the bag upside down, gloves and

patients she finally freed them.

I found them asleep in the camp chairs.

The kids are loving their kittens.

Kids at the pool!

loving the pool time.

We have been trying to get Whitnee and ipad to help her with

her OT, and to have before she has her spinal sugery, so she has something to do in the hospital.

I was contacted by a friend of mine to see if Whitnee would be interested

in getting her daughters ipad, since they had just received another one.

Whitnee getting her ipad!

opening the box

She was so excited.

trying to play with it.

checking out the games.

Whitnee and Presley

They had so much fun chasing each other around

BFF'S are they not the cutest cuties!

THANK YOU PRESLEY!

So we try to do at least one cabin trip a year. With Whitnee getting older it is becoming much easier

for us to do so. She communicates so much better now.

This year we went up the 4th of July weekend. With such a wet winter the pass had just barely been opened

up over Baldy Mountain. This is driving past Pass Lake.

I don't EVER remember seeing the lakes frozen over while coming up

to the cabin. Seeing lots of snow yes, but never a frozen lake.

(I have video of our drive, with all the snow, I just need to figure out how

to post it).

We have also started doing service projects up there, to try and help

my mom with the up keep of the cabin. This trip we redid some of the benches

I think they turned out GREAT!

My dad's famous fire pit!

July has been an interesting one so far, at least the first of it.

We normally don't get Monsoon season or weather till the END of July and the first part of August.

This one was so pretty as it came through

I LOVE thunder storms!!!

Whitnee helping out in the Garden can be hard,

she can't weed or water

but she sure can help with the pea pods!

She really liked them too!

So far that has been our summer. I am pretty sure Nate took a lot more

pictures of the cabin and I will try to post video later.

Shriners

2011-06-26T04:22:00.000-07:00

We had yet another appointment at Shriners this week.

Out of all of our appointmenst with Dr.'s. Shriners is the most

exhausting on both Whitnee and I.

It NEVER fails that on her ride home from there she falls asleep

I believe it is the stress that comes from the visit.

At these appointments I actually get to see how Whitnee's body

is growing through x-rays.

With the help of Shriners Whitnee has had 2 seperate surgerys

for her achillies. The Last and most recent being the worst one yet.

Dr. Marcy has been the BEST Dr. She is so loving and sure makes

Whitnee feel comfortable while she is there.

Last time we were there, I was feeding her lunch during our visit.

She came in and took the food right out of my hands and started feeding

Whitnee and talking to her. She is VERY personable.

This week we went to find out how bad her Scoliosis is.

Dr. Marcy tried to "beat around the bush" so to say about options for Whitnee.

She asked about the chest support, if I had heard about it.

Which I had, but they are not very good with SMA kiddo's because

they are Belly Breathers.

So after her trying to find a kind way to tell me Whitnee needed surgery.

I came right out and said.

"Look I know she needs surgery, we have a few friends who are the same type of SMA

as Whitnee and both have been Very successful with the Veptur Surgery."

The re leaf on her face spoke volumes.

She turned to me and said "ok, I will be right back I need to make a phone call"

Which I have learned is a good and bad thing.

In our case it was good. We were able to meet with the Surgeon right then and there, to discuss the risks.

He also mentioned that the SMA kiddos do really well with the Veptur, and explained how it works.

They go in and attach 2 titanium rods, one for each side of her ribs. They attach at the top of her ribs and then

secure in her hip bone. Then every 6 months she goes in and has them extended, so they grow with her.

I am SOOOO glad she made that phone call, it would have taken MONTHS to get in and see him.

We are looking to do the surgery in the next few months.

Still waiting for them to call and give me the date.

I told them asap, we can't do it during respiratory season.

Here is her x-ray

The picture on the right was taken back in 2008

the one on the left was taken last week.

They never did tell me the percentage of curve,

but the surgeon said that surgery needs to be done with in the year.

I will be calling the Dr. to get the percentage of curve, I am curious as to what it is.

Also while there, we asked to have her right arm x-rayed too. She had hurt it a week before

and was still complaining about it, so as a precaution to make sure it was not broken.

It came back looking good or so we thought till I got a phone call a few days later from Dr. Marcy

Who said that the Radiologist and her sat and looked at the x-ray for quite some time trying to figure out what was not looking right. They could not put their finger on it but they knew something was not right.

So they called me and told me to wrap her arm to her chest with an ace bandage for 5-6 days and see if that helps. They said the bone did not look right. They could not see a break but that did not mean there was not one. Sometimes they don't show up for a while or ever.

So we put a bandage on her, which she HATES! Later the first day, she looked and me and said,

"mom, my arm does not hurt any more"

Not sure if that was true or her way of saying TAKE IT OFF!

If it is still hurting next week, we have to go back up and have both arms x-rayed so they have something to compare it too. Heck for all they know it is just how Whitnee bones truly are.

Still does not make it easy for her to get around, she can't drive her Walle because she is right handed.

So it has been a rough few days.

I will post later what we find out.

Cinderella's Grand Ball

2011-06-26T03:35:00.000-07:00

Whitnee had the opportunity to attend

Cinderella's Grand Ball.

She was soooo excited when I read her the invite. The first thing out of her mouth the morning of the ball was "I get to go to a Princess Party"

HopeKids did an amazing sponsoring this event for all the little Princess who deserve to have one day where they don't have to worry about treatments, therapies, etc.... they can have the spotlight on them and help them celebrate who they really are. PRINCESSES or Princes for that matter

(yes there were a few of them there too).

When we walked in the doors, they asked for Whitnee's name

and then announced her as

Princess Whitnee from the Kingdom of Saratoga Springs

and then everyone applauded her arrival.

(it was really cute)

She was also given a beautiful necklace with her name on it.

We quickly went back outside to ride in the Carriage

(the line was REALLY short-I don't think anyone really knew it had arrived yet).

This amazing Carriage pulled up right behind me when we got there.

(Whitnee was more excited about the horses then anything else, she LOVES horses)!

Here we are in the Carriage, she thought it was pretty neat!

Next we were seated for dinner,

(she was so tired, I was not really thinking

when I took her to the pool early that morning for

a few hours-she fatigues really fast).

Our yummy dinner, she even got her OWN plate.

(it was really good)

Yummy cupcakes for dessert!

Whitnee really liked these

(they were strawberry).

After we ate, Whitnee got to go get her picture taken Professionally

in her Princess attire.

Can't wait to see how they turn out.

While getting her pictures taken they announced the

DISNEY PRINCESSES

then they came out to the courtyard where we were.

Whitnee with Belle, Jazel, and Pocahontas

(these 3 actually came over and found Whitnee rather

then us finding them).

Whitnee and Tinker Bell

(I love how she watches them)

Jasmine and Whitnee

Mulan, Whitnee, and Rapunzel

Sleeping Beauty (Arora) and Whitnee

(her favorite, but I think Arora now has

some competition with Rapunzel)

Cinderella, Whitnee, and the Fairy God Mother

(I love how excited she is here)

Whitnee and Cinderella

It was an amazing night!

Whitnee's clock struck 12 early,

when she started having a melt down waiting for the Princess

class (how to curtsy, etc...) and the dance with the Princesses.

she left with all of their autographs and great memories to tell

Daddy, Kort and Nic.

Whitnee sound asleep on the way home.

time 6:30 p.m.

Thank you HopeKids for a wonderful evening!

2011-03-30T12:54:00.000-07:00

Nic was one of the winners at his School Science Fair this year. He got the opportunity to attend District.

He was really excited and nervous too.

Here he is waiting for the judging.

Our cute friend Maddy made it too

Her's was on finger printing and how similar they are

with family members.

It was a lot of fun for them!

Nic also got his Weblows and Arrow of Light Award in Scouts.

Nic putting my pin on me.

I love the painted face, it represents his journey through

cub scouts.

His Arrow of Light Award

He was really excited for this!

So proud of you Nic!

Nate and I got the opportunity to go and meet the

Pioneer Woman at her book signing.

Meeting Ree Drummond

(I must say we love cooking out of her cookbook)

2010-12-21T03:24:00.000-08:00

Wow, this year has flown by, I have been awful at posting on our blog this year.

We have had a busy, fun and healthy year. As it comes to a close I thought I should sit down and update our blog.

(I must confess up front, I was horrible taking pictures this year, we did go on a few trips, one to Idaho and the other to our Cabin. I know we took pictures but I can't find ANY of them, I need to check Nate's computer to see if they are there)

Our summer and fall were busy with FOOTBALL.

Nic started his first year with the Thunder Football being in 5th grade we thought it would be a good experience for him. He was old enough to understand the positions, the game and the rules. He got the BEST Coach out of the three 5th grade teams.

With Conditioning every night for a month and then practice 5 nights a week till school started then it dropped to 3 nights a week, we were busy. He started out as the left lineman where he learned how to hit, block, etc... He really liked his position until one game, things did not go so well with our Center and the Quarterback. Nate asked Nic to hick him the ball after the game just to see how he did. And to his fathers amazement Nic had his fathers talent!

Nic approached his Coach and asked to try the Center position. Both the Quarterback and Coach were amazed at how well Nic did in snapping the ball.

From that moment on Nic was the NEW Center.

Then ended up going all the way to the Championship game and winning 2nd place in the league!!!!

What an awesome season.

(we have been approached by a few coaches about recruiting Nic for next year as the Center too).

Pictures will follow.

This is Whitnee's first day of school 2010

She was so ready for school to start this year!
She attends Achiever Preschool by Skype and loves every minute of it

Kortnee and I got to attend a Bridal Shower of one of our dear friends, our evening started out at PF Changs for dinner

We then went to a Black Tie event that Dillards was putting on.
We got our make up and hair done and then had the chance to go watch
some Dancers from Dancing with the Stars perform.

Kortnee getting her make up done

Isn't she BEAUTIFUL!!

Me getting my make up done.
It was a very fun night out with the girls!
I loved spending time with Kort!

We made yet another trip to Shriner's this year, I am really bad at getting Whitnee's Wheelchairs looked at so I FINALLY got Walle in after 3 years.
um they are supposed to be looked at every 6 months. But who's counting right.

Here are the girls waiting for Walle to show up!
(I can't find the one of Nic)

Whitnee turned 5!!!!

She actually blew the candles out by her self!!!

Opening presents
(the license plate there on her table is
Tinkerbell saying
"Catch You LATER"
it is attached to the back of her Wheelchair
VERY appropriate for Whitnee)

Halloween was fun this year

Kortnee and Nic cleaning out their Pumpkins

Whitnee cleaning out her's

This year I bought books with patterns
oh it was FUN!!!!

Whitnee's

Nic's

Kortnee's

A few things I worked on this year in my home

I painted and decorated my Bedroom

and my Bathroom!
I love how they turned out!

Nate stayed busy with work, 4 wheeling trips, etc.

Wishing you all a MERRY CHRISTMAS
and a HAPPY NEW YEAR!

(I hope to be better at taking pictures and blogging next year)

First Day of School 2010

2010-08-25T09:02:00.000-07:00

It is hard to believe that School has officially started.

The silence was short lived, due to Nate waking up the 4 year old this

morning but oh well.

Here are their First Day of School pictures.

Kortnee 8th grade

(sigh I am not old enough to have an

8th grader am I )

Nic 5th grade

(I remember his first day of Kindergarten

Sigh)

Both excited to head out the door!

Our Mountain is on fire

2010-08-16T14:59:00.000-07:00

One of my favorite things about summer is Thunderstorms, we had one roll through today with a lot of lightening. This was the outcome of that wonderful storm.

fire/smoke

helicopter landing just up the hill from us

helicopter dumping water on the fire.

Summer Pictures

2010-08-16T14:17:00.000-07:00

Here are pictures from our summer break!

Whitnee got her casts off!!!

finally after 3 months!

We finally got to see her feet!

(sorry it is so yucky)

AWWWWW

(I can move my feet now!)

Kortnee Turned 13

favorite book

Hugo Cabre

I love that smile!

4th of July

Sparklers!

Whitnee's favorite thing to do

4wheel with daddy!

I found her splashing in puddles

one afternoon.

Lots of giggles!

Nic started football!!!

conditioning camp

Conditioning camp

football tryouts-yep dad is helping out!

Nic hitting his dad

Nic's cheering squad!

I became a SAVVY SHOPPER!

(just a few of my deals)

paid $2.81 saved $53.67

98% savings!

paid $6.54 saved $31.12

84% savings!

YEAH!!!

We did manage to make it to Idaho (very FAST trip) and to the cabin this year and Kort got to go to Stake Girls Camp.

Pictures to follow.

Topaz Mountain

2010-06-16T16:52:00.000-07:00

Since I am "johnny on the spot" I now finally posting pictures of our day trip to Topaz Mountain

We went about 2 months ago on a nice warm sunny day. (yes there was one in April).

It was about 1 1\2 hours south west of our home in the middle of NO WHERE!!

It was so pretty!

and so quiet

and you could see for miles.

Nate and the kids digging for Topaz.

dumping water on the dirt and digging.

Nic trying to find some Topaz

Kortnee trying to find some too.

Success!!! can you see the Topaz stone...

GREAT FIND KORT!

Whitnee watching and holding on to Gidget.

Second find of the day. A little LIZARD.

For those of you who don't know Whit. She is TERRIFIED of anything that crawls and flies. I think mostly because she can't move away from them on her own and because she can't swat things away.

BUT here she actually asked to TOUCH the LIZARD. I think because DADDY was holding it tight.

Now every trip has a little excitement right!

well, as we were trying to find the right spot to dig, we were driving around a HUGE water hole and out of NO WHERE a JEEP came flying by right through the water and this was the out come.

It was a good thing we were in the VAN as a FAMILY or I think my husband would have gone after them with out ANY hesitation. It was a good teaching moment though about being considerate to others no matter what. Although I did wish that they would end up on the side of the road with an empty tank of gas

and 3 flat tires, but that did not happen. DANG IT!!! Carma will come around right.

We had a great time and are trying to decide where to go next.

Here's a good start to our STAYCATIONS this year!

Our Night at the Royal Ball

2010-05-13T11:13:00.000-07:00

A Royal Ball for the most deserving children ever

Hopekids with the help of Cinderella (Linsey Holley) hosted a Royal Ball for children with cancer and life threatening diseases. It was held at The Castle in Layton, all of Cinderella's friends were there, Belle, Tinker Bell, Aurora, Snow White, Mulan, Jasmine, Pocahontas, Ariel and Tiana.

Each Prince and Princess were dressed in their best formal attire, ball gowns, tiaras, swords and wands. The Ladies in Waiting helped the Princesses with their make-up before they were taken over to get their pictures taken with All the Disney Princesses.

There was a live orchestra, dancing, and a royal jester who keep the kids entertained.

As the King, Queen and Royal Princess was announced, the trumpeters blew their trumpets to let us know they were coming.

As every Prince and Princesses and their Court (their family) were announce to the King, Queen and Royal Princess the trumpets continued to play.

Cinderella called all the Prince's and Princess in front of her and read them a magical story and then each with their Magical Wands chanted "Bibbity, Bobbity, Boo"! and the magical water fountain turned on for them. (you could hear the cute little gasps from all the girls).

As the night ended each Prince and Princess were given Autograph books to have the Disney Princesses sign.

This was truly a magical night for these kiddo's and one I am very grateful we were able to attend.

I wanted to Thank Lindsey Holley and Amy Oldham for all of their hard work and time that went into such an amazing event. It is one we will ALWAYS remember.

Outside The Castle

Both of our Princesses outside the Castle

Entering The Castle

The Beautiful Staircase

(kort disappeared so she did not get hers taken :( )

Ladies in Waiting putting on her make-up

Pucker Up!

BEAUTIFUL!!!!!

Pictures with the Princesses!

Cinderella gave Whitnee a kiss on the cheek when done

and she talked about that the whole night!

Cinderella tell the kids the story.

Ariel and the girls

Kortnee talking with Belle

Whitnee was so facinated with her gloves, she would not take

her eyes off of her hands.

I love how they are looking at her

Their FAVORITE Princess!

The Fairy God Mother

which I believe we ALL have one!

My Mom (the Queen Mother) and the Fairy God Mother

The Royal Princess

The Queen (some how missed the King)

Dancing, Dancing, Dancing!

It's always funner to dance WITH OUT Walle

(her wheelchair)

Thanks again for a great night.

Princess Royal Ball

2010-05-13T07:17:00.000-07:00

We had so much fun at the Royal Ball.

We were interviewed by Desert News (twice) and was surprised

to find us actually featured in the story.

(it was really loud so they did not get the spelling of my name right)

Our First Royal Ball

I will post pictures of the night later.

Princess Ball

2010-05-11T16:42:00.000-07:00

We received an invitation to attend a Hopekids event tomorrow night by one of my daughters FAVORITE Disney Princesses CINDERELLA held at the Castle in Layton.

We are all so excited to go, there will be dancing, dinner, make-up, nail painting, pictures and a carriage ride.

Who needs Disneyland when the Princess comes to you?

(some day we will make it to Disneyland)

Surgery pic's and update.

2010-04-19T11:26:00.000-07:00

I am sorry it has taken me a few days to post.

Whitnee eneded up having Surgery on Friday the 16th on her feet.

Nate and I went in a little nervous because of what the Surgeon had explained to me what she planed on doing.

She said that they were going to make a small incision in the back of her ankle and cut the tendon and let it fly on both feet, and on the left foot she would make an incision on the arch of her foot and release the tendons there to help flatten out her foot.

I was NOT okay with the thought of the Achilles Tendon being cut and NOT reattached.

As we sat down with the surgeon on Friday morning she went into a lot more detail about the surgery (which I wish she would have done a week earlier so I would not have stressed so much)

But she informed us that the tendon she would cut would not affect her foot as we had expected it to, and that there are 3 other muscles that help in doing the same thing so her foot would still function as it should.

They just wanted to get her standing.

Here she is with Daddy before they took her back to surgery.

(versed in her system she was really loopy)

Here is the Anesthesiologist getting ready to take her back to surgery.

The Surgery took 2 hours and we were really excited to here that she extubated with out any problems right after surgery. GREAT NEWS!!!

BUT the Anesthesiologist had to pull her top two teeth (because they were loose) so there was no risk of her aspirating on them during surgery.

Here she is after Surgery, she looks so good

(even with missing teeth)

We were really releaved to hear that the Surgeons did not cut her Achilles Tendon, they eneded up reattaching it after all. They did release the tendons in the arch of her foot and ended up cutting the tendon that helps you flex your toes due to the fact that it was so tight it was part of the problem.

(So basically she can't pick up things with her toes off the floor now, but she could not before so no big deal.)

The picture above shows her casts wrapped in co ban, After putting the casts on they cut them to help with swelling, She ended up having so much drainage that they ended taking the casts off and putting on another set before we got to go home on Saturday.

After the Anesthetic finally wore off all she asked for was a wagon ride.

It took most of the day to finally get one up to the ICU. Due to our nurse having 2 kids to watch over so when she finally got in it she was really excited.

I love the smile on her face.

We now prepare to go back on the 28th of April where they will again take her into the OR, remove the casts, tighten the stitches on her foot, mold her feet for her AFO's and then recast them.

(they wanted her to be under the anesthetics for all of this and after watching them change the casting in the ICU on Saturday I am totally okay with that.)

Then I think we will finally be on a road to recovery after all of this.

Thanks for all your help and prayers, we truly are blessed with great friends and family.

Nic's Turns 10

2010-04-19T10:51:00.000-07:00

Nic celebrated his 10th birthday on April 10th.

His day started out with his BIG sister making him Breakfast in bed,

she wanted to get him something but was short on cash, so this is what she ended

up coming up with. I think it was really sweet, and he Loved it.

(pancakes, toast, green eggs and orange juice)

His Birthday present

I wrapped it multiple times

(such a nice Mom)

I think he is a little excited.

I love his the excitement on his face.

Nothing like a New Ipod Nano.

and a Itunes Card. and Cash.

(thanks Nana, and Grandpa and Judy).

HAPPY BIRTHDAY NIC!!!!

Pine Wood Derby

2010-03-26T17:57:00.001-07:00

Our Boy Scouts had their annual Pine Wood Derby Race this week.
I was not able to go due to the fact the Young Womans was the same night so I got
to stay home with Whitnee because it is still RSV season.
So no pictures were taken of the actual event, which made me sad.
Nate is the Cub Master so he was really busy trying to keep things on track (haha)
and moving. With 30 cars it was quite hectic.
.
It was really fun to watch Nate and Nic work on the car. Nic wanted his car
to look like Bumble Bee from Transformers (if only we could get it to transform)
and I think they did an awesome job making it look like that.

Nic's Car

Nic came home and said his car took 1st place
5 times and 2nd place once

Nic took 3rd place over all!

He was really excited.
GREAT JOB BUDDY WE ARE REALLY PROUD OF YOU!!!!!

TOOTH FAIRY

2010-03-26T10:53:00.000-07:00

A few months ago while getting dinner on the table I looked down at Whitnee and noticed that she was missing her front bottom tooth. As got looking in her mouth I discovered that the other 3 front teeth were loose too. I panicked, not knowing if this was related to her SMA or just a fluke thing. So I rushed her into the Dentist office to see what was going on.

He comely told me that her permanent teeth were coming in.
WHAT SHE IS ONLY 4!!! (she turned 4 in October) He said it was not uncommon and that she is only 1 1/2 years early. (great she got her moms teeth).

He sent us home telling us to watch the other 3 so she does not aspirate on them!
So last night I was checking her teeth making sure the really loose one was still there and that she did not swallow it. I noticed it was ready to come out, it was now or take the risk of her swallowing this one too.
So both Dad and I tried pulling on it for a bit, and finally a CUTE LITTLE TOOTH came out!

Whitnee showing off her new found whole.
(her cute little lisp is even more adorable now)

The TOOTH FAIRY came and she
got one quarter for each tooth.
(could not forget the one she swallowed)

Her face say's it all!!!!

Whitnee Gets Casts

2010-03-26T10:33:00.000-07:00

One of the down falls to Whitnee's awful hospital stay last summer is that
Whitnee has to have surgery on her feet again. UGH!!!
Shriners will be doing the surgery again, but this time her feet have gotten so bad
that they have to cast her a couple of times before surgery to get some stretching
on her feet. Which helps the surgery not take so long and so it won't be as painful of a recovery for Whitnee.

So being the consoling mother I am I did not get any photos of them casting her. It was really painful for her to get them on because they were stretching her feet while the plaster hardened.
So Dad and Mom got to hold her hands and console her!

Here she is afterwords, YEAH for the Chipmunks
that put a smile on her face and took her mind off her poor feet for a few minutes.
As you can see she picked NEON PINK cast and since her feet are so bad the casting had to go up to her thighs, with her knees bent.

It sure has made life interesting around here, bath time is a joke and changing her diaper is not fun either (hoping she will show more interest in potty training soon).
The casts have added probably 5 lbs to her weight, but it really feels like 50 lbs.
It is really awkward carrying her around from chair to chair etc... and my arms have scratches all over them from those blasted casts.
She will go back into Shriners on the 6th of April to have them removed, and more casts put on with yes more stretching. Then surgery on the 16th of April and then 6-8 weeks of recovery.
JUNE CAN NOT COME FAST ENOUGH!!!!!

Family Visit

2010-03-26T10:12:00.000-07:00

A few weeks ago we had a very nice visit with some of Nate's family.
Our niece had her first baby in February. They brought little
KAYDEN down so we could meet the little dude!
(not so little he weighed 9lbs at birth)

Here Whitnee is wanting to hold him,
he has his eyes on her too.

Kortnee loving Kayden.
(need to train my son on taking pictures, Kortnee
looks like she is giving someone the evil eye)

It was a very nice visit and fun to cuddle with the little
man and to send him back to his mommy for the diaper changes and
crying was nice too. :)

I SCREAM YOU SCREAM WE ALL SCREAM FOR ICE CREAM!!!

2010-03-26T09:29:00.000-07:00

So my last post I posted a link to my friends blog, who was having a Giveaway.
The prize was the Cuisinart Automatic Frozen-Yogurt-ice cream & Sorbet Maker.
I was surprised to get an email a few days later that

I WON!!!!!

Here is what I won, we can hardly wait to get it and try it out.
My husband can hardly wait for the Sorbet!!!
YUMMY!!!!!

Fun Snacks 4 Kids

2010-03-18T18:19:00.001-07:00

Check out my friends Blog. I think it has some great ideas and so fun pictures, you will love it!

Update

2010-02-25T12:19:00.000-08:00

I just posted new items in my shop go check it out.

Here are just a few snap shots of the kids over the last few months.
(Nic's update is coming soon).

Nic and Whit getting ready to go in the hot tub or as
we call it "HOTNESS"
(I think Nic's swim hat is just a little to tight, I love what it does to his eyes. LOL)

This Blanket and Doll were dontated to Whitnee by B4SMA .
She loves them both!

Kort and Michelle, leave them a lone for a while and
this is what happens, Girls and Makeup!

The kids at the Hopekids Movies, I think this one was
the TOOTHFAIRY.
(This is the ONLY place we have taken Whitnee in the past 7 months
because all the other kids there are high risk too.)

Our 12 Year Old!!

2010-02-06T13:02:00.000-08:00

So a few posts back I mentioned I would highlight the other kids, so I decided to post Kortnee first. She is such an amazing young woman! I truly believe she was sent down to our family for many reasons. One of them being my helper! She is such a strong person, and soooo mature for her age. She is probably one of the most responsible people I know and I am not just saying that because I am her mom. She has stepped up during the hardest times and just taken control of the situation. She decided on her own that she wanted to learn how to care for her sister.

She watched really close as I did treatments and read the direction that walked you through it, she soon mastered caring for her little sister all at the age of 10! She also has a lot of her father in her, she actually enjoys getting in front of people and performing in one way or another. For instance talent shows, piano recitals, etc...

She also has no problem stepping into a situation and standing up for people and defending them, she is quick to single out people when they start to single others out and when out and about shopping with the family, if people stare at her sister, she quickly will approach them and start talking to them, so they will stop staring. (although Whitnee is very fast to start talking to those staring too.)

Kortnee is VERY smart, she is so close to having straight A's, she has been working so hard for this, her goal a CELL PHONE, which is the reward for the grades. We are also enjoying this age, the personality that is forming is so much fun and I love that she feels comfortable talking to us about things going on in her life. I sure hope and pray that continues. We are so very proud of her and are honored to be her parents. What an amazing young woman she is!!!!

Kortnee's last hair cut, I love it!!!

First day of Jr. High 7th grade!!!

Here she is helping me paint my bedroom.
(now you have seen a sneak peak of the color, pictures coming soon)

I think she is such a great helper!!! we had my room done
in 2 days, she steps in and does what needs done.
We Love you Kortnee!!!

We Have The Link :)

2010-02-01T15:58:00.000-08:00

Here is the Story that BYU Daily News did on Whitnee and how she attends Preschool. She attends school with Achiever Preschool based out of Spanish Fork, Utah. you can check out their blog Here.

Whitnee's School Story

If you have any questions please don't hesitate to ask. Hope you enjoy.

BYU Daily News Filming

2010-01-28T11:21:00.000-08:00

Whitnee's interview went well this morning, Murphy's Law did take place and of course we had problems with the connection of SKYPE but we did manage to get the good stuff. If they decide to air the story it will air tomorrow Friday, January 29th at noon, on channel 11 KBYU.

If you do not get a chance to see it or if they don't air it, they will be sending me a copy and I will post it here on our blog, so keep checking back. It was fun for us to be apart of it and I hope it gets the idea out there of other options to help these little ones with disabilities attend preschool.

Thank you Logan and BYU Daily News.

Whitnee's Toileting System

2010-01-28T11:00:00.000-08:00

Whit got her new toilet chair yesterday, it is made by Rifton and so far has been wonderful, she has really loved sitting in it. She actually went on her second try, I think Mom was more excited then she was, I got some strange looks when I was praising her. Her reward for going was a bowl of ice cream with chocolate fudge topping. YUMMY!!!!!!!

What I did not realize when we ordered this chair was that it is also a shower chair, WOW was I excited to see that, my back won't be able to take much more lifting from the tub. Now to just remodel her bathroom in ripping out the tub and replacing it with a shower.

(If you are interested in more info on this chair go to www.rifton.com)

BYU Daily News

2010-01-27T08:26:00.000-08:00

I got a phone call about a week ago from the BYU Daily News to do a story on how Whitnee attends Preschool with the BEST preschool ever ACHIEVER PRESCHOOL in Spanish Fork. Apparently they read about it on our blog and found it really interesting. (he did say that he would give me a copy of the story so we will be able to post it here later).

They will be coming to film Whitnee in class tomorrow morning. I am really hoping that we have an AWESOME connection with SKPYE tomorrow. With my luck we won't and will have reschedule. LOL, no we have not had any problems lately.

So yesterday I took her to get her hair cut, which turned out way way cute, it totally fits her personality. THANK YOU PAM!!!!! (Kort got her hair styled way cute too). I will have to post a picture later, trying to get my office cleaned so no one see's how I really function. LOL (no it amazes me how a 7 week stay in the hospital throws everything off, including filing papers and how fast piles of paper can stack up, I am almost caught up.)

Our 4 year old

2010-01-13T18:26:00.000-08:00

Today Whitnee woke up asking to get out of bed. Which usually does not happen till her treatment is done, which consists of getting her Nebulized treatment of Albuterol, cough assist and suction, along with drinking her Nutren Jr. So I pulled her out of bed and took her into lay down next to daddy. All you could hear was giggling and mommy I sleepen, giggle giggle.

We then sat her up to see how long we could get her to sit on the bed and to our surprise she made it 3 minutes (I think the bed is way easier then then floor) Way exciting. She then turned to her daddy and said call Nic, and handed him a fake phone, he proceeds to talk with Nic and then hands her the phone and there was more giggling.

We then took her into start her treatment, where we put on Barbie Rapunzel (Barbie her FAVORITE thing to watch), and I handed her her barbie purse full of barbie make up, cell phone, barbie money and anything else she could stuff into it. She then picked up her cell phone and called Nic (at school) and said "Nic a hamburger, okay" and then hung up. It was so funny to watch her asking her BIG bro to bring her a hamburger. LOL

She then pulled out her watch and put it on, then as we were doing cough assist preceeded to say "mom it 3,4. mom it 3,5 mom is it 3,5,6 I thought it was so funny that she was telling me the time. She had Barb here today (her P.T.) at the beginning of the year we made goal with her a few of them being able to sit for 5 min unassisted, to roll 5 times to each side by her self, to be able to lay on her tummy and lift her head and to be able to move around in her pony (walker).

Well to our surprise today Whitnee sat for 4 min 20 seconds on the floor playing and picking up toys. She then rolled with some help to both sides and did some tummy time with OUT crying. :) She then did some moving in her pony pushing backwards. It is so fun to watch her do all of these things. She surprises me almost daily, I honestly did not know if she would ever be able to do these things again or ever. But I believed with all my heart that it was possible, she is such a determined little angel and I am so grateful that she is my daughter, she gives me such strength and helps me to see that ANYTHING AND EVERYTHING IS POSSIBLE IF YOU JUST APPLY YOUR SELF!!!!!!

(the picture above is from this Christmas, she was given this darling TuTu from a dear friend of ours and thinks it is so pretty. Her big sis wishes she had one too!! :) )

( I will also try to spotlight each one of my kids in the next couple of weeks with all their fun things going on)

2009-12-21T08:58:00.000-08:00

I thought this year I would quickly post a little recap of our year.

Kortnee (12) advanced into the Young Woman's program this year, her very first activity was girls camp, they were gone for 4-5 days (sorry I can't remember). She had so much fun with all the girls and leaders. She is now in 7th grade and I think she enjoys it but tries not to let on about it. She is working really REALLY hard for straight A's the reward is a new cell phone, I won't be surprised if she reaches her goal! She is such a smarty!!! She is also the world BEST babysitter and does do babysitting here and there around the ward. She is a great deal of help around the house and with Whitnee (she can do all her treatments and knows how to work every machine Whitnee uses). Kortnee is such an amazing young lady and WE are so very proud of her.

Nic (9) is now in 4th grade and loving it, he was really concerned he would not like his new teacher this year (which I must say after having Mr. Goodman, is hard to compete). But he does like her and is doing very well, he informed me the other day he is known as the class clown (great). He is now a Bear in the scouting program and loves it! He also is my athlete, this year he has become our star football player (at school I should say). His father can not wait for football season to start next year so we can get Nic signed up. (missed it this year due the our hospital stay). Dad says he has a great throwing arm. Nic is also a great deal of help around the home, he is also learning how to use and assist with Whitnee and her machines. He is growing up so fast and into a very handsome young man, (mini Nate)! We are so very proud of him and his hard work.

Whitnee (4) has been busy this year! She spent 7 weeks in the ICU with croup this summer (literally our whole summer break). With a few surgeries and scares, she pulled though it and is doing amazing, she has surprised her preschool teachers, P.T. and O.T. with how strong she had gotten, she did not lose any ground with her strength during that stay THANK GOODNESS!!!
She made her wish with Make-A-Wish during her stay in the hospital and received it this November. Her wish was a HOT TUB and she is in it all the time and loves it. She has made some great progress with her P.T. she is now sitting on her own for a minute and a half and can roll to her right side on her own. YEAH!!!!! She now stands in the pony and can push her self backward :) and we are working on pushing forward (hoping to get her walking). Our biggest surprise with her this year is that she has made great progress with eating by mouth, she is now eating pretty much what we eat. (before she was diagnoses she could eat mac n cheese& chicken nuggets-but very little, she then lost most of the ability to swallow things like that). We are really liking the fact that we all can eat together as a family. Whitnee is also attending preschool over Skype with Achiever Preschool (the best school around) and has learned so much. we are so grateful for her progress and determination to do the thing she sets her mind too. What a great example of not letting your limitations stop you from achieving what you want to. We are very proud of her too.

Nate (??) is really busy with all the things he has going on, Sundance Canyon (our boys home) is doing well, and he stays busy doing the marketing for them, he also works on his ATV site www.atvtrailreviews.com quite a bit and was quite disappointed he did not get in as many trips as he would of liked this year, but next year is a new year and hopes to get out there more on the 4 wheeler. He is still with Prosper, coaching, so as you can see very busy. He is the ward Cub Master and does a really good job too. (Nic loves it too). He also works really hard around the house too, I am so blessed to have such a great and supportive husband!

Anna (??) staying busy with the kids, Whitnee really keeps me busy with therapy, school, pool therapy, treatments, and just being 4. Keeping up with the other two has been a blast, I am loving the cute personalities that are forming. I have had to accept that fact that my house does not have to look or be perfect, because none of us are perfect and I am okay with living in a "lived in home" look! I have started my own business www. accentcottage.etsy.com and am loving it! I also am trying to decorate my home, and it is going a lot slower then planned but that is okay, the longer it takes the more ideas I get and want to do. But I have discovered how much I love decorating, even if it is one room at a time.

So there you have it, the Stoddard's quick year in review. We hope all of you have a VERY MERRY CHRISTMAS and a HAPPY NEW YEAR!!! and hope that CHRIST'S spirit will be with you this time of year!

My New Site

2009-12-16T14:28:00.000-08:00

I finally did it, check out my new site and tassels, I think they turned out really cute!

http://www.etsy.com/shop/accentcottage

All the proceeds go to Whits foundation in helping her have a more independent life. Hope you enjoy it!

Merry Christmas everyone!

Our Christmas Tree

2009-11-29T12:51:00.001-08:00

Putting up our Christmas tree this year was so much fun, last year my husband and I hit the clearance sales after Christmas, we managed to purchase a new prelit tree and some decorations and a LOT of ribbon. We pulled the NEW tree out of the box and started putting it together, both my husband and I said our old tree was much easier to put together but it was a whole lot smaller then this new one, and were really excited to have such a nice tree.

My daughter and I then proceeded to decorate the tree, as we finished I kept adding things here and there but it just did not feel done to me, so I thought well maybe it is because I don't have the topper on, so I called my wonderful neighbor to help me in making a bow for the top of my tree, since I had no idea how to make a large bow, this to my surprise was a whole lot easier then expected. I took everything I had and headed over to her house, when I go there she had a cup of hot chocolate waiting for me and some cookies. What a wonderful treat and so what I needed. After our fun little visit, she then proceeded to show me how to make my bow! I then told her how I was decorating my tree, so she offered to come over and take a look at a few things I had mentioned to her.
Well she was great, she took the ribbon on my tree and said "this is how you put ribbon on your tree"! WOW I could not believe the difference it made. I feel like I bought a decorated tree straight from Tia Pan, it is so beautiful!!!

I did spend some money this year on it I think 7 dollars at the dollar store on red and gold balls and some ribbon, bet you can't guess what I bought just looking at my tree. I also bought fabric for my tree skirt. All the decoration I had and have used over the years.

(These pictures do not do it any justice)

I wish I had better pictures to show you how beautiful it turned out.
THANK YOU LAURIE

Whit's Thanksgiving Feast

2009-11-24T09:24:00.001-08:00

Today was Whitnee's First Thanksgiving Feast with her preschool class. The amazing teachers go all out for the kids and do a full feast with turkey, stuffing, potatoes, fruit salad and a roll. The kids help make the meal too, they help peal, cut and mash the potatoes along with the fruit salad.

The first thing Whitnee's group did was make her Indian hat, I did not realize I had not taken pictures of her doing this, mostly because I was manning the "zizzors" and we did not want to cut any one or thing.

I think her hat turned out way cute don't you!

The next group she went to was to make necklaces out of colored noodles
they accidentally forgot to send me some so I pulled out the beading blocks
which worked just as good.

Here she is sticking out her tongue (a new thing when I say "smile")
while she is beading.

I finally caught the smile.

The next group the kids got to help make the fruit salad.
So here is Whitnee cutting apples and banana's for the feast.

Since we are not there at the preschool for the feast she
ate the fruit for her snack today.
We are very grateful she has made enough progress with her
swallow that she could eat these.

What a fun way to celebrate Thanksgiving, now I know how she can help get
ready for our Thanksgiving feast :)

HAPPY THANKSGIVING EVERYONE!
(we will post pictures of our family feast later.)

HOT TUB part II

2009-11-23T15:34:00.000-08:00

We were so excited to get Whitnee into her new HOT TUB, if I remember it was about 45 degrees outside in most of these pictures. She loved every minute. She has been it at least 4 times this past week, we are trying to take advantage of the warmer weather. So between preschool 3 times a week, and her PT coming I try to get her in when we can.

(sorry I don't have more of us in the tub or as whitnee calls it "the baf" once we are in there, there is no getting out unless you are done. It's COOOOOOLD out of that water, so I will try to post more later)

Here she is standing with her Dads help.

I Love the Smile on her face here, even with
me stretching her feet.

Kort and Nic playing.

Here is the beautiful quilt and pillow case her wish granters
gave her on our final get together/hot tub party.

Here is the cake they brought for Whitnee it says

WISHES DO COME TRUE WHITNEE MAW (make a wish)

Whitnee next to her cake-she kept telling them
thank you for the cake.

Nic and Carri eating root beer floats and cake.

Hugh and Kort eating root beer floats and cake.

Whitnee loving her cake and root beer float.

While we were visiting we had a wonderful surprise!!!
(as you could see in the other photo Santa was one of
her granters)

Santa Surprised Whitnee!!!!!!!

(she does not get to go to the mall to sit on his lap
due to being so high risk so he came to see her)

All the kids with Santa

Kort with Santa

Nic with Santa

Whitnee snuggling with Santa

Whitnee's Wish Granters +Santa

I could not pass up the chance to sit on his lap either.

We had a lot of fun with them, they sure did make this experience wonderful and
they were a joy to be around, we cannot put in to words our appreciation for them.

THANK YOU SO MUCH MAKE A WISH!!!!!!

The HOT TUB

2009-11-12T12:37:00.001-08:00

Whitnee's Make A Wish arrived late one evening last week.
She was so excited, she kept asking to go swim.

Here they are delivering the Hot Tub, they were trying
to figure out where the controll's were located.

This was our first brief peek at it.

The next morning Nate helped take the packing cover off
so we could actually see it.

It seats 7 people and yes we have already assigned seats
unfortunately most of us are 5 feet and under so we have to share
the seats that sit higher in the water.
Daddy see's this as a bonus, he gets 5 seats LOL

Here is Whitnee siting in her Hot Tub
Can you see the excitement in her face.
We just love it.

She would not let us take her out, she cried and cried
when we had to take her out.

The Electrician came today and she is watching their every move
and keeps asking them when they come in the house if it has water yet.

Here they are starting the process of hooking up the power.

Whitnee's Hot Tub!!

Not sure when they will be coming over to fill it up and deliver
the cover and steps so yes we have another long weekend with a 4 year old
asking about the water.

We are so excited that she got to make her wish and that she is so excited to
get in it. Thank you Make A Wish for this wonderful gift.
More pictures to follow soon.

Good Times

2009-10-20T17:04:00.000-07:00

When I was little my parents took a picture of my BIG brother watching t.v while I was combing and putting berets in his hair. Well this was a classic. Kortnee needed to comb out the wig and needed a place to put it so she could comb it better.
Her little bro just happened to be sitting right next to her. I love his expression I think it says it all.

Our Baby Turns 4

2009-10-20T16:06:00.000-07:00

We celebrated another birthday with our sweet Whitnee, every birthday we get to spend with her is a true blessing and a miracle especially after the summer we had this year. We hope and pray for many many more!

HAPPY BIRTHDAY WHITNEE!
WE LOVE YOU!!!!!!

Here we are singing HAPPY BIRTHDAY to her
and she is giggling with her head down.

What a sweet face- YEAH I'M 4

The most wanted gift of course
A Barbie Movie

She adores Tinker Bell

Opening more Tinker Bell Stuff from Nana

She loves her Tinker Bell bracelet from Nana

Here she is opening books from Grandpa and Grandma Judy.

She had a great birthday, thanks for all the birthday wishes!

A Witches Night Out

2009-10-20T14:50:00.000-07:00

For those of you who know me know that I do not like to draw ANY attention to myself, I am fine to be in the crowd and or in the back. So this was a very hard and a new experience for me. A night out with my friends at Gardner Village at there Witches Night Out.

Thanks to Angela she had the perfect Costume to borrow!

This is Sheri and I
(you owe me one :))

All of us,
Sheri, Me, Angela and Amy (I think)

Join the Fight to END SMA!

2009-09-14T11:56:00.000-07:00

This is the disorder our beautiful daughter has, I lost 2 cousins to this horrible disorder. Would you please take a moment and watch this short movie and then please sign the petition, and give our daughter the opportunity to live a better life. Thank You from the bottom our hearts.

2009-09-09T07:41:00.000-07:00

I thought I would post what we have been up to in the last 7 weeks of being home. Other then Whitnee catching everything like pink eye, ear infection and now all of kids have sinus infections, we are all doing well. School is in full swing and they are starting to bring home the bugs (the sinus infection) we are really hoping this is not a precursor to the up coming season a head of us. Unless they are getting it all out of their system before it gets to bad, which I can handle.

Nate actually got to take Nic 4 Wheeling this past weekend and they had a blast, Nic got to drive his own 4 wheeler this time and did really well, I do have footage but will have to post it later.

The Squirrel

So I had a gas leak in my car, that was causing a really bad smell of gasoline to travel up inside the car. So Nate dropped the gas tank and this is what almost fell in his face. I am not sure how it got up there since we don't have Squirrels at my house, my guess is that it was from PCMC but who knows. It must have gotten stuck and tried to bite it's way out and drowned. SAD and YUCKY!

Hogle Zoo

This was our "staycation" this year. It was a perfect day, cloudy with a chance of rain, cool and hardly anyone at the zoo! We loved this visit, it was way cool!

The Gorilla,
Nic took this picture of his favorite animal.

The Penguins
Whitnee's favorite animal,
Kort's were the reptiles but those pictures were on her camera. (oops)

Kort and Nic on the Carousel

Mom and Whit
(she threw a fit when it stopped- I on the other hand
was very happy for it to stop)

Mom trying not to PUKE
(I get motion sickness)

The AWESOME Bird Show

A Falcon (I think)

A Fusa from Madagascar, they eat Lemurs and sleep a lot

Our Kiddo's

This is how we shop
I love having a little helper.

Whitnee's Sleep Study

Whitnee getting her sleep study done at PCMC

Here she is getting all the probes put on her head

all finished before bed.

First Day of School
Kortnee 12 yrs

Nic 9 yrs

Man they grow up way to fast! I wish I had a rewind button
sometimes. I am soooo proud of them and love each one of them sooooo much.

Home again Home again.

2009-07-25T12:36:00.000-07:00

We finally made it home! 46 days in the PICU is way to long for anyone. I did quickly learn that we were by no means the longest one there either, there were many heart babies there who had been there much longer so we were grateful to come home.

Whitnee was not okay with everyone running through
the sprinklers with out her so here is Bro and Sis
helping her run through the sprinklers.
As she put it "I wet, I cold"

The day before we came home (I think)
finger painting everything as you can see.

I can count on one hand how many times whitnee
has done tummy time in her life. This surprising enough
is the second time in the hospital and the first time not
complaining. (Thank you Barbie 12 dancing princesses)

Whitnee doing her breathing treatments, very happy
to have her mask off.

Not much to do in a hospital when you are
visiting, so Nic is listening to his MP3 Player.

Kortnee finger painting with Whitnee

The girls finger painting.

Whitnee fell asleep coloring her picture.

Whitnee right after extubation (removing the
the breathing tube). Not to happy about the
breathing treatment she had to do.

This Is Jennifer one of our favorite nurses, she also
became a part of our family while we were there
The last time we saw her as she was leaving her shift for the
day, Whitnee looked at her and said "You Stay"
It just broke her heart, it was way cute.

We are so glad to be home, Whitnee is doing really well on all her treatments, which we are doing every 3 hours. Yes we are all sick of doing them but we have about 20 more days to go. Kortnee and Nic sure have been a great deal of help, they now do her CPT and Cough Assist and they are really good at entertaining her while during the treatments.

WE ARE SO THANKFUL FOR ALL OUR FRIENDS AND FAMILY WHO CAME TO VISIT, CALLED, HELP WITH MEALS, FOR THE SERVICE DONE, AND FOR ALL THE PRAYERS GIVEN IN OUR BEHALF. SHE RECOVERED AND HAS DONE SO WELL BECAUSE OF IT.
THANK YOU SO MUCH.

27 Days and Counting

2009-06-27T14:21:00.001-07:00

We Started out our summer in the PICU up at Primary Childrens Hospital. Whitnee ended up with an awful virus called the Parainfluenza3 (croup) basically the worst kind you can get, and is compared to RSV. With her SMA it really hit her lungs hard. She has been intubated 2x this stay and so far has had one surgery.

Here she is on our first day in the ICU.

This is after her 2nd intubation
with her most constant and favorite Nures
Jodie.

This is bath time, she is getting her hair washed
and decided to put her hand in the water to splash,
to me it looks like she is at the spa. lol

They finally gave her permission to sit in
"EVA" her wheelchair, as you can tell she
is very happy about that.

This is Pet Therapy that comes to visit her, it
helps to boost her spirit. This is one of the dogs
his name is Elliot

This is Music Therapy that comes twice
a week and boy does she love it.

She loves to dance while they sing to her.

They are so good with her.

Family visit
(Kort is at girls camp)

This was way fun, they asked Whitnee
if she and her brother Nic (kort was at camp)
would paint a ceiling tile.
So here they are painting.

Finished project now hangs in the PICU
outside her room.
They did a great job.

We are taking it day by day waiting for her lung to pop open,
it has been and is a very slow process.
Thanks to everyone for all your support, prayers and visits we really
do appreciate it!!!

K's Spa Party

2009-06-27T14:05:00.000-07:00

Kortnee turned 12 this year which was so much fun, her Aunt "Z" basically threw it for her this year since we were in the hospital with Whitnee.
So they had a Spa Party, Manicures and Pedicures, and then they did each others hair and
watched Penelope (way cute movie).

Here is the gang!

We had our family Party at the hospital with Whitnee,
Roller Blades, make up :) and Ears Pearced
were the gifts this year.

To top off the Birthday week for her she got to go
to girls camp too, so in all this will be a birthday she will never forget.

We Love you Sis,
Happy Birthday!!!

Catch Up!

2009-03-23T13:53:00.001-07:00

Ok I was told today by a friend that I am doing an awful job at updating my blog. Which I have to agree. I was although glad to know that at least one person is viewing it! I will say this though Face Book has not helped in this matter at all.

Nothing is new at our house which is fantastic news!!! We have just had a long winter cooped up for the last 5 months. Spring can not come fast enough.

Here are a few photos over the last few months, to let you see what has gone on in our lives.

This is the blanket I worked on this winter.

Kort holding her new cousin Justin.

wishing she lived closer so she could babysit.

Isn't she Beautiful!!!

Nic, Kort and Justin

Nic earned his BobCat :)

Nic putting on my Pin.

Hugs all around. We are so proud of you Nic.

Great Job.

Whit at pool therapy.

Whit standing at pool therapy.

Due to pool therapy Whit now stands for 1 hour

in her stander. So we are baking all the

time to help pass the time.

Here she is making cookies

Anyone for a cookie.

(she does not like them they are too sweet)

She a BIG help in the kitchen!

Well that is our life at a quick glance.

We are all doing well and staying healthy.

2008-12-17T16:30:00.000-08:00

We were such slackers this year, we just could not find the time to get our pictures taken do to colds and busy schedules. We finally found an afternoon where we were able to get the kids picture taken. Family ones will have to wait till spring I guess. Great job hon I think they turned out Great!

Kortnee, Nic and Whitnee

Kort, Nic and Whit

Kortnee (11)

Nic (8)

Whitnee (3)

Fox 13 Cool School's

2008-12-17T15:33:00.000-08:00

Our Elementary School was selected for Cool Schools with Fox 13. It was a lot of fun for the kids.
K and N were in two segments that they broad casted. School Choir and Speed Stacking. (I will apologize now for the picture quality I forgot the camera so my camera phone had to do).

K and N with Big Budah

N Speed Stacking

K Speed Stacking

Live Interview with Choir Teacher.

The kids had a blast and could hardly wait to get home to watch it.

Pictures From This Summer and Fall!

2008-12-08T10:10:00.000-08:00

Whitnee started pool therapy last week and wow it was so exciting. To finally see your child do something for the first time in there life is an amazing experience. It is even more exciting when they recognize it too.

Whitnee lifting her legs out of the water all by herself.

Whitnee kicking her legs and arms (catching the alligator).

Whitnee Swimming :)

Whitnee standing :)

The SMA clinic at Primary Children's Medical Center had an event with the Real Soccer Team. Real is trying to help get the word out about SMA and we sure appreciate their help!

Here are pictures from that event.

Whitnee and Dr. Kathy Swoboda who is Whitnee's Specialist at PCMC. Dr. Kathy is our Angel. I believe Dr. Kathy is one of the reasons Whitnee is still alive today, we love her so much!

Kortnee and Nic playing soccer with one of the Real players.

Nic one on one.

Kortnee and Nic with a few of the players.

Whitnee with a few of the players.

Group shot of everyone.

Whitnee with Aubrey her OT from Kids on the Move. Today was graduation day! She is now in the School District for all her OT and PT help a long with preschool.

Whitnee with Gary her OT/PT

Sad to not have their help any more.

First day of School pictures. Kortnee 6th grade :( I can't believe she is that old. Nic 3rd grade They grow up way to fast!!!

Nic got his tonsils out in August, everything went well, here are just a few pictures of that day.

Before Surgery (notice the smile)

Looks like we had a busy summer and fall. More Pictues to come as I organize my computer and find them all.

Thank to everyone and their support and prayers it really makes a difference.

Update

2008-11-21T19:43:00.000-08:00

I guess it has been a while since my last post. A lot has happened too. I took Whitnee to Shriner's in October for a check up on her feet from surgery in September. They removed her casts and everything looked great. I then talked with them about some concerns I had about her hips. Anyways long story short, yes she does have major hip problems. And at the appointment I was informed that there was nothing that could be done other then positioning her better. So we are in the process of getting a better manual wheelchair to help in that situation.

I left Shriner's rather upset and frustrated. Isn't that what Shriner's hospital is there for to help children like Whitnee with problems like this. To me "there is nothing we can do" is a very poor answer and I was not about to accept it.

So I contacted Whitnee's specialist and told her the situation, she referred me to a rehab specialist at Primary Children's Hospital where the specialist agreed with me, we can do something. So she put Whitnee in a knee immobilizer, and gave me some exercises to do with her. I then asked about Pool Therapy, which she said Whitnee would benifit a great deal from and sent me to another PT for an evaluation.

So Whitnee starts pool therapy on December 4th. I am so excited, I have been looking for pool therapy for 2 years now and about feel over when the specialist told me where to go. The therapist is also looking into foundations to see if we can get some assistance in purchasing an enclosed hot tub so she can continue her therapy at home.

Whitnee is doing great with the knee immobilizer and the stretching. Her PT who comes to the house is putting together a exercise program for her that we will start after Thanksgiving.

Halloween was so nice, we were able to go trick or treating as a family this year it was so warm for the trunk or treat and only a little rain on Halloween but no the less it was great! I will post pictures when Nate gets back from his trip to Moab (4 wheeling).

Whitnee came down with a cold on Tuesday of this week and managed to kick it rather fast. She is still coughing but not in bed and running a high fever anymore. The nice thing out of the cold was we needed to transport her to the Dr. So Home health dropped off portable oxygen tanks for us. So the next time I have to take her to the hospital when she is sick I might be able to do it with out and ambulance.

Report cards came home today!!!! I am so PROUD of my children they work so hard to keep there grades up. Good work Kortnee and Nic. Kortnee managed to make student council this year and is working really hard with that and all her school work. She is so amazing and smart.
And Nic was just excited to finally bring home a report card that we all understood. Letter grades not the stupid ones they get from kindergarten to 2nd grade. They are both in school choir this year too and it is so fun to hear them sing there songs around the home and get excited to go each week (Nic more then Kortnee-she was in it last year so the excitement is not like it was last year).

Well other then that, I am sorry there aren't any pictures this time but I will post them when Nate gets back.

Thanks for all your prayers and support. Happy Thanksgiving Everyone!!!!!

Happy Birthday Whitnee!!!!!

2008-10-17T20:31:00.001-07:00

We celebrated Whitnee's 3rd Birthday today:) It is hard to believe that she is that old. With her SMA it is yet another mile stone and we are so greatful we have had the chance to celebrate such a fun day with her. We hope and pray that we have many more to come!

Whitnee opening her presents

I think she was Surprised

Daddy picked out the balloons.

Got Ya Dad!!!

Nothing says party like Silly String

Whitnee getting chased

Mom starting the fight and winning :)

Happy Birthday Whitnee

We love you!

Surgery Pictures!

2008-10-03T11:17:00.000-07:00

Okay, I finally found time to update the blog! Here are the pictures I promised. Here Nate is trying to keep Whitnee intertained before surgery. They just gave her some sleepy meds so we were waiting for them to kick in.

This is the hardest walk-on our way to surgery

the medicine kicked in and a fun wagon ride to surgery

not sure she remembers this.

Whitnee after surgery TRYING to sleep.

not possible in a hospital!

Whitnee's purple casts, she picked out!

She is doing really well, we got 10 min in the stander today, slowly we will get up to an hour!

SMA Awareness Night With Real Soccer!

2008-10-03T11:02:00.004-07:00

Nat was able to get us tickets to a soccer game against the Chivas US Team. Nate and the Kids had a blast even though Real Lost. Whitnee and I were unable to attend due to Whitnee's surgery the day before. Here are a few pictures from the game.

Thanks again Nat, we had a lot of fun!!!

Dinner With Nat Borchers Real Soccer!!

2008-10-03T10:41:00.000-07:00

We got an e-mail back in August from Abby Smart (Whitnee's Nurse at Primary Children's) inviting us to a dinner being put on by the Real Soccer Team. Nat Borchers a Defender for Real Soccer has a God Son who was in town and he wanted to have dinner to help with getting the word out about SMA. It was a wonderful dinner and lots of fun.

Here is Whitnee eating with Seth and ???(sorry I am drawing a blank)

all 3 of them have type II-It was very interesting to see

how differently it affects each child. Both Boys are stronger

then Whitnee. Neither one are on machines.

Here is Nate, Kortnee, Nic, Whitnee & Nat

Here are all the kids who were able to attend.

Nat was so kind he had a big bag of Real Soccer

stuff for each kid. (Kortnee and Nic thought that

was the coolest thing ever. Then even got his

autograph.)

Thanks Nat for a great night out, we all had fun! We look forward to many more events!

4th of the 4th

2008-10-03T10:23:00.000-07:00

Dang it I got Tagged! Okay her it goes.

Step 1: Go to your picture file.
Step 2: Open the 4th file.
Step 3: Now Open the 4th picture and post it!
Step 4: Tag 4 people to do the same ;)

This is Daisy our dog! Isn't she pretty! I think this is when we first got her 5 years ago WOW!!!
I can 't believe how skinny she is.
Okay I tag, Taci, Lecia, Jody R. & Jesse! (Lets see how many people actually read my blog)!

Surgery Success

2008-09-20T17:45:00.000-07:00

Whitnee's Surgery went really well yesterday, it went better then they expected. She intubated and extubated with no problem :) Which is great for a child with SMA. She picked purple casts and she is constantly asking to take them off. (it will be a long 6 weeks). Her Dr. said she can start standing next week or as soon as she is feeling better, which surprised us but were really excited to here we could start standing rather then waiting 6 weeks.

I have kept her pretty drugged up with meds for the pain. But other then that she is doing great! We were able to come home yesterday around 8 p.m. which really excited us to not have to spend the night. That and you never sleep in the hospital, they are always touching, poking, etc... you the whole time you are there. I thought that sleep was one of the best things to help in recovering from sickness, surgery, etc... but I don't think hospitals believe that.

When Whitnee got home she slept till 8:00 this morning, and boy did she need it. She drove Wally (her wheelchair) around this afternoon for a bit which did perk her up some. Thanks for all of your support and e-mails we sure appreciate it. I will post pictures later.

Surgery Scheduled

2008-09-16T15:14:00.000-07:00

Back in March I believe, I took Whitnee up to Shriner's for her 6 month visit. As we talked with the Dr. we were informed that Whitnee would need both her Achilles Tendons stretched. We have tried to prolong this procedure for as long as we can do to the recovery time and even the risk we take in intubating Whitnee again. We even contacted Dr. Swoboda hoping she would discourage it. But she was in support of doing it asap, so we can get Whitnee standing in her stander again for an hour. They told me that it would be this summer, we were thinking early summer.

I actually got the phone call today informing us that Friday Whitnee is scheduled for surgery. We will have a 3 day stay in the PICU and from what I am told she will be casted from just below the knee down to her toes for 6 weeks :( From then on I don't know what will happen.

So we ask that you remember her in your prayers that her surgery will go well with no complications (breathing etc....) and that her recovery will go well too.

Thanks for all your support. I will up date the blog on her progress soon.

Trying to catch up

2008-09-05T16:41:00.000-07:00

We finally got to go to the cabin this year as a family! Whitnee's health was great so we thought we would try it. It was a success. We went up while Jesse was here in July (yes I am finally posting pictures) It was a nice visit, lots of fun!!!

Kortnee driving the 4 wheeler!

Whitnee driving the 4 wheeler (huge progress with her arms thank you PT)

Nic and Kaylen exploring.

Kaylen, Julia and Jayson on the 4 wheeler

(we could not get Jayson off of it)

My Family! I think the last time we had a family photo was about 6 years ago, before Dad passed away I wish we would of had time to do it professionally, oh well next time. I sure loved being with everyone. And being up in the mountains. (Mindi and Jill had to work we sure missed them too.) The Cousins what a cute bunch of kids!

Yet Another Hospital Stay!

2008-08-18T14:54:00.001-07:00

Well, I was hoping my next post to be full of fun pictures from this summer that I have not had a chance to post yet. But sorry that is not the case.

Whitnee has had this allergy problem this summer (who hasn't) she can't cough like most of us and we have to use a cough assist machine to help her cough. Well the drainage she has had her pour body could not keep up with. So I continued to help her best I could but her oxygen levels dropped and I could not get them to come back up. So 911 is a number I feel I call way to much. It is pretty sad that when they walk in you know some of them by name, but the only way to transport Whitnee when she is sick is by ambulance so we love them a great deal. And they have been wonderful to drive her directly to Primary Children's rather then to the closest hospital.

So Wednesday we ended up at Primaries with the prognosis respiratory distress, collapsed lower left lung. We feel that is was a mucus plug. She did very well there, barking orders to the nurses and Dr.'s and of course using her manors too. Please and Thank you. (everyone thought that was cute). They never could figure out why she had a low grade fever. So they ran every test possible which traumatized pour Whitnee and really up set her parents. All tests came back normal. So on Saturday they felt that she was in a good spot to send her home they said where mom is so hands on they felt comfortable sending her home. (mom gets really over whelmed when comments like that happen and more stress added) They did not want her sticking around to long so she would not pick up anything there at the hospital-which we are very grateful for.

So I took Whitnee in today to see her Dr. Who looked at me and said as he looked in his ear. How were they treating her ear infection (I was upset about that after all the testing we did up at primaries) The one thing they never checked was her ears. So I am glad we had a follow up today it is nice to know what else we are fighting. He said to keep up the hard work and to check back if her fever does not go away.

We are now home and doing better, still having to do cpt and cough assist every 4 hours and everything else on top of that but it is nice to be home!!! Hopefully she will be able to get over this and we can enjoy what nice weather we have left. We are very hopeful this is not a sign of the seasons to come.

While we were at the hospital we met two other families with SMA type 1. We sure enjoyed talking and getting to know the Riggs family and want them to know they are in our prayers and hope that things continue to go well with their little one.

We have learned that when ever we are feeling sorry for ourselves it takes one hospital stay to realize we have it good, it could be a lot worse, and would not trade for the world!

Life Choice's

2008-07-21T21:11:00.000-07:00

Nate sent me this link today and we both felt like we would like to share it on our blog. How exciting to be celebrating such an amazing day! We understand and relate in a small way of that decision of what would be best for your child, we are grateful that there are options out there. We celebrate with you!!!

http://www.chicagotribune.com/news/local/chi-malachi_25_jun25,0,7097487.story

Memory Lane

2008-07-11T13:39:00.001-07:00

So one of my high school classmates had this idea and I loved it so here we go.

1. As a comment on my blog, leave a memory that you and I had together. It doesn't matter if you knew me a little or a lot, anything you remember, good or bad but be nice please! ;)

2. Next, re-post these instructions on your blog. If you don't want to play on your blog, or if you don't have a blog, I'll leave my memory of you in my comments.

3.If you also have a memory of my children or husband please leave your memory of them too.

Have fun;)

The Bean Museum

2008-07-08T09:45:00.000-07:00

Last week I took the kids down to the Bean Museum at BYU. It was a great day to get out of the house and do something other then sit around. Whitnee did much better with the stuffed animals then the live ones.

I thought this was really neat, it is made up of many different kinds of butterflies to make one really big one.

As we turned the corner and saw this Ostrich, Whitnee said "chicken" it was funny.

WOW what a really BIG bear.

And I love this shot, Nic is telling Whitnee to smile at the camera, and the look she is giving him if priceless, you can tell she loves her big brother.

It was a lot of fun and I think we will go back soon.

Petting Zoo!!!

2008-07-08T08:08:00.001-07:00

We took the kids to Thanksgiving Points Petting Zoo last month, we were planning on meeting Kids on the Move there for the activity that week taking place of swimming lessons for Whitnee. So when we got there they informed me we missed it by 2 days, (story of my life). So we decided to go through any ways. I think it was a lot better to, not so many kids there.

Kortnee riding a horse

Nic riding a horse.
(we actually had Whitnee on one but she could not keep her head up so we pulled her off)

So we started out with the sheep, Whitnee loved it until it spoke to her.

Baa Baa Baa, if Whitnee could have climbed out of her chair and over the back she would have.

this was her respose to the sheep :( it took us a bit to calm her down, the goats next to the sheep were our saving grace only because they had little babies born the day before and they were so cute and tiny Whitnee loved that.

The rest of the visit she kept her distance and told us no a lot. The favorites that night were the pigs (sleeping) the bunnies (sleeping) and the little baby goats.

Here we are looking at the baby goats.

All in all it was an okay visit but one Whitnee would probably be okay never to see again.

(which is not okay so we will be going back.)

Whit's Swimming Class

2008-06-30T11:51:00.000-07:00

Kids on the Move (early intervention) offered a swimming class this year that they felt Whitnee would benefit from so today was the first warm day we could go. She loved every minute of it, here she is singing the wheels on the bus with a big ring that she had to use her arms to turn like the steering wheel ( she is also telling me not to help, oh 2 year old's).

Due to head control she wears her life jacket in the water and loves it.

Here is a better shot of the wheels on the bus.

K-she looks really funny here but it was the 15 min pool check which she hated

and felt like the longest 15 min wait ever, considering she screamed the whole time.

She loves being in the water! We are loving the class so far.

Kort's 11th Birthday

2008-06-30T11:36:00.000-07:00

It is hard to believe Kortnee is 11 years old!!! I remember being that old and I am having a hard time with the thought of having an 11 year old daughter. Oh well, they have to grow up sometime.

So a few years ago Nate and I decided that every other year they could have birthday parties with friends and the off years would be family parties and such. So this year was an off year. So we asked Kortnee what she wanted to do for her birthday and she decided to have her room done.

So we took her to the store to pick out her colors

Pink, Lime Green and Tangerine Orange!

She wanted one color on each wall and then striped

It was a new challenge and experience but

it turned out way cute!

Here is her pink wall.

The green wall.

And the orange wall.

We were very pleased with how it turned out, even Nate liked it.

Now we have to decorate it. (sigh)

Learning Colors

2008-06-30T11:24:00.000-07:00

Whitnee has to stand in her stander for an hour every day which on most days is really hard so I have to distract her best I can. So here we are making some yummy sugar cookies which Whitnee helped make, she picked all the colors to make the dough and frosting. Although she looks a little spaced and irritated here, she had a lot of fun and took a great nap afterwards.

Whitnee helping to make cookies

Pink was the first color she wanted to do.

Our finished product. What a wonderful rainbow of colors and

they were so yummy. Whitnee got to try a little of it too.

2008-05-27T15:18:00.000-07:00

I am sorry no pictures again. We actually spent most of last week up in Idaho at Grandpa's house. The Viewing and Funeral were wonderful I think Grandma looked great and the Funeral could not have been more perfect (except for the weather). Even the kids letting balloons go at the cemetery was something that Lana would have loved.

Whitnee did surprisingly well as we drove up there, I only had to stop twice, once to buy a portable DVD player (I swore I would never own one for the car, I feel that kids need to use there imaginations like I had to while growing up, But I think Whitnee is an exception to that for now. Although the DS is a must in the car also) and the second for a diaper change. I was really surprised at how well she slept up there too. We did have one night that her Sat's dropped below 88 but I think it was just allergies, so we sat up doing cough assist and suction for a while (as she begged to watch The Bee Movie at 4:00 a.m. which mom and dad said no) we finally got her Sat's up and she did great the rest of the morning. Driving home was interesting, we had a Stoddard/Ward moment where we had to stop to try and do suction and cough assist to help her move things around and stop her coughing. So we stopped in Blackfoot, which is where Kortnee was born so it is our old stomping grounds. This was the fun part, to say that it was pouring rain is an understatement, as Mom and Jessica stood at the van door trying to block Whitnee from getting wet I did suction. Then I left them to do the cough assist while I ran into Albertsons to buy some allergy medicine. While at the check out Jessica came in saying they could not get the pressure up high enough on the cough assist, so I quickly ran over to the SELF CHECK OUT ( which it really is not it is just a slower lane where everyone thinks they can do it but the machines are too stupid to let you do it, so you still have to wait for a checker to come help, which of course there is only one checker for 4-6 stands :{ ) Anyway, as I scanned the item, it told me it was an invalid item so I HAD to wait for someone to help me now you understand my frustration. So finally he came over to help, well it did the same thing to him, so they had to go check the price because apparently the customer is never right! And then we had to wait for him to enter the price etc....

Finally I was able to get back out side to help out with the cough assist. Come to find out my inverter did not have enough power to handle the cough assist (thank goodness we did not blow the electrical in my van) So I said we better get moving so we can get her to Lecia's for cough assist, which was 2 hours away. As we got back in the van, I looked at everyone, Whitnee was dry (they did a great job) But Mom and Jessica were another story. As we drove down the road my mother would flip her hair just right for me get a nice spray of water all over me and Jessica thought that was quite funny. Two hours later as we got out of the car, we all were pretty much still wet it was so funny. But we made it home in one piece and Whitnee did great.
Don't we just love adventures!

We are now awaiting summer vacation, which is only 3 days away (not sure why they did not just let the kids last day of school be before memorial day weekend) what a waisted week. But oh well. I am hopeful we can get away a couple of times this summer now that we have seen how well Whitnee travels I hope we venture out again and soon.

2008-05-17T20:46:00.000-07:00

Well, today has been a very hard day. Nate's mother passed away this afternoon due to the cancer in her body. Had we known how fast she was going to go we would have gone up with Nate Friday night. But we were told that she might have a couple of weeks still, so we decided that we would go up later to say our goodbye's. When Nate called this afternoon to see if we could come up tonight I hurried best I could packing up the kids things and Whitnee's machines. I managed to get the car loaded in an hour and a half and while we were waiting for my mother to come to help me with Whitnee, I got a call from Nate letting us know that she had passed.

We are soooo sad to lose such a wonderful and loving mother, grandmother and friend. She brought so much love and joy into all of our lives, and will be greatly missed. It is hard to believe that it has been four year since she was diagnosed with her Thyroid Cancer. She had gone through a lot of pain over the years especially recently. It brings great peace to know that she is not in any more pain.

We love you so much Mom, Grandma you are always in our thought and prayers.

A Successful Day Away!!!!!!

2008-04-21T09:45:00.000-07:00

Well, we finally did it. We got a way for a day and spent it with some friends of ours in Park City. We went not knowing how well Whitnee would do but she surprised us. She slept very well during nap time, so that excites us for an over night trip in the future. It also helped that no one was in the room so it was very quite.

As you can see we spent the whole time in the pool. I wish I had gotten more pictures. We bought Whitnee a life jacket and it was perfect for her. (dang did not get a picture) She just sat there and floated telling everyone to look as she sat and kicked her legs and arms. Getting her out of the pool was hard she screamed and screamed. Saying "water, water". When she woke up she said to daddy "water". The funny part was when we woke up the next morning at our house Whitnee said to Nate "water gone". And bath time just is not the same.

Kortnee and Nic as you can see loved every bit of it. Nic actually learned how to swim while we were there and was just as proud as could be. Thanks Boyd!!!

Thank you so much Hooper Family for inviting us up to spend the day with you. We loved it.

Nic's 8th Birthday!!!!

2008-04-21T09:15:00.000-07:00

Nic was so excited for his 8th Birthday for a couple of reasons. He could hardly wait to be 8, baptised and starting Scouts. (not sure mom is ready for this). He had a great Birthday, He got a new Basketball and Basketball stand and new Soccer cleats along with his new Scout Uniform which he had to put on when Uncle Chris came over in his Air Force Uniform. They both looked great!

Nic starts Scouts tomorrow-mom still needs to sew on the patches:{ and we just found out it is the pine wood derby so we may be up all night making a car. Who knows. Nic will be baptised on May 3rd and is really excited!

Easter 2008

2008-04-11T13:25:00.000-07:00

Well Easter was a lot of fun. We did 4 Egg Hunts, Nana came over and did one with the kids. And Nate's Family came down for our March and April Birthday party/Easter Egg Hunt. Kortnee and Nic each went on one together and Whitnee had ner own. (a lot easier to find). The kids had a lot of fun. Here Nic is picking out his prize out of the prize box, Kortnee is wearing her prize, ear and teeth. lol and Whitnee is digging through her basket at all the cool eggs.

We were really happy the weather was nice enough for us all to be out side!

Welcome to "Holland"

2008-03-25T16:30:00.000-07:00

I wanted to post this story I received from a friend in Texas who also has a little girl with SMA. It truly expresses my feelings and I thought I would share it with you so you could get a small glimpse of our lives and feelings. *Get your Kleenex ready!

Author: Emily Pearl Kingsley
"I am often asked to describe the experience of raising a child with a disability--to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

Welcome to Holland

When you're having a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy! All my life I have dreamed of Italy!"

But there has been a change in flight plan. They've landed in Holland and that is where you must stay.

The important thing is that they haven't taken you to a horrible, disgusting place full of pestilence, famine, disease and filth. It's just a different place.

So you must go and buy a new guide book. And you must learn a whole new language. And you meet a whole new group of people you would have never met.

It's just a different place. It's slower paced than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they've had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a significant loss. But if you spend your life mourning the fact that you didn't get to go to Italy, You may never be free to enjoy the very special, the very lovely things about Holland. Their demands are small, but their love is enormous. These are the windmills, tulips, and the Rembrandt's of Holland. You won't find them in Italy."

I am very grateful for the blessing I have of being in "Holland". It has been one of the greatest experiences of my life, as difficult as it has been it has been worth every minute!!!

Spring is in the air

2008-02-25T12:20:00.000-08:00

Wow, we had a rain storm come through the other day and you could smell it in the air. I love springtime:) I see my tulips starting to come up in the pile of yucky junk from the winter, and I get excited to be out planting flowers and just sitting on the front porch. Whitnee asks everyday if we can go out side so I am really hoping that it is really going to be in the 50's this weekend like they are saying so we can get Whitnee out and soak up some sunshine.

I asked the Young Women and Relief Society if I could get some volunteers to help with Whitnee's P.T. I guess we had 23 sign up between the two and 6 actually show up for the training. This will be our first week with help and I am actually looking forward to it. Whitnee sure loved the 2 young women who came to the training. She does not really get to interact with anyone other then us, so it was and will be a nice change for her.

Nate got to take the 4-wheeler up the mountain this weekend and managed to get high centered in the snow twice. Thank goodness the neighbor was with him and pulled him out. He said there was so much snow up there he could not believe it. And of course he can't wait till it melts a little more so he has some nice mud to ride through.

As for Kortnee and Nic, they have enjoyed the last couple of days being able to ride bikes, scooters and just be out side. As for me, well, I was able to make it to an enrichment night last week, (hair clips) it was quite fun. I had to come home and buy all the stuff so I could make them at home. Kortnee has loved it to.

Sorry no pictures this time, we really are quite boring which is just fine with us. We don't need any excitement around here that is for sure.

SNOW SNOW SNOW

2008-01-30T11:37:00.000-08:00

What a snow year we have had, since it is so cold out side we try not to take Whitnee outside. So we bring the snow in to her. These are just a few of the pictures taken today of her playing in her bucket of snow. She like's to wear her hat and gloves too just like Kortnee and Nic.

Today I had to convince her that the snow was really cold, but being a 2 year old she had to figure that out on her own. So once she touched the snow she was okay with letting mom put her gloves on. She got her RSV shot today, so the snow was a really good distraction afterwards, and allowed for an extra 20 minutes in her stander. Yes we actually made it an hour today:)

Enjoy the snow!!!!!!

2008-01-18T12:46:00.001-08:00

Here are a couple pictures of Whitnee is her new princess room. She really likes it and loves to show everyone her princesses and thinks that her t.v. mounted on the wall is pretty cool too.

2008-01-18T11:41:00.000-08:00

Well, now that the Holiday Season has come and gone we are back to some what of a routine, with Kortnee and Nic back in school I have gotten back into my routine with Whitnee. She is doing amazing. In December she was able to get her Stander and Powerchair. Here she is thinking about driving it. She has actually become quite the pro at driving it. She is now trying to master backing up and turning. It is really neat to see. It kind of surprises me a 2 year old can figure it out and do so well. She has had 3 RSV shots this season and is doing really well in staying healthy, she had 1 cold over Christmas but kicked it rather fast. Dr. Swoboda has put her on a medication called Valproic Acid. And to be honest we don't quite know what it is supposed to do (other then it being a seizure medication which she does not have) but Whitnee has gotten stronger in using this drug. She can now sit for 30 sec or so on her own. She can lift her arms above her head while laying down and lift her legs high too. (which she has never been able to do before in her life) Her head control has gotten stronger and she is actually using her arms more and lifting them higher. We also think that the medicine helped with the cold she had.

Nothing else is really new around here, just sitting and enduring the awful winter months. Kortnee and Nic are doing great in keeping their hands clean and staying healthy. And I think they are enjoying school. There are not to many kids in our neighborhood their age so they are really board right now. Spring can not come fast enough so we can get out and play some soccer.

Nate is going stir crazy right now too, I think he needs a good 4 wheeling trip and soon, so anyone up for it just let him know. I myself have started doing yoga and am actually enjoying it, along with finishing Whitnee's princess room. I am now getting ready to try some new home decor techniques in my home. I figure I have a couple more months of being cooped up I might as well, try to do some things around here (even if it takes twice as long with out the kids being here to help out with Whitnee). It is my way of venting and I love it.

2007-12-19T15:46:00.000-08:00

Here is a little video that we put together to thank all who have showed us concern and offered to help with Whitnee. We all thank you and hope that you have a Very Merry Christmas and a Happy New Year.

2007-11-05T10:09:00.000-08:00

Just a quick update. All is well here, Whitnee had her testing done at Primary Childrens on Friday and to our surprise she did really well. Her Physical Therapy test went a lot better then expected. She actually rolled from her back to her left side for the first time in her life with little help!!! And yes they did get it on film!

Her testing with Dr. Swoboda went really well also, showing her strength had doubled since May! Proof that good nutrition is very important! They also started her on a new Medicine that we are hoping will help her gain more strength.

And to top off the great news at our house Whitnee was approved for the RSV shot today! (Insurances usually do not approve children 2 and older for this shot.) We are being blessed and defiantly being watched over! She was also approved for her Power Chair and her stander and we should see them by the end of the month.

But the battle continues for her car seat and bath chair! Dang Insurance.

Thank you for keeping us in your prayers!!!!

2007-11-05T08:56:00.001-08:00

The Nathan Stoddard Family

Kortnee, Nic and Whitnee

Our Pride and Joy!!!!!

2007-11-05T08:49:00.001-08:00

Trick or Treat!

Oh how cute!

Nic our Friendly Spiderman,
always dressed up in his costume.

Whitnee, how precious is that.
She loved her costume and did not want to take it off

Kortnee our DIVA!
She loves to dress up and pose.

Carving Pumpkins

2007-11-05T08:26:00.000-08:00

Kortnee cleaning out her pumpkin

Nic cleaning out his pumpkin

Whitnee cleaning out the pumpkin
and putting the seeds back in!

Eww aren't they scary!!!

2007-11-05T08:17:00.001-08:00

Happy Birthday Whitnee!

Whitnee had a really fun Birthday. We sang Happy Birthday to her, which made her cry! ( I think it was a little loud and scared her). We then blew out the candle on the cake and had cake and ice cream which was great. Whitnee could not get enough of the ice cream and she was very determined to feed herself. It was cute.
She loved her presents and her new ball toy. She stayed up really late playing with it, I think she loved watching Nic and Kortnee chase the balls more then anything.

October 2007

2007-10-18T12:33:00.000-07:00

Well, we have had yet another stay at Primary Children's Hospital in the PICU. This was due to a cold that hit her hard and fast. I got concerned with her Oxygen numbers and her heart rate along with her breathing so we called the paramedics who took us up to Primary Children's. Her lower left lung collapsed the night we got there, I think they decided to call it a Bronchial Virus. The good new in all of this was that the did not have to intubate and we were only there 7 days. We have been home a week now and she is doing great.

I have spent my free time making signs and posting them around the house to remind all of us to keep our hands clean. We sure hope that this was not a precursor to the season for us.

On to better news, today is Whitnee's 2nd birthday!!!!! This is a HUGE milestone for her with this disorder even though she is type II. She will get to open her presents tonight along with eat as much ice cream as she can (sorry no cake). We can hardly wait!!!! Thank you to my wonderful neighbor for making her Birthday cake. We can hardly wait to see it!

I took Whitnee shopping for her birthday today, she got some new clothes and a had fun strolling around the store. It was just nice to be out of the house and hospital for that matter.

I will post pictures later when I have some more time.

September updates

2007-09-17T13:04:00.000-07:00

Well, last week marked a big day for us, Shriners Hospital donated a manual wheelchair to Whitnee. And it is even Purple! It was a really exciting day for us, even though you see that Whitnee was really tired for the fitting.

It has taken some getting used to, due to Whitnee's partially dislocated hip it dose tend to put pressure on her hip if she has been in it to long, but I have noticed in the last couple of day's that she is doing better sitting in it. I tried to take her out the other day and she took the lap buckle and tried to buckle it back up herself. So we are seeing that she enjoys being in it. And I know it is a lot more comfortable for her to sit in.

I think it has taken me some time to adjust to the chair too. It was bigger then I had expected weighing in at 40lbs, which is not a whole lot but it is very difficult to to lift and load.
Putting it in the Van for the first time was very interesting. I Thought I would not be able to get it in. I was very thankful that we had just purchased the Van and that I was not putting it in the explorer. We now have ramps that help me load and unload but running to the store is not and in and out experience any more. I have to allow plenty of time to load and unload. Kortnee and Nic are a lot of help with it too.

Our next project is building a ramp in the garage for the wheelchair. Right now it is interesting getting it up the steps and into the house. I am glad there are only 3 steps.

We had a chance to go and see Uncle Chris at at Camp Williams for Governors Day a couple of weekends ago and see some really cool Helicopters and Air plains fly over head.
Here is Nic Whitnee and Kortnee sitting in a Helicopter after the ceremony. It was really cool.

As for other news this month. Mom got a Van for her birthday as mentioned before and Since she had so much free time on her hands, ha ha ha. We adopted a Shorkie Puppy this past week. She is 1 years old and really cute. Both Dad and Mom felt that a therapy dog for Whitnee might do her some good this winter being cooped up and all. So we are all adjusting to the new little dog running around. Kortnee and Nic are playing Soccer again and seem to be enjoying it. And Nate just went on a 50 mile 4-wheeling trip. He was in heaven.

Everyone is doing well and keeping very busy. Fall and Winter is a scary time of year for us with Whitnee, with her chance of catching any thing being very high. So we want to thank you for all of your thought and prayers. We are also great full for those of you who have taken the time out of your busy schedules to call us and visit with us. We sure do have some great support out there.

Thank you:)

Power Chair Update !!!

2007-08-14T08:42:00.000-07:00

Well, I promised a picture of Whitnee learning how to drive a power chair. We went up yesterday to Shriner's to try out another joy stick, this one is very sensitive to the touch so it was perfect for her to use. She sat in the chair for 45 minutes just spinning in circles. She loved every minute as you can tell.

We go back up to Shriner's on Thursday the 16th to sit down with Shriner's and IHC Health to write up our order for her power chair. And if every thing goes well with our Insurance ( cross our fingers) and they don't turn us down for anything we should have her power chair around Thanksgiving. Yippee!!!! We can hardly wait for her to be able to move around on her own.

Yesterday when we got there and they were setting up her joystick and trying to get it to work, she begged and begged to sit in the chair. She kept pointing and it and saying chair, chair. She already know that it allows her to be free to do what she wants.

Shriner's is also building and giving her a manual wheelchair to have also, so we are in the works for that chair to. Just a few more trips to Shriner's for some measuring and trying things out and I think we will be good. Thank you Shriner's for all your help!!!!

Long Time... No Update... Til' Now :)

2007-07-14T17:46:00.000-07:00

Well I guess it is time to update our family site. We are all doing really well, with school being out I have a lot of help at home and I love every bit of it. Kortnee and Nic played soccer this spring and sure had a blast doing it. Nic managed to make the final goal for the year again to tie up the game. Boy was he on cloud 9. Kortnee did great too, her coach actually walked up to Nate and said I can't believe how aggressive Kortnee has gotten with the ball. Boy was her dad proud.

They have also spent time up in Idaho with their grandparents and cousins too. This last visit was for a week and yes mom had a hard time with them being gone that long. But my wonderful Niece came and stayed with me while they were gone to help me out! Thank you Jessica. We love you !!!!!

We thought we would try our first family trip since our episode with Whitnee to the Hogle Zoo! The kids loved every bit of it. I think Whitnee's favorite part was the Monkeys, every time she saw one she would say Bobo Bobo (thank you Diego!) It was really cute. We had to cut our visit short due to the heat. So we plan on going back to finish our sight seeing this fall when it is quite a bit cooler for Whitnee. Well Whitnee had her first cold after our little episode in March, we managed to get through it with out Nate and I having a nervous breakdown. We are so greatful for her cough assist and suction machine. We managed to make it through her 2 week cold and so did she with out having to call the ambulance! Yippee !!!!!

I guess our most exciting adventure this summer so far was our trip to Shrinners Hospital this week for Whitnee's Wheelchair Evaluation. They measured her for her Wheelchair and then put her in a electric wheelchair and let her play with the joy stick. Her facial expression was priceless when she pushed on it the first time and started going in a circle. The look of Wow it moves when you touch this thing. The giggles between the movement was wonderful. A few more trips up there to play with the Wheelchair and I think by the end of August we will be in the process of purchasing her chair.

Welcome Home!!!!!!

2007-03-30T14:43:00.000-07:00

YEAAAHHHH Whitnee's home. After a long stay at the hospital Whitnee was able to come home on Wednesday. She still had an "IV" to administer some antibiotics, but it was taken out last night around 6:30pm. So now she is sitting on the couch and laughing at her brother and sister. Even Daisy (the dog) noticed her being gone so long, she wouldn't leave the bedside all night until I rousted her out.

What's Next?
Well we will be feeding her through her "Gtube" for the next 6 weeks at least and possibly longer, only because she did not pass her swallow test at the hospital. The doctor said that she will likely recover fully, however the "G-tube" will always be a way to assist her staying healthy. As for the rest of us we are trying to get used to the routine. Anna, should get an honorary nursing degree after all of this.

As for now we are all doing much better especially not having to consider the hospital a second home. Still many things to come and learn over the next few weeks, but couldn't be happier now that she is home. I have had a few people ask about visiting and what they can do to help. Visiting is great, we just ask that you make sure you are healthy before you come. As for what we need, well we aren't really sure yet... We are still waiting for word back concerning her wheelchair session. As for now Just coming out and visiting is great.

Successful Surgery & HOME STRETCH!

2007-03-25T08:37:00.000-07:00

Tuesday's Surgery went really good. WHitnee now has a second belly button and loves to tell us about it. She was able to recover pretty quick from the re-intibation (due to surgery) and is now just a little sore from the procedure, but overall really doing well. Here is a picture of her with Dad (first time I got to hold her since this ordeal started).

It seems that we are in the "home stretch". Doctors are now pushing her off of the bi-pap machine for longer periods of time. The only time she will need to be on it is when she sleeps and when she is sick. Today we are hoping she can do 9 hrs independant of the bi-pap but we will see. What does all of this mean? Well, we think that she may be able to come home either Tuesday or Wednesday.

I want to thank everyone again for the calls, emails, and prayers of support. It has really helped to know that we have good family and freinds to help us.

Whitnee's Surgery

2007-03-19T20:25:00.000-07:00

Sorry we don't have any pictures this time, but we figured we needed to update the blog nonetheless.

Whitnee has been doing really good since the last time we posted. The ventilator was removed (extubated) on Friday 16th. She came off and exceeded the expectations of the doctors in the first 24hrs. She is now on a Bi-pap machine. The bi-pap provides the same type of assistance the ventilator did just on a "lesser" scale. The bi-pap machine will be another machine to Whitnee's entorauge. We hope at this point it will only be required when she sleeps.

Tomorrow Whitnee will be undergoing surgery. The procedure is called Nissen (named after the doctor that created it). To explain why we are doing this I have to tell you what the biggest things we have to battle.

1. Fatigue
Fatigue plays a big part in her well being. Even as much as eating can cause her major fatigue, which then causes her to not progress physically including her immunity system and limited motor functions.
2. Aspiration
Aspiration can happen at anytime regardless of what she has eaten or is eating.

To battle these two things we are proceeding with the Nissen G-tube. It is a procedure that allows us to offer the nutrients that Whitnee needs, and also helps prevent aspiration.

Click here for more information on the Nissen procedure.
Click here for more information on "G-tube".

2 weeks and still Going Strong

2007-03-13T17:41:00.000-07:00

Well we have been doing really good in the ICU lately. This shows Kortnee and Nic visiting their sister for the first time. This last few days has been pretty good. The recovery is coming along.

Whitnee has been able to come completely off of the sedative as of today and is making the nurses melt as she laughs at her finger wrapped in a foam band-aid to hold the Pulse-OX probe in place. She loves to read books with the nurses and even allows the Resperatory Therapists to get close without much of a fuss. We are still probably looking at a few more days of her in the ICU. SMA causes some issues of dependency on the respirator machine so they are slowly weening her off. Once she is rid of her cough and issues and her lung clears (upper right) we can start looking to bring her home.

She likes her teeth getting brushed mostly because they put water on the little brush/sponge and she likes the cool feeling (reminds me of a baby bird)

Thank you all for your calls and willingness to help out. Everyone has been so great and the food and goodies have been almost more than Dad can handle (yeah right). Your love and prayers are felt.

Great Progress

2007-03-09T15:08:00.000-08:00

It has been a bit of a ride for the last week. Whitnee has been doing really good. We are in our sixth day in PICU (Pediatric Intensive Care Unit) don't be to alarmed, this is common for Whitnee's condition, SMA patients tend to become dependent on the ventilator so she has to be weened from it.
I will try to get all of the events over the last few days into this blog... Monday Whitnee was stabalized but we had to change medications becasue she so irritable. I was told that they had given her enough to knock me out but it didn't seem to have an effect (sniff... I'm so proud... little steamroller :) so they moved her to morphine. With the morphin however her body was a littl to relaxed and didn't provide enough energy to the septic works in her body so she started to bloat and they had to lay off of the morphine. The result of that however was an event of flatulence that would rival her father after eating a full course "Bean Meal".
Tuesday she actually opened her eyes a little and was still really irritable. but made progress with the ventilator (meaning they were able to ween her a little more)
Wednesday Mommy was able to put her hair in pigtails and she then became the talk of the ICU. I think the nurse vote for "If I coould have _____ like Whitnee" her big blue eyes and eyleashes won.
Thursday she was able to wake up and actually interact with mommy, she was able to read some books and watch the disney channel
Friday (today) she woke up smiling and giggling at the stuffed chiuaua. She also got a duck from the Hill's that just about caused her to spit out the ventilator tube from giggling. She also got to see daddy and thought that he would love to see her cool new little finger ring (which is the "pulseoxymeter" sensor. Cool nonetheless)

All in all she is doint really good, she still has some blockage in her upper am dmiddle lobe of her right lung that they are hoping will come out wit continued RT (respriatory therapy).

Bookmark this page and we will continue to push new updates to it.

Episode I

2007-03-06T14:43:00.000-08:00

Sorry I started the entries a little late this was actually
March 3, 2007

Today was a day to mark as our first “Episode” with SMA (Spinal Muscular Atrophy). Whitnee had started a cold on Thursday (1st). We dealt with the cold as instinct told us to and made sure she was getting lots of liquids, naps, vitamins etc… she seemed to be doing well with the congestion, as slight as it was, and stayed playful for that day thru Friday. Friday we were able to win a battle with the insurance and get Whitnee the “RSV” shot she needed. We were even able to get her on somewhat of a routine on the cough assist machine that we had received, yet another battle won, the Saturday previous.