Mi4Boys

10

2012-01-19T22:54:00.000-06:00

Avery turned 10 on January 12th!

I can't believe I have a child with double digits! Seems like he grew up overnight!

Here is our annual birthday interview....

INTERVIEW WITH A 10 YEAR OLD

Best thing in the world ~ Sports

Favorite game ~ Playing sports

Animal I'd like to be ~ An eagle so I can fly

Favorite movie ~ S.W.A.T.

Skate boarding or bike riding ~ Bike riding

Worst subject ~ Math

Best subject ~ Reading

Best present ever ~ iPod Touch

Spots or stripes ~ Stripes

Favorite food ~ Hotdog

What do you collect ~ Bouncy balls

Wants to be ~ Surgeon

Best thing I've found ~ $20

Favorite word ~ Nebraska

Worst food ~ Vegetables

After school enjoys ~ Going outside

Hidden talent ~ Football

Favorite book ~ No More Magic

Favorite person to be with ~ God

Best thing about being 10 ~ Double digits

I love you more than all the stars in the sky!

"You are my Sunshine!"

Sixty-Five Roses

2011-11-16T00:52:00.000-06:00

Tonight I went to see Everlast play at the Waiting Room here in Omaha. I don't know if many of you know who Everlast is, but he used to be in the rap group House of Pain. Remember the song "Jump Around?" from the early 90's? Anyway, it has been awhile since I have gotten to see live music, so I thought Everlast would be a good one to go see since he just put out a new album.

Before he sang the song Sixty-Five Roses, he explained that he has a daughter with cystic fibrosis. So of course I had to come home and do a little research on the song. This is what he said about it in an interview for the New York Times when he was asked if there was a particular track on his new album that he liked....

"There is a song called “65 Roses.” My daughter was born with a genetic condition called cystic fibrosis. As we did research we found there was this organization called 65 Roses, and we were trying to figure out why and it was like because that’s how kids who have cystic fibrosis end up pronouncing it: 65 Roses. The song isn’t about the disease, but it’s about the path of coping with and accepting this thing that has been brought into your life that you didn’t ask for. If you don’t get the right mental state as a couple and get yourselves together, it will break you and grind you into dog meat, sitting around waiting for the hammer to drop."

Something about the song resonated with me. I know firsthand what it is like to have a child with a genetic condition and understand what it is like to have to cope with something that you did not ask to be brought into your life.

I hope you enjoy this song as much as I did!

It's been a bit of a while since I seen you smile
It's been too long baby what went wrong
Tell me how it got spoilt
Tell me when it went bad
How to get back to the times that we had

We're both young
And our spirits are old
Now we're just angry and we act like we're old
We can't even talk it out without one of us walking away

You were 18 I just turned 29
I was fresh out the coffin and
Girl you were so fine
The future was bright
The world, it seemed new
I was with some other woman
I was thinking of you
Knew how it hurts
Knew how it feels
Knew it how aches
Cos the heart never heals
We're so busy screaming that we don't hear the words that we say

Taking out lumps
Took a few blows
Hit a few bumps
Had our fair share of wounds
We tried to see good
Through all of the bad
Put on our smiles
Pretend we're not sad
Gotta be tough
Gotta be strong
Gotta be right
Can't afford to be wrong
It's hard to sing the blues
When you're hearing bad news everyday

We worry too much for one couple to bear
Hunger so much for one person to care
Fooling our family
We're fooling our friends
Pray that the pain and the frustration ends
Hope is a chance
Hope is a dream
Hope is a drug
Maybe hope's a vaccine

In the race against time I get down on my knees and I pray
Shout at the devil
I curse the lord
Offer them everything I can afford
I'd sell out my soul
I lighten to see
Tried to be righteous
Tried to believe
Prayed every prayer
Kicked all of my highs
For hours I'd stare at those beautiful eyes
All of my problems seem to be melting away
The smile on her face says daddy everything is okay

In the race against time I get down on my knees and I pray

Oak Valley

2011-08-23T17:03:00.000-05:00

I was fortunate enough to have a few hours to spend in Vinny's preschool classroom yesterday.

He has a fabulous teacher who has three wonderful para's in the room to help out!

Vinny has his own chair to sit in when the class is participating in seated activities. In this picture, Vinny is using the Big Mac switch to tell the class his name.

This is the schedule for the day...

Vinny's para is offering him two choices to decide which play station he would like to go to...

Of course he chose to go to music.

Vinny's grandpa got to spend the morning in the classroom with me...

He couldn't resist playing with the other kids.

Vinny got to be the weather helper this day.

Playing music with his para.

Vinny's locker.

He looked so big to me sitting in an actual chair! His feet almost touched the floor.

Vinny and his teacher working on putting items in the cups.

His teacher helping him make his name card. She was giving him two choices. Vinny would actually reach out and point to one of the cards of stickers.

Check out all of these equipment options! Vinny will be using the Pony Gait Trainer just like we have at home.

Kicked back reading (chewing) on books.

Playing outside in the gait trainer.

Practicing walking with the PT and OT.

Playing on the equipment. I am surprised he allowed the PT to help him walk through it!

Overall, I was very pleased to spend the morning at his school. Everyone seemed so helpful and interested in Vinners! I think I am going to like this preschool thing after all. I hope that school will provide him with new opportunities to learn and grow!

As I was leaving the building, I walked out of his classroom and saw this teacher wearing this t-shirt! This just re enforces my decision to send him to Oak Valley. What a great school even though it is clear across town from us!

I have to have one of these shirts, so I spoke with the gym teacher who put me in contact with the director of Youth and School Programs for the Special Olympics. I am currently speaking with her about different programs that she gets into the schools......

preschool

2011-08-18T22:55:00.001-05:00

We did it! Vinny and I made it through his first day of preschool...

I thought this is how I would be most of the day, but I surprised myself by only tearing up when I put him on the bus!

Our day started out early...

Everybody was so excited (anxious in my case) for Vinny! Grandpa had to come over and help see him off on the bus...

It is amazing how vulnerable you can feel knowing that you are turning your helpless, dependent, non verbal child over to others who do not know him!

Thankfully Vinny's amazing nanny Tina volunteered to follow him to school and spend the morning with him and help educate the teachers on his quirky ways.

More about Tina another day....

She deserves a blog post all of her own.

Vinny didn't seem to mind being strapped in....as long as he had his sucky and woobie.

This is Gwen the bus driver.

There is also an aide that rides on the bus to help out if needed.

Both seemed really nice and are already in love with Vinny.

Tina reported that everything went great and Vinny seemed to do ok in the classroom.

One of these next few days, I am going to sneak up to his class and observe how he does.

When Vinners got home, he was pretty tired and just chilled out with Leo on the couch.

Leo was all over him and said he was worried about Vinny all day.

So all in all, I think we both made it through the day just fine.

I feel so much less stressed about preschool.

Just one more change in the routine out of the way. My life seems to be so unsettled lately. Definitely looking forward to getting into a new "normal" whatever that may be.

I will post soon with pictures of the other boy's first day of school pictures!

it's been awhile mom!

2011-08-03T23:56:00.001-05:00

Avery said to me today that it has "been awhile" since I posted on the blog.

Apparently he checks it regularly when he gets on the computer at his grandparents house.

Life has been some what crazy and not routine for us lately.

This summer has flown by with birthdays and vacation.

I am hoping that soon we will have a "new normal", whatever that may mean!

I feel like my head has been somewhat scrambled and searching for normalcy in our lives....

I am beginning to think there is no "normal" anymore?

I try to remind myself daily to be happy and live life for what it is and appreciate what I have right now!

I tend to forget that at times...

Life will move forward with or without you....

My boys are growing up so fast! School is starting in less than two weeks!

My "Little Bear" will be starting kindergarten...unbelievable. Frankie has been by my side for the past three years going to therapies, appointments, and taking naps with me.

Vinners will be starting school as well. As of now he will be going two days a week. I am excited for him, but apprehensive.

I am certain he will thrive and show me that he is ready. Only if I felt that way.

I know that soon my head will unscramble it self and life will settle into a "new normal" routine. I continue to remind myself to be patient!

7

2011-07-11T21:00:00.001-05:00

Happy 7th Birthday Leo!

My crazy middle child is 7!

Leo's "Birthday Interview"

Favorite thing the the world? Spiderman

Favorite game? Cars

Animal I'd like to be? Monkey

Favorite movie? Spiderman

Favorite thing to do outside? Swim

Best ever present? Spiderman toy

Spots or stripes? Stripes

Favorite sandwich? Cheese sandwich

Wants to be? Taxi driver or architect

Most ticklish? Armpits

Favorite word? Spiderman

Worst food? Hot dogs with mustard

What do you enjoy doing? being Spiderman

One thing you are good at? Drawing

Favorite person to be with? Vinny

Best thing about turning 7? I am going to be older like the bigger kids

Favorite thing to do with mom? Take naps

Favorite color? Red, white, and blue

Favorite food? Pizza

Favorite song? Never Say Never and Baby Baby by Justin Bieber

Favorite game? Baseball

Skateboarding or bike riding? Skate boarding

Hidden Talent? Climbing

Favorite book? Spiderman

Happy 7th birthday Leo Love!

I love you more than the moon and all the stars!

3

2011-07-10T23:14:00.001-05:00

Happy 3rd Birthday Vinny

It is unbelievable to me to sit here and think that you are three years old all ready! It seems just like yesterday you were brought into my life. I am amazed at how your beautiful soul has caused me to change and grow in ways I could never ever imagine!

I am more at peace with myself today than I was before you were born! I thank you for everything that you have taught me!

You constantly remind me to....

be patient...

take one day at a time...

smile and laugh more...

be thankful for the little things in life...

celebrate life and little achievements...

expect the unexpected...

Thank you for helping me be the person I am today!

You have given your brothers the amazing opportunity to grow and become better people!

Happy 3rd birthday Vinners!

I love you more than the moon and all the stars in the sky...

Scuttle Butt

2011-06-12T23:00:00.000-05:00

Vinny has finally master "his" mode of mobility....

We call it "scuttle butt"....

He started doing it about a month ago and has really perfected it now!

This kid cracks me up....

His physical therapist has now crossed off crawling on his goal list!

Thought I would post a video of his way of moving!

♥ 5 ♥

2011-06-12T22:41:00.000-05:00

Frankie is 5!

We celebrated Franklin's 5th birthday on June 10th!

He was so excited to turn 5 this year!

Frankie wanted to "hang out" in the backyard and grill out...

So we had family and his best friend over to celebrate!

Frank and Breanna

These two are hilarious when they are together!

They act like an "old married" couple....

Breanna has her own style of dressing just like Frank...

Maybe that is why they are good friends?

When I asked Frankie what kind of cake he wanted for his birthday, he would have a different answer each time...

So on this day his grandpa took him to the store to order a cake and this is what he decided on...

He was so sweet to Breanna, he let her have one of the cars off of his cake...

and let her help blow out the candle...

I thought Frankie was old enough this year to complete my "Birthday Interview"

So here it is!!

Favorite thing in the world? Tigers
Favorite game? WWE
Animal I'd like to be? Mouse
Favorite movie? Monsters Inc.
Favorite thing to do outside? Play in the backyard
Best ever present? Little Dodge Charger car
Spots or stripes? Spots
Favorite sandwich? Jellyfish (translation: peanut butter and jelly)
Wants to be? Batman
Most ticklish? Armpits
Favorite word? Car
Worst food? Carrots
What do you enjoy doing? Playing on the swing set
One thing you are good at? Pumping on the swing
Favorite person to be with? Avery
Best thing about turning 5? My birthday
Favorite thing to do with mom? Take a nap
Favorite color? Red
Favorite food? Hot dog
Favorite song? You Are My Sunshine

Happy 5th birthday Franklin James!

I love you more than all of the moon and stars!

CdLS Awarness 2011

2011-05-14T22:58:00.001-05:00

Vinny and I have been busy this week spreading awareness about Cornelia de Lange Syndrome!

Our first stop was at the State Capitol to receive the Proclamation for "Cornelia de Lange Syndrome Awareness Day" on May 14th.

This was pretty amazing as we got to meet and shake hads with the Governor Dave Heineman.

During the process I had asked this woman we were sitting next to if she could take some pictures when we were receiving the Proclamation. I ended up spending about 20 minuets talking with her about Vinny and CdLS.

On Friday, Vinny and I went to Avery's school to speak to the entire third grade class about CdLS and Vinny...

I love this picture! Franklin and Avery look so proud of Vinny...

I started of by reading the book, Melanie & Tommy have two pet rats and one syndrome. This book was a great way to introduce CdLS...

I then discussed Vinny's G-tube and how he eats, his glasses, and hearing aides...

We talked about what makes Vinny different from other kids...

His small hands...

His physical and cognitive abilities...

Note in the above picture Vinny's glasses...he thought it was funny to keep pulling them down...when he did this over and over, the kids would laugh!

His small feet...

We then talked about how Vinny is similar to other kids..the way he likes to laugh, giggle, eat pudding, play with toys, spend time with his family, etc...

We talked about how if the kids saw another child out in the community that looked or acted a little different what they would do...

These are some of the answers that I got...

"smile"

"ask the child his name"

"ask them their favorite color"

"don't stare"

The kids then had an opportunity to ask me questions about Vinny...

"was Vinny born with a Mohawk?"

"will Vinny walk and talk?"

"does it hurt when he gets fed through his tube?"

"will he go to school?"

"will he go to college?"

"does Vinny sleep good?"

In addition to many more!

All of these questions led to great discussions!

Then the students asked if I would put Vinny on the floor so the could see how he moves around...

Of course Vinny loved being the center of attention and showed the kids how he rolls, scoots on his butt, ad spins in circles...

We then passed out bookmarks to all of the students and teachers. Avery's teacher wanted to hold Vinners, which turned into Avery's class of 23 wanting to hold him....

How could I say no?

I made all of the kids use Purell and line up to hold him.

I wish I had a picture of this...

Each student would hold Vinny for a second then pass him onto the next student.

I was shocked at how great Vinners did...he never got over stimulated or irritated with being passed around.

I truly hope that Vinny had the opportunity to make a difference in a few of the students lives!

I take one of the boys in Avery's class home after school everyday...

When I picked them up that day, Colin said that Avery's "cool factor" went way up because of Vinny!

Overall, we had a fantastic week spreading awareness!

Although May 14th is National CdLS Awareness Day, I think it is so important to educate and spread awareness about this syndrome on a daily basis! It is incredible how many natural opportunities that come up throughout our day to do this, formal and informal!

Make sure to hug your CdLS loves one extra tight today! We are all so blessed to have these special people in our lives whether they are our own child, brother/sister, grandchild, niece/nephew or friend!

Leo

2011-04-18T21:34:00.000-05:00

This kid cracks me up!

It is so hard to get a "typical" smile out of him!

Guess that is why I love him so....

proud

2011-04-12T00:10:00.001-05:00

I for some reason had this post in my "drafts"....thought I would finally get it posted!

I have told you how proud I am of my boys?

Well let me just tell you again!

I had parent teacher conferences recently for both Leo and Frankie...

Some of you know that we decided to give Leo the "gift of time" and start him in kindergarten at the age of 6 vs 5. I have always wondered if this was the right thing to do or not. Throughout the year, he has demonstrated to me that this was a good decision for him!

Now he is more socially appropriate (vs last year), a better listener, follows through with what is asked of him (in the classroom at least), is very eager to learn, and always strives to do his best!

These are all of the things that the teacher told me about Leo when I met with her....

Would make any mom proud right?

Well this is what really really made me proud...

She stated that Leo is a "caring, compassionate, and kind" little boy...

This I have always known to be true of Leo...however, it is always nice to hear it from someone else too.

She said that the classroom recently had a new student start who has autism. She stated that she purposely placed this student next to Leo because she knew that he would do well with the little boy.

His teacher said that is has been amazing to watch how natural and caring Leo is with this little guy and she is continually amazed at how Leo interacts with him.

She then went on to say that she feels that our family is very fortunate to have been blessed with Vinny because she has seen first hand how he has touched our lives!

I walked out of the classroom one proud crying momma!

Frankie's conference was next on the agenda.

He is currently enrolled in the public schools ECSE (early childhood special education) preschool as a role model.

I decided to have him attend this preschool for a few reasons...

One was so I could get an up close look at how this preschool ran as this may have been the preschool Vinny would attend, and two I felt it was a great opportunity for Franklin to be around other "special" kiddos.

Franklin's teacher proceeded to tell me how Franks is doing and that there are no concerns. She ended our conference with telling me how Franklin has connected with a little boy who has down syndrome in his classroom. She stated that this little boy tends to pull hair and does not know social boundaries.

Franklin and this little guy spend time together in the morning as they are usually the first two to arrive in the classroom.

The teacher stated that she gives Franklin all the credit in teaching this little guy how to say hi and be socially appropriate by waving hello to people! As this is what Franklin and this little boy do in the mornings...

Again I walked away one proud crying momma!

My heart just swells for my boys! They are all special and unique in their own ways!

....from behind the lens

2011-04-12T00:06:00.002-05:00

Thought I would update with several pics from the camera....

It has been awhile...

We have been enjoying the beautiful spring weather by spending a lot of time outdoors!

Olivia (my niece & Vinners favorite person) and Vinny...

He loves to snuggle in with Olivia!

I recently took the boys to an indoor Arena cross show...

As you can see, it was quite entertaining!

The boys enjoyed checking out all the bikes following the show....

Who knows what Frankie was doing????

Vinners has been making big strides in therapy lately!

Here he is working with his therapist on using a "Big Mac" switch to ask for more bubbles...

He has received a Rifton gait trainer to trial...

It has been so much fun to watch Vin explore his environment inside and out!

He is always so happy when he is in it!

Giggles and laughing all the time :)

We recently got to meet up with Miss Josie, Deanna, and her Josie's grandma when they were in town.

Vinny enjoyed spending time massaging Josie's back....

And doing her hair!

It feels so wonderful when we get to meet up with our fellow CdLS family members!!!!

Isn't she just beautiful!!!!

Have a great week....

tubes

2011-04-01T00:04:00.001-05:00

Vinny finally got his tubes placed today!

I am thankful that this day came and he was 100% healthy! He has been off of antibiotics for about a week with no ear infection!

Look how excited he was to get his tubes...

Vinners found all of the medical stuff very interesting...

He had to check everything out!

Love how he has his legs crossed...he does this all the time...

Getting some "happy" medicine...

Loved the blood pressure cuff...

"Happy" medicine starting to work...

The blood pressure cuff got to be real funny...

funnier...

and even funnier!

Getting wheeled away with the "funny" blood pressure cuff in his mouth...

Love how the nurse was holding his hand!

This is how we walked into the recovery room to find him!

My tough guy NEVER cried the entire time!

Everything turned out to be fine!

Once in the operating room, the nurse called to let us know that the smallest tubes they had were NOT small enough! They sent a courier out to get even smaller tubes from another hospital....

So poor Vin had to sit on the table knocked out waiting for the new tubes to get there!

I am so thankful for WONDERFUL medical staff and an amazing ENT!

My little Vinners was right back in my arms snuggling in before I knew it....

Now lets hope and pray that the tubes do the trick for the ear infections! I am so tired of vomiting, antibiotics, and losing weight!

Wordless Wednesday

2011-03-30T00:24:00.000-05:00

i ♥ this kid!

"My Friend Vinny"

2011-03-21T21:58:00.002-05:00

The following is an assignment that was completed by one of the boy's that we carpool with. He was kind enough to share it with me, so I could share it with you!

My Friend Vinny

Cute, funny, and lovable. These words describe a little, baby boy named Vincent, but we call him Vinny.

If you were to see this wonderful boy, you'd feel so touched.

He has long brown hair that curves into an awesome mohawk.

He's also got beautiful brown eyes that glisten very bright.

Also, Vinny has a smile that makes you feel fantastic!

Vinny may be cute, but he was also born with CdLS (Cornelia de Lange Syndrome).

The people who have this syndrome, strongly resemble each other.

They may seem to look to have eyebrows that grow together, a short nose, long eyelashes, and downturned lips.

This may also include feeding difficulties.

Although Vinny has a syndrome, he's also got these really fun brothers, Avery, Leo, and Frankie.

These boys are funny, and give me entertainment during the car rides.

I hope you know just how important Vinny is to me.

By Jalen N.

5th Grade

It continues to amaze me how many people's lives Vinny has actually touched! He is a constant reminder to me just how lucky I am to have him in my life!

Have a great week!

i am in love!

2011-03-08T07:00:00.004-06:00

Finally I am in love!

This is how G and M make me feel!

It has been a long time coming...

Several years have gone by...

The nervousness...

Sweaty hands...

Heart beating fast...

Getting weak in the knees...

Increased energy...

Insomnia....

Constant smiling...

Loyalty...

Funny how you forget what being in "love" feels like!

Let me introduce you to G.....

The Gym... and I have finally reconnected!

He gives me "sweaty" palms, and I have become addicted! When I don't go, I feel guilty!

It has been a long time since I have committed to making myself healthy and let me tell
you it feels GOOD!

The "energy" is incredible!

Amazing how I can go hang out with G and when I am finished, I have this crazy energy that I don't know what to do with!

"Weak in the knees", well yes I have come away from hanging out with G feeling "weak in the knees" many times!

I think I am finally adjusting though and enjoying our time together!

So much entertainment he provids....the people watching! Unreal! That is a whole blog post in its own....

Now lets talk about M

I have been thinking about M for many many months!!

I finally just got up enough nerve to ask him out!

Let me tell you how "nervous" I was walking into to meet him!

I almost couldn't take it!

Sometimes I just don't like change!!!

And this was one change that I was glad that I decided to have enough guts to make!!!!!

Let me tell you I am so glad that I did! There is no turning back now!

Mac has brought me "constant smiles"!

In the few short weeks we have been together, he has not let me down!

Now I see why all my friends have said that he is so dependable and worth every penny!

Although he has kept me up a few nights (insomnia)....trying to get him all figured out and learning all about him!!!

There are so many great qualities about M that I still have to learn!

I know he will be "loyal" for many years to come!

Hopefully these are two "loves" that I will continue to keep in my life for along time because they make me feel so good!

Who are your latest "loves"?

simple

2011-03-04T07:00:00.001-06:00

It's the simple things in life that have been making me happy lately...

~ listening (through the baby monitor) to Vinny crack himself up when he is supposed to be sleeping

~ clean sheets

~ my boys getting ready for bed without arguing

~ a full tank of gas

~ a quiet night alone

~the sound of wind chimes

~ a full moon on a clear night

~a good cry

~catching up with an old friend

~making new friends

~seeing an older couple (75 years old +) hold hands

~feeling happy and content

I think it is so important to try and stop and enjoy the simple things in life!

What simple things do you enjoy?

looking out

2011-02-23T23:05:00.000-06:00

a moment caught

2011-02-15T22:58:00.000-06:00

I have been trying to be better about catching life's "everyday" moments on camera!

Here are a few that I have captured recently...

Vin has been enjoying practicing "more"...

and clapping...

whenever he can...

I catch him doing this a lot!

Now if we can just make it purposeful!

Lewie has been enjoying the recent warm days outside...

Kind of makes you want to get down right next to him and soak up the sun too!

Caught Frank the Tank playing with his army guys under the table...

Love that he has on his "Super Man" costume!

happy ♥ day

2011-02-14T08:00:00.004-06:00

the forgotten skill

2011-02-08T23:19:00.000-06:00

I was just talking to a friend the other day about Vinny's forgotten skills....clapping and signing more...

So I was slightly surprised tonight when I looked over at him in his highchair clapping.

I guess it is really not a forgotten skill!

A great reminder for me to be patient!

Miller

2011-02-07T21:55:00.000-06:00

Miller (1998-2010)

The Rainbow Bridge
inspired by a Norse legend

By the edge of a woods, at the foot of a hill,

Is a lush, green meadow where time stands still.

Where the friends of man and woman do run,

When their time on earth is over and done.

For here, between this world and the next,

Is a place where each beloved creature finds rest.

On this golden land, they wait and they play,
Till the Rainbow Bridge they cross over one day.

No more do they suffer, in pain or in sadness,

For here they are whole, their lives filled with gladness.

Their limbs are restored, their health renewed,

Their bodies have healed, with strength imbued.

They romp through the grass, without even a care,

Until one day they start, and sniff at the air.

All ears prick forward, eyes dart front and back,

Then all of a sudden, one breaks from the pack.

For just at that instant, their eyes have met;

Together again, both person and pet.

So they run to each other, these friends from long past,

The time of their parting is over at last.

The sadness they felt while they were apart,

Has turned into joy once more in each heart.

They embrace with a love that will last forever,

And then, side-by-side, they cross over… together.

I loved this little dog....even though he did irritate me some. He was a funny little dog.

He loved to sneak out of the house and head to the trail out back and scout out rabbits...he would always return at some point....

He just had to place his mark on almost everything...

He "owned" our cats and other dog Salli.

He always had to announce to the house when there was someone at the door or walking by.

He was a good snuggle dog!

And tolerated so much from the boys!

Avery and Leo were with me at the vet today when he was sent up to heaven. It was an amazing life experience for them!

I will miss you "Little Dude"!

green

2011-02-02T22:33:00.000-06:00

They are new...

green...

plastic...

non-breakable (his last pair he broke)...

and they are kind of funny looking....

but Vin can make anything look cute...right?

it shall pass

2011-01-23T21:07:00.000-06:00

"Time cools, time clarifies; no mood can be maintained quite un-altered through the course of hours." ---Thomas Mann

I have gotten a lot of kind words the past few days through email, comments and Face Book....

I appreciate it more than all of you will ever know!

Sometimes I find myself feeling guilty for feeling sorry for myself and having my "moments", especially since there are so many others out there that are going through more than me!

But I have come to the conclusion not matter what it is that bothers each of us, be it a a loved one being sick, a loved one dying, a bad day at work, a car that has broken down, a crappy pay check, or whatever it may be......................

It is all important!

One thing doesn't trump another...

It is what is important to you at the moment...

I have somewhat figured out that when I have my "moments" I just need to let time pass, cry, spend time with friends and family, and STOP thinking to much! That is what gets me in trouble...my mind....sometimes I think I make life way more difficult than what it has to be!

I am currently feeling great, had a massage, spent time with friends, went to a movie, drank some wine, and spent time with the boys dancing and being silly! Just what I needed!

Bring on the new week!

"You are only one thought away from a good feeling."----Sheila Krystal

a moment...

2011-01-19T21:58:00.003-06:00

...yep that is what I am having a "moment"....

I'm going to admit it and put it right out there!

I am a strong person and can handle almost anything that comes my way...

But sometimes it all just surfaces and I have a "moment"...

So for the past few days a "moment" is what I have been in. A funk, feeling sorry for myself, or whatever it is you want to call it.

I hate it when everything just sneaks up from behind and rears it's ugly head right in my face!!!

It can be little things (the cat peeing on the dog bed to automatic door at Walgreen's not opening fast enough for me)...

It can be bigger things (like Vinny's friend Ella Grace struggling for her life (please pray for her and her family) to Vinny starting preschool)...

I have read many "feel good, self help" books, I have gone to counseling, I have talked to many friends who have all been through something similar to what I have been going through...I have tried all of the strategies and suggestions!

But damn it!

Sometimes they just don't work!

So I am going to be OK with just sitting here having my "moment"...

Cry, feel sorry for myself, have a headache, and drink my red wine!

I know tomorrow will be a new day...

I have many reasons to feel blessed and many people to be thankful for in my life!

I know one thing for sure...

I look forward to waking up to 4 beautiful faces!

he's coming back....

2011-01-16T23:07:00.000-06:00

I am so relieved that the "gomboo" only last several days!

As you can see...

The Vin is coming back nicely...

He has begun acting silly again...

Smiling...

Belly laughing...

And just being happy!

Don't get me wrong...he is not 100%...

He can throw some big mood swing fits!

Vinny has began tolerating food by mouth again and has not puked for one whole day!

We are on the up and up!

Bring on the new week! I am ready!

gomboo

2011-01-13T23:29:00.000-06:00

It has reared its ugly head in our house again! Well actually it has been around for the past month or so...

I have been doing my best to keep it away from my littlest!

Hand washing...

Purell...

"No touching"...

"Kisses on the head only please!"...

"Don't touch his hands"...

"Cough in your arm not your hands"...

Lysol...

It officially has been through all of my boys now! The damn "gomboo" has hit my Vinners the hardest!!!

It takes a lot to knock this little guy down...

He has such a high pain tolerance...

He will sleep anywhere (like on the counter with the boys screaming and running around)...

No fever, just lots and lots of puke! I am NOT kidding a TON of it!

Anything that goes into his mouth or belly (through g tube) comes out almost immediately!

Day and night...

Let's just say my washing machine has been running pretty much non stop the last few days.

No giggles, no belly laughs, no smiles!

Just lots of cuddles and snuggles!

I finally decided to take him in to our fabulous pediatrician!

Vinners has a raging ear infection and the blasted damn stomach gomboo that everyone else has had!

When Vinny gets sick it seems like it is ten times worse than the other boys...

I worry about dehydration, calorie and weight loss...

He did actually lose a pound which is major for CdLS kiddos!

My stess level and worries go crazy! I can't think straight, problem solve (Pedialyte, stopping oral feeds, etc...). But I guess that is what doctors are for?

I left the docs office with a hand written menu of a specific regimen to follow with Pedialyte, formula, and foods for the next three days (thank you Dr D)!

Poor Vinners left the docs office with an ear full of ear drops, a shot of antibiotic in the leg, and an enema up the wazoo and a prescription for an oral antibiotic!

I know it was only a matter of time for the "gomboo" to hit our house...especially this time of year!

If you have a few extra seconds, please pray for all of Vinny's CdLS friends! It seems like so many of these little one's are getting sick right now!

I look forward to the smiles, giggles, and belly laughs!

9

2011-01-12T22:56:00.000-06:00

Interview with a 9 year old

Best thing in the world: Nebraska football

Favorite game: Ball tag

Animal I'd like to be: Bald Eagle

Favorite movie: Despicable Me

Skate boarding or bike riding: Bike riding

Worst subject: Math

Best subject: Science

Best ever present: X Box

Spots or stripes: Stripes

Favorite sandwich: Subway turkey and cheese

What do you collect: Bouncy balls

Wants to be: Doctor

Best thing I've found: Two dollars

Most ticklish: Stomach

Favorite word: Huskers

Worst food: Vegetables

After school enjoys: Snuggling with my mom

Hidden talent: Snowboarding

Favorite book: Diary of a Wimpy Kid

Favorite person to be with: My brother Vinny

Best thing about being 9: I am one year closer to double digits (10)

Happy Happy 9th Birthday Avery!

I LOVE you more than you will ever know...

jammin

2011-01-10T21:51:00.002-06:00

That is exactly what the boys and I did at the Monster Jam truck show this weekend...

Jam out with the Monster Trucks!

This is the first time that I have been to one of these events and I hate to admit it, but it was actually fun! I enjoyed watching the boys get all excited about these big ole' monster trucks!

I think we will make this an annual event.

We had awesome seats with great natural lighting by some big windows....

Of course I had to take some photos...which was like pulling teeth because the boys had other things on their minds :)

But I just can't pass up great natural light!

Frankie had so much fun, he just couldn't stay awake on the ride home...

We had a busy fun weekend with a lot going on! Check back for more posts about our weekend! Have a great week! Oh and I think I need to do an Vinny update too.

Marshmallow Kingdom

2011-01-07T00:26:00.003-06:00

I just ran across an article in the Omaha Magazine recently on this book. The author Louis Rotella III is from here in Omaha. The following is an excerpt from the website.

“The Little King” is about my wise and funny sage (and son), eight-year-old Louie Rotella the IV, who was born with Down Syndrome.

I wrote this book because I wanted to give children—and their parents and teachers—access to some of the lessons, and all of the laughter, that Louie brings into my life and that of everyone he meets.

“No kid is exactly alike. But we’re all kids. Right?”

Profound thoughts surface while admiring floating bubbles that, too, are not exactly alike – a child’s delight at the diversity of his world. “The Little King And His Marshmallow Kingdom” documents the simplicity and wonder of the world around an eight-year-old child with Down Syndrome and his comfort with his place in it. King Louie has the gift of experiencing the joy of life without the filters that society, over time, teaches us to put in place. This book is a testament to “certain truths that very young children know instinctively: until they’re taught otherwise, they know that ‘normal’ is overrated.”

Consider the opportunity this beautiful and gentle tool offers to pass on this underlying philosophy: at home, in schools, youth groups, daycare facilities, any learning environment. The message in this book encourages children to be themselves with confidence and challenges those social pressures to conform.

To learn more about The Little King and His Marshmallow Kingdom, click here.

Christmas is over...

2011-01-02T22:38:00.000-06:00

...and we had so much fun!

This is the first year that Vinny actually engaged in all of the festivities!

Everyone got what they wanted...

...and had fun enjoying each other's presents

...Frank is now "Dr Frank"

loved watching Vinners actually take interest...

I think he actually ate a whole roll of wrapping paper when all was said and done!

Leo and his Iron Man gear...

Avery got his dirt bike helmet....

He was so excited for Christmas this year!

Vinners chilling out in his stander...

He takes his job VERY seriously!

I think he loves his new laptop...

....and on to the New Year!

wordless wednesday

2010-12-28T22:37:00.000-06:00

This makes it all worth it!

Scoobie

2010-12-23T23:19:00.002-06:00

He's been here...

He's been there...

He's pretty much been everywhere!

Thank you Scoobie for once again continuing a great Christmas tradition! To read more about Scoobie and his elves click here.

My little Santa helping me wrap...

Frankie has been so much fun this year....he is really into Scoobie and Christmas!

I have to admit, it has taken me a little while to get into the Christmas spirit....I think I finally have it! I am looking forward to all of the festivities planned over the next few days!

Have a Merry Christmas!

Maybe

2010-12-19T00:53:00.002-06:00

Maybe- Sick Puppies

Maybe I'm a dreamer

Maybe I'm misunderstood

Maybe you're not seeing the side of me you should

Maybe I'm crazy

(Maybe I'm crazy)

Maybe I'm the only one

(Maybe I'm the only one)

Maybe I'm just out of touch

Maybe I've just had enough

Maybe it's time to change

And leave it all behind

I've never been one to walk alone

I've always been scared to try

So why does it feel so wrong

To reach for something more

To wanna live a better life

What am I waiting for?

'Cause nothing stays the same

Maybe it's time to change

Maybe it's hopeless

(Maybe it's hopeless)

Maybe I should just give up

What if I can't trust myself??

What if I just need some help?

Maybe it's time to change

And leave it all behind

I've never been one to walk alone

I've always been scared to try

So why does it feel so wrong

To reach for something more

To wanna live a better life

What am I waiting for?

'Cause nothing stays the same

Maybe it's time to change

And maybe it's time to change

And leave it all behind

I've never been one to walk alone

I've always been scared to try

And maybe it's time to change

And leave it all behind

I've never been one to walk alone

I've always been scared to try

So why does it feel so wrong

To reach for something more

To wanna live a better life

What am I waiting for?

'Cause nothing stays the same

Maybe it's time to change

'Cause nothing stays the same

Maybe it's time to change

the excitement builds...

2010-12-16T23:51:00.001-06:00

This is such a fun time of year for the boys!

They are so full of excitement and energy...

Decorating the tree is such a big job!

I can not tell you how many times they have moved ornaments from branch to branch...

Just to find the perfect spot...

Only to move them the next day...

This is the first year that NO one has cried sitting on Santa's lap...

I love this pic how Santa has his arm around Frank and how Frank is holding on tight to Santa!

Not quite sure how Vinners felt about the whole experience...

He still wasn't sure even when we made Santa hold Vin for a picture...

eye spy the "dog cat"

2010-12-15T21:21:00.001-06:00

Can you find the "dog cat"?

the joys of boys

2010-12-13T00:24:00.000-06:00

My friend Liz posted this on Facebook tonight. Thought it was worth sharing here. Just a snippet of the article.

The Joys Of Boys

Danille Bean

Conflict

I have to admit that there's a refreshing simplicity about the way that most boys handle conflicts. We girls tend to verbalize our disagreement, hint at our displeasure, and when all else fails, resort to good old fashioned passive-aggressive behavior. We are wonderfully complex in that way.

But boys don't have time for any of that nonsense. If they need to, they fight. I say "fight", but it is true that we girls call "fighting" most boys would call simply "working it out", if they were at all inclined to describe in words what they do.

I observe it in my living room on a daily basis: Two boys scuffle. They shove, wrestle, and occasionally punch. This is fun. This is recreation. This is a good time.

At some point in the action, one boy shoves or punches the other boy a bit too hard. This is a foul and must be dealt with. They work it out--by shoving and punching, of course. The action gets intense and female onlookers are inclined to verbalize their concern, until one final punch is answered with another decisive punch.

It is settled. All is well.

"Wanna go play ball or something?" one of them asks. "Sure" the other shrugs, and they are on their way. Leaving their baffled, bemused, and always-learning mother alone with her thoughts and prayers for the grace of understanding.

I am so thankful God gave me boys!

therapy

2010-12-08T00:06:00.003-06:00

Therapy can be hard work and it can be fun!

Just depends on...

the day...

the mood...

the activity...

Today Vinny found therapy....

to be quite enjoyable...

interesting...

and amusing...

he decided everyone should be involved!!!

(notice the flying noodles)

Thanksgiving and vacation

2010-12-06T01:35:00.000-06:00

I was fortunate to spend a wonderful 7 days in Orlando (including Thanksgiving) with some of my favorite people!

It was a well neeeded break from the stressors of life!

We went to several of the Disney parks...

Don't ask me what the boys were doing in this picture???

One of our longtime old friends joined us for an incredible day at Magic Kingdom...

Bless Andrea's heart for enduring almost ten hours with us!

The castle was so magical this time of year...

Leo was SO into it and just had to walk through the castle and the big gates...

The kids enjoyed dancing with all of the Disney characters (ok I did too)...

Poor Leo did not know what he was in for on half the rides we went on! Space Mountain was one of our favorites! Poor kid, we made him go on it twice!

Olivia...thought that plugging her ears would make the ride less scarier?

One of our days in Orlando, we went to Animal Kingdom...

A favorite there was the Safari ride...

We got to see many different animals in their natural environment...

Always trying to capture a "decent" picture of the kids... (ya right)

The kids loved measuring Leo to see if he was tall enough for the rides...note him standing on his tip toes...

This was probably one of my favorite days...relaxing by the pool all day...

read several books....

had a few glasses of wine...

enjoyed watching the kids swim...

The boys loved flying! They don't remember the last time they were on a plane...

Avery had to draw the plane and engines...

Leo spent his time eating of course!

Franks and Vinners got to spend a weeks vacation at grandma and grandpas house!

Frankie did not care that he was missing out on Disney, but was more excited that he got to spend so much time with his grandparents...

Vinny became really spoiled with one on one attention...

I missed both of my boys so much and was so happy to see both of them.

The best part of returning home was going to get them and reaching out to pick up my Vinners and he smiled a big toothy grin at me!

I so loved being on vacation and away from every day worries and stressors!

But a little part of me is glad to be back home and into the "routine" of our crazy life!

magic

2010-12-02T13:16:00.003-06:00

It was sure fun!

Halloween

2010-11-04T22:59:00.000-05:00

my crazies...

2010-10-22T21:41:00.001-05:00

Here is just a little glimpse into our life lately!

These boys make me smile!

"There's A Hole In My Sidewalk"

2010-10-21T23:18:00.000-05:00

"There's A Hole In My Sidewalk: An Autobiography In Five Short Chapters"

By Portia Nelson

Chapter One

I walk down the street.

There is a deep hole in the sidewalk.

I fall in.

I am lost...I am helpless.

It isn't my fault.

It takes forever to find a way out.

Chapter Two

I walk down the same street.

There is a deep hole in the sidewalk.

I pretend I don't see it.

I fall in again.

I can't believe I am in this same place.

But it isn't my fault.

It still takes a long time to get out.

Chapter Three

I walk down the same street.

There is a deep hole in the sidwalk.

I see it is there.

I still fallin...it's a habit...but,

My eyes are open,

I know where I am.

It is my fault.

I get out immediately.

Chapter Four

I walk down the same street.

There is a deep hole in the sidewalk.

I walk around it.

Chapter Five

I walk down another street.

After A While

2010-10-17T23:07:00.002-05:00

After A While

Veronica A. Shoffstall

After a while you learn

The subtle difference between

Holding a hand and chaining a soul

And you learn that love doesn't mean leaning

And company doesn't always mean security.

And you begin to learn

That kisses aren't contracts

And presents aren't promises

And you begin to accept your defeats

With your head up and your eyes ahead

With the grace of a woman

Not the grief of a child

And you learn

To build all your roads on today

Because tomorrow's ground is

Too uncertain for plans

And futures have a way

Of falling down in mid flight

After a while you learn

That even sunshine burns if you get too much

So you plant your own garden

And decorate your own soul

Instead of waiting for someone to bring you flowers

And you learn

That you really can endure

That you are really strong

And you really do have worth

And you learn and you learn

With every good bye you learn.

The Special Mother...

2010-10-12T22:25:00.000-05:00

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...giver her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Celcelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

And what about her Patron saint? asked the angel, his pen poised in mid - air.

God smiles, "A mirror will suffice."

This has been going around on Facebook...I love it! Thought I would post it for you to read and enjoy!

a round of applause!

2010-10-09T23:02:00.004-05:00

perseverance

2010-10-04T23:33:00.007-05:00

per·se·ver·ance

steady persistence in a course of action

a purpose

a state, in spite of difficulties, obstacles, or discouragement

continued steady belief or efforts

withstanding discouragement or difficulty

persistence

Perseverance commonly suggests activity maintained in spite of difficulties or steadfast and long-continued application

Endurance and perseverance combined to win in the end.

This kid will NOT give up!

Definition taken from Dictionary.com

a new skill

2010-09-27T22:29:00.003-05:00

We have been hard at work helping Vinny develop many new skills!

Can you guess what he has been working on?

Vin is just now putting it all together...

After months of practice...

He thinks it is quite fun!

He is working so hard...

And gets so excited when he figures it out...

Vinny reminds me to get excited over the little things!!!

♥ He makes me so proud ♥

Come back soon to check out another new skill (I am trying to get it on video!)

2 beautiful souls

2010-09-19T22:45:00.003-05:00

Today I feel so blessed to finally get to meet two beautiful little souls!

These two little ones have touched SO SO many lives!

First I will tell you about Evie...

Evie is the daughter of my friend John and Lindsey...

Today she turned 1!

This little girl was not supposed to live even minutes after she was born...

She has such an AMAZING story!

Click here to read about Evie's journey...

Check out her lashes!

And those eyes...

Evie is so beautiful!

This is Judah!

He is such a little butterball!

I have been following his mom's blog since he was born...

It just so happens that his mom and Evie's mom are friends!

I was so hoping that I would run into Judah's family today at Evie's birthday party.

It is so fascinating to me how meeting other parents of special kiddos how there is that instant bond!

We never expected to be the parents of special needs babies, but for some reason we were chosen!

And when meeting those parents it is unbelievable how there is that instant connection!

They just understand!

Doesn't he just melt your heart?

Hoping you all have a fantastic week!

Our butterflies...

2010-09-18T22:56:00.000-05:00

The story of the Butterfly
Posted by Renee Burton Charlan on Sep 17 2010 and posted on Exceptional FamilyTV

A man found a cocoon of a butterfly.

One day a small opening appeared.

He sat and watched the butterfly for several hours

as it struggled to squeeze its body through the tiny hole.

Then it stopped, as if it couldn't go further.

So the man decided to help the butterfly.

He took a pair of scissors and

snipped off the remaining bits of cocoon.

The butterfly emerged easily but

it had a swollen body and shriveled wings.

The man continued to watch it,

expecting that any minute the wings would enlarge

and expand enough to support the body,

Neither happened!

In fact the butterfly spent the rest of its life

crawling around.

It was never able to fly.

What the man in his kindness

and haste did not understand:

The restricting cocoon and the struggle

required by the butterfly to get through the opening

was a way of forcing the fluid from the body

into the wings so that it would be ready

for flight once that was achieved.

Sometimes struggles are exactly

what we need in our lives.

Going through life with no obstacles would cripple us.

We will not be as strong as we could have been

and we would never fly.

So have a nice day and struggle a little and teach well.