preschool

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!

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

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

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

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 ♥

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

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!