Our double blessings

Christmas. belated

2012-01-27T21:25:00.001-05:00

Better late than never?

Getting ready for Christmas:

No, our house NEVER looks this good,

not with two-two year olds.

A lot of pushing this stack of toys out of view,

throwing the pillows back on the couch,

stacking up the books and blocks and hiding in the bin,

quickly picking up the miscellaneous toddler sock,

briefly wondering where its partner went to......

and tada.......

living room beautiful.

Now hurry and take the picture

because it only lasts a minute or if your really lucky,

til the next day when you do it all over again....

CHRISTMAS COOKIE CUT OUTS:

Not just a photo op,

Boys are very lucky.

Their Daddy is not at all opposed to be in the kitchen.

He's actually the one who taught ME how to cook

and he's a much better cook than I'll ever be.

mixing up the frosting

sampling....

Alex manages to just lick all the frosting off,

leaving the cookie intact.

showing each other the "mess" on their faces

..................................

Admiring the tree......

or...wait.....aren't there supposed to be presents under here?

Mr. cool

I know, I know

How cute am I?

Okay so its not sooo hard getting cute pics of one

but both boys at once has always been a bit more challenging......

Hope you had a VERY Merry Christmas.

We ofcourse are richly (doubly) blessed!!!!!!

New House

2012-01-27T15:01:00.001-05:00

so I started this blog months ago, when the weather was still warm.

didn't get everything so will add a few more pics to this as well...........

Here it is:

The driveway is a little steeper than we hoped but other than that we are very happy.

The builder made sure to grade the garage flooring right up to the door to get in the house and our landscaper did the same for the front walk/front door area. We are fortunate to live at the end of a quiet street and on a cul de sac so its the perfect place for the boys to ride around.

We have really one large living space.

our foyer, living room, dining, kitchen all connect.

I don't have a great pic of this yet, but

Here is our living room all decked out

for show and tell. It would be lovely if it could always look like this.

our bedrooms and baths are on each side of the house

This is the roll in shower

Mr. Man loves to help clean the floors.

Here's Mommy's soaker tub :)

A little back breaking right now leaning over to wash the babes

but someday it will be ALL mine :)

For now they like it too.

Front door. (obviously)

Gate is for open staircase that goes to basement.

extra wide stair case for a stair lift if we need one someday.

Alex lOVES zooming around.

extra low windows

carpet in bedrooms for now for crawling

but low piling so Alex can still wheel around without too much effort

Negligent

2012-01-27T14:51:00.005-05:00

I've been sooooo negligent with this blog, I've had several friends write me over the last month asking how the boys are and if I was stopping the blog. Nope, just been very blog lazy.

I promise I'm doing the important part now: uploading the pics as we "speak".

Here's a quick rundown of what we've been up to:

We LOVE, LOVE, LOVE our new house/neighborhood. I've had several people ask for pics of the new digs (especially people interested in one story/more accessible plan) and I've been terrible about that. I realized I had started that blog months ago with some pics so here it is for any one interested.

Not everyone with mobility issues can just build an accessible house I realize, we were blessed that we had enough equity in our first home and savings to make it work. Remember savings? Ha, one of the very few benefits of taking soooo long to have kids. Anyway, we obviously couldn't do everything we had wanted to do accessibility wise but we tried to do the things that would be very hard to modify later on. There's really not one space that Alex can't get into (good/bad for an almost three year old, ha,ha) and he just zooms around everywhere, often "racing" his brother.

I spoke about growth concerns awhile ago here. We really still don't have the answers. We've met repeatedly with a nutritionist and modified his diet as much as possible given all of his food allergies to maximize calories but also nutrition. All of these months he has hovered right around 18 pounds despite the diet changes and JUST recently jumped up to 20 pounds but has not budged from his 27 inch length in many, many months. Spina Bifida may play a small role in his stature but all the doctors that we've talked to say that wouldn't just make him stop growing. He's approximately the size of a one year old. A VERY cute one/almost three year old in my oh so biased opinion.

Nicholas is a whopping 22 pounds and 33 inches tall. He's also not even near on the growth charts, even if you subtract the three months he came too early but at least he's still making gains in height and weight. We know our children will be little. Hey, we've checked the mirrors, they didn't get the tall genes for sure.

Alex has went for all the growth hormone and other endocrinology testing and although he was on the low side of a couple numbers, he was not deficient in any one area. His skeletal age was consistent also with his chronological age. We have the option of growth hormone treatment but we are trying to give him time to see what his body can do. There are no guarantees that growth hormone treatment would even work for him and as with everything its not a magic bullet without potential consequences. Heck, both boys were even slowing their growth in the womb (IUGR) and studies for using growth hormone treatment in children who began life this way and without clear growth hormone deficiency are not inspiring to say the least.

Alex's orthopedic doctor would like us also not to rush into this given his cervical scoliosis and the possibility that if he were to have a quick growth spurt, how it would impact his scoliosis. We have been prepared that its not a matter of IF he has to have spinal fusion surgery but WHEN so...........well there's a lot to ponder. I said this would be a quick update, huh? okay.....next......

Holidays were wonderful. There's lots of photos coming. The boys really got into it this year. Visiting family and friends, cookie baking (and eating ofcourse), seeing Santa although not sitting WITH him, ha,ha, picking out their first ornaments for the tree, opening gifts, etc. Watching the excitement through their eyes really renews it for me as well.

The only downside to the holiday time: managing it during cold/flu time. Our household has been hit with truly every virus that passes through. No exaggerating the boys have been sick AT LEAST twice of every month since August without exception. Each illness tends to last at least a week. We have missed multiple family functions and get togethers with friends due to all of this. We even missed our own Thanksgiving dinner due to boys having Bronchitis and being at urgent care, and the day after Christmas Alex was admitted to the hospital for Pneumonia. Really this year has been exceptionally hard in that regard.

I think I've been spared two of the viruses, otherwise I've gotten them as well so I don't understand the idea that the little ones have to build their immunity. Is my immune system on some extended vacation? If its somewhere warm and sunny, can I go too? okay enough whining.

There has been tons of happy stuff going on too. The boys are taking a "scribble/scramble" class each week which is really just a fun time to get messy with paint, glue, and then run/wheel around with their peers in a big open gym space. We are also starting a weekly swim class on weekends to get them used to the water.

Oh and they are talking, talking, talking..........sometimes its in the things that we have to wait for that are the sweetest sounds. I LOVE LOVE this stage. Where the boys are figuring out and sounding out words, making the connections to things, how to ask for things. Their little voices, oh love. Nicholas has about 100 words now and is really just taking off figuring out new words every day. I've never been a fan of shortening his name even though I know its almost a certainty that others will call him by that at some point. To me he will always be "Nicholas." However, there is something sooooo adorable hearing him trying to say his name even when he shortens it himself. He laughs when I call him by his name and tries to correct me and says "NICK". Argh. His favorite word/name is still one of his first ones: "Alex". Ofcourse he says it more like "ALE-UH". First thing he says when he wakes up and just about last thing he says at night. Over and over to get his attention, especially if Alex is trying to sleep. He is really crazy about his brother.

Alex is just starting to finally be verbal as well. He has maybe 30 words plus his sign language. He even made up his own sign for "wheels". It looks like he's asking to rev his motorcycle, ha,ha. He has just figured out how to say his brother's name and it sounds so sweet: "Nick-uh". But by far his favorite word is: Noooooooooo. And he SINGS it puckering up his lips as he does it. I'll have to get that on video before he stops it. He just KNOWS he's cute.

Okay the most recent news is that we have toured preschools for the fall. Can you believe it? Okay well maybe YOU can. I however am having a hard time thinking that my boys are almost three years old. I've never understood the statement "where does the time go" more than since I've become a parent. sigh. I feel relieved that we have already fallen in love with one and that the boys will be able to stay together. It will really be the first time that they have been away from me on a regular basis. They have a wonderful integrated program where Alex can have access to all kinds of adaptive equipment/toys, he'll be able to get all of his therapies in one place, and the playground looks wonderful and can play right alongside his brother (if he wants to that is). I'm struggling with the idea of it being 5 days a week. I guess I thought three year olds would be more like 3 days a week. Its 9:30-12:00 every day. It just feels like a lot to me right now but maybe by September it will feel different. Either way I'm sure the boys will be even more ready than their Momma is.

Trick or Treat

2011-11-24T14:34:00.002-05:00

We might be a little late on posting

but trust me, these pictures are all TREATS.....

Boys: hmmm whats in here?

Alex: yuck!

Nicholas: lets just put that right back on

Decorating their room for Halloween

(thank you Grandma and Papa

for the stickers---which by the way

is Nicholas' new favorite word)

The boys also loved helping decorate outside.

We even found some new "friends"

Alex: "Hi there" whats your name?"

Looks like you need some new shoes

Here, take mine.

I don't like to wear them anyway

Nicholas: Hey your just my size

hmmmm. is it a little drafty here?

maybe you'd like to stand closer to the door?

next to the other guy maybe

whoops....man down......

okay lets try back over here

................back at the ranch...............

Having a little pre-halloween fun

Alex: yep he's my brother

a little bit crazy.

Is it genetic?

no, why? do I look concerned?

Halloween at my Daddy's work:

Darth Vader (a.k.a Alex)

Let them guess who I am supposed to be

I don't want to wear the hat.

Alex: I am your father (ha,ha)

don't worry

we don't take candy from guys like this usually.

Mama says this is an exception

because the scary looking guy?

He's my dad.

(yep really, he even won a contest and everything)

Yoda: Is this all the candy then?

okay I'm outta here!

Halloween Night:

Alex was very anti-picture this day.

Here we are with all of our friends

I think some people gave my daddy

some concerned looks....

our first time trick or treating.
I didn't know what to expect

Really? all you do is knock on peoples doors and they give you candy??

Nicholas: WAIT where's winnie the pooh going?

oh there's more candy?

wait for me

This is GREAT!!!!!!

Best friends come in all shapes and sizes......

and species

Nicholas struggling to carry his trick or treat bag its so heavy :)

Alex not scared of his Daddy,

Collar and all :)

Happy Halloween!!!!!

Awareness

2011-10-27T13:04:00.000-04:00

It's Spina Bifida awareness month.

Many of us parents have been fortunate enough to find each other on line after learning there was something "wrong" with our babies. We desperately search out more information and we have been blessed to find each other. But more and more lately we are learning of people who didn't find us first, who only heard outdated or false information about children born with Spina Bifida and they make life altering decisions based on this.

I hear these stories over and over and its heart wrenching. What if I didn't have my faith? What if I believed all of those "predictions" told to me by all the professionals with "MD" after their names? Would I have "spared" my son, and the world of him? I can't imagine a world without him in it!

I wish my voice was louder, to scream from the roof-tops so any parent hearing those first words wouldn't feel so alone. They would instead maybe think "okay, I've heard of Spina Bifida, I've seen pictures, heard stories of incredible people living very full lives and I think we can do this". or at the very least, "lets get more information."

Collectively us as parents, grandparents, aunts, uncles, friends, we can DO something to spread awareness, educate. I will use what resources I have to these means. blogging, facebook, conversations at playgrounds, doctors offices. I ask that any one reading please do the same.

Another incredible mother summed it up so well:

"Spina Bifida shouldn't be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears "I'm so sorry -there is something wrong - your baby has Spina Bifida" feels those things. Every pregnant mother who is left with the decision on whether or not to terminate her pregnancy based on a horrifying description of the "poor quality of life" their child will have - feels those things. And it's not only because we are overwhelmed with a diagnosis we didn't expect - it's because we are UNAWARE. We are uneducated, unprepared, unaware of what Spina Bifida really is. What it looks like. What it means for our children. What it means for our futures. We overlook what it CAN be because of what we FEAR it to be. Don't let Spina Bifida continue to be like a ghost in the shadows - shine the light on Spina Bifida. Be aware of the research surrounding it, the miracles born with it, the people who live with it, and the many who strive to REDEFINE it." -Joanna Penny

Alex is being featured in several blogs and articles. Check him out as well as some other very inspiring people!!!

http://simplysoares.blogspot.com/2011/10/spina-bifida-awareness-meet-alex.html

Brotherly love

2011-10-08T14:58:00.000-04:00

Alex narrating this post.

I know you've probably been wondering what we've been up to.

Momma means well but she just hasn't been good at regular updates.

I guess I'll have to take charge.

Here's my brother Nicholas.

He's going to LOVE me for sharing these when he's older, ha,ha.

He loves beads right now.

He's looking for more in his purse, ahem, I mean "bag"

Here he is trying to ask Momma for one more

thats how it always starts, right? always needing just one more.....

oh me? nah, I don't care much for the beads

well at least I know enough not to get caught!!!!

I'm on the go, go, go

Momma says I have stronger arms than her

AND Daddy

oops, maybe I wasn't supposed to say that last part?

well anyway, I'm figuring out how to do LOTS of stuff

all by myself.

hmmmm. a cold beverage after a hard days work......

ahhhhhhh

Here I am drawing

which I like a lot right now

But I REALLY like

watching the chalk roll down the driveway

and making my Momma

exercise!!!!!

Momma says I'm more of the thinker,

take it all in kind of a guy.

My brother goes on and on

he's saying words like "more", "Elmo", "wheels"

and he LOVES saying my name over and over and over

especially when were supposed to be sleeping.

It sounds like "A-L-A"

I guess he can't figure out the "X" part yet but my parents

think its really cute or something.

I"m more of the strong silent type

but I am rivaling my brother in the squealing/singing department

Especially when my brother is trying to sleep during naptime he,he

my Momma says my brother tends to be the more wild and crazy one

He's got lots of energy

I definitely agree with the "crazy" part

For the record: this is the ONLY time

I let my brother push me around.

I actually prefer when HE does the pushing

rather than my Momma

I like to go FAST!!!!!!

Yeah, he's okay.

I guess we'll keep him!

Momma still working on getting a good photo

this is as good as we'll give her together

for now......

I don't mind posing for the camera,

solo at least

some random favorites:

oh here I am walking Grandma and Papa

They need their exercise you know (he,he)

and here's a pic of our best buds

A little weird how we all look alike, huh?

(oh I asked Momma and she said I was at the store

with Daddy during these pics).

Nicholas is in between the "other" twins, Matty and Ben.

Christopher is the "big" brother on the left.

He's FOUR!!!!!

This is our favorite hangout.

we get together at least every weekend

Momma says we point at their house

every day to go play.

she says we've all been very best (blessed?)

to have such good friends.

we like just hanging out playing

but we go a lot of fun places too.

we're quite a good looking crew, right?

Here we are at Strong Museum

with our best friends

The "other" twins are on the ends

Ben is on the left. He's the other crazy

in case you couldn't tell.

He and my brother get along GREAT

Matty is on the right, he likes to give me hugs

Christopher is the "big" brother.

Did I mention he's FOUR?

I can't WAIT to be FOUR

oh whats wrong with Nicholas you ask?

He might have spotted HIM about this time.

.....

What the heck IS this thing??????

Momma says I should leave you with one

more giggle......

I am an overachiever

so I'll leave you with TWO

the boys

2011-09-08T21:11:00.000-04:00

WHAT? Daddy got Mama a new camera for her birthday?

you know what that means, don't you?

(yep, lots more pictures)

wait, maybe if we just give her a couple smiles,

she'll stand down.

Nicholas: I can't look anymore,

the light, the light.

Is she still there?

Nicholas: okay I'll distract her

you make a run for it.

save yourself, save yourself!!!!!

Alex: I thought you said she wouldn't find

us in here?

(these were not from the new camera,

just iphone)

and even when the pictures aren't clear

the love is

Alex finds he doesn't really mind

hamming it up for the camera.

Nicholas doesn't generally stay still long enough

for the camera.

I have LOTS and lots of

really cute blurry Nicholas

photos because he's always on the go.

that is until I find him props.

right now, he LOVES hats!

even if they are last years winter hats

that don't quite fit.

Doesn't matter that its still September

and 70 degrees

He wants to be prepared

REALLY prepared

If one hat is good,

two must be GREAT!

He's upset that the hat will not stay on.

so he's trying to hold it in place

Shirt says it all :)

Random cuteness

2011-08-19T14:36:00.002-04:00

I have a running screen saver on my lap top that scrolls through random pictures of the boys.

Throughout the day whatever I'm doing, I pause to look at it.

Some pictures just stop me in my tracks.

Reminders of another place and time

how quickly time passes.....

how far we've come in two "short" years......

Alex sporting his nasal canula "headband"

I take pictures all the time

I can't stop myself

the boys will be doing something cute or just looking cute

and I think where the heck is my camera?

I don't always get it in time, rarely these days since they are soooo busy

but I try

because I know some day I'm going to be thinking

"remember when?"

"and where is that picture of....."

so now I'm renewed to document more

even when my brain doesn't seem willing to really put a "real" blog together.

at least try to get more of the pictures up.

who really needs more than just the cute pictures anyway?

Potato chips for the first time

at Daddy's company picnic

Alex sniffing it first

our future's so bright

gotta wear shades.......

hamming it up with friends

and family.....

Boys LOVED their time with Aunt Paula

GOTCHA:

A rare "still" Nicholas

it helped that he was belted in :)

most pictures these days are blurry Nicholas,

running off to do the next thing or hanging on his Mama

trying to see into the camera

so this beautiful picture is a gift indeed!

favorite thing right now:

climbing!!!!

Not TOO proud of yourself, are ya buddy?

Alex doing his favorite thing right now:

dancing :)

Fly me to the moon.....

Because we are easily entertained.....

coming to get YOU....

and some self portraits of Mama and boys.

I prefer to be BEHIND the camera

but I understand some day you might just want these

Failure to thrive?

2011-08-03T13:49:00.010-04:00

Failure to what now??? That was kind of my surprise when we visited the GI specialist last week with the boys. I thought it would be a quick 15 minute trip but turned into a two hour sit and figure out what to do next.

Both boys were diagnosed with "failure to thrive". This is apparently a fancy term saying that the child is not growing as expected. Seriously, who makes up these terms? you couldn't think of another way to say underweight/underheight? Well that will be another discussion.

Neither boy has ever even been close on the growth charts, not even when you subtract the three months that they came early. Not even close. But apparently Alex has fell completely off even his own curve. Now instead of going up or even hanging on to his own growth curve, he has taken a downward turn in both height and weight.

I guess I'm still pretty surprised. The boys (knock wood) have been so healthy. Yes I know that they are little, very little but what do you want when they came at just over a pound and a half in this world.

I guess I was thinking they've GAINED a solid 18 pounds since birth, thinking that was enough. Lets face it, their daddy and I are not giants so they were never ever going to have a chance to see the top of the growth chart, maybe not even the middle.

Ofcourse when ever you hear "failure" related to your child, you automatically feel guilty. You're the parent, you're the one who's responsible for how they are doing. How could I not even have an inkling something was wrong. I walked into that appointment like I do all appointments lately like "see my boys, look how awesome they are." They had such a tough start but look at them now. Well I still feel that way, now just knocked down a few pegs.

The dietitian started asking me about the boys diet. Again, feeling a little proud, still not getting it, I start naming off all the whole grains, fruits, veggies, turkey dogs, soy cheese sandwiches, organic chicken nuggets. She immediately asked where they get fat from their diet. What now? fat? Well certainly they get some. They get some from their soy butter, hmmm what else she asks? Well.....I don't know. As a parent you think you're on the money when you focus on the healthy stuff. With Spina Bifida and mobility impairment, every one stresses this even more. He can't burn off calories as easily and it would be much harder as he gets older to move around if he's overweight, so you focus even more so on nutrition. I wasn't purposefully depriving him of anything, just focusing on the fruits/veggies/grains as much as we could and the boys love it.

The biggest challenge is perhaps all of their food allergies. The dietitian commented that most two years olds are getting fat from whole milk, cheeses, even the occasional ice cream cone. My boys are allergic to everything dairy. Their most recent allergy tests show on a scale of 1-6 allergy classification with 6 being the most severe, they are a six. They aim high my little buggers. Someone might have mentioned to them this was not the high number they want to shoot for.

This means they can't have anything with any milk or milk components in them. No butter, no cheese, no ice cream, no anything that says it has "whey, casein, non fat milk" the list goes on but I won't bore you.

If however you a person reading this and having similar struggles, I found these articles helpful and maybe you will too. Ingredients to look for/avoid: http://foodallergies.about.com/od/dairy/qt/milkfreediet.htm
and recent study states children taking longer to outgrow food allergies but still have hope: http://www.medicinenet.com/script/main/art.asp?articlekey=141022

In addition to this they are also allergic to nuts, eggs and to a much lesser extent even soy. We've been doing soy products on the advice of their allergist because its much lower on the allergy list and hey, they have to eat something!

So we came home with soy based pediasure drinks and a recommendation to increase their dietary fat. We have to check in with the nutritionist in a month to report specifically Alex's height/weight. If even on the high fat diet, he makes no gains in height or weight over the next month then the talk will be about getting a consultation with endocrinology to see about growth hormone testing. Yeah, I was thinking that we needed another specialist, ha! no but seriously if someone is reading this and has any information/experience with this, I would love to know. I have no idea what to expect in this regard.

He is currently 27 inches in length and 19 pounds. His brother is weighing in a bit heftier at 20 pounds but 31 inches long.

Honestly my gut is telling me that I just have little guys and that there isn't some deep dark secret to uncover or something else to be treated for. Obviously if there is something wrong, we want to know and address it but I'm hoping my gut is right on this one.

All of this would be so much more straight forward if it was as easy as that. Feed little people (ooooohhhh my neighbors/friends will LOVE this inside joke) more calories and fat, Little people gain and every one's happy, story closed.

BUT our lives and specifically our boys lives never tend to get away with straight forward or boring. We started the new high fat diet just a week ago and already boys bodies are NOT happy. I have coughing, restless babies during naps and night time, even smaller appetites than usual, which then gave way yesterday to Alex throwing up right after dinner. He keeps coughing like he needs to get something up, I can hear the gurgling even when nothing follows. He's in such a good mood UNTIL he tries to eat or drink something and/or lay down. Sound familiar? We used to be experts at acid reflux. The boys graduated from all of their medications eight months ago. For those happy people unfamiliar with the world of acid reflux, guess what triggers symptoms? yep: fat. Now I currently have two little people who are not sleeping well, not eating or drinking well and one little person who can't keep the little bit he IS eating and drinking down. Not exactly the trend we are looking for and not a happy Mama does this make. Awaiting for another call back from our GI doctor.

UPDATE: A little more information: Apparently the hospital scale showed Alex had actually LOST weight, about four ounces in the last 5 months. I don't understand because our home nutritionists scale shows he has gained, albeit VERY Slowly averaging just over an ounce a month (seven and a half ounces over five months to be exact). Its not great, they like children this size/age to gain about five ounces a month on average. Luckily our nutritionist is awesome and she contacted the hospital one to confer. They came up with an agreeable plan with every one. No more shakes for now. Let Alex's body calm down and gradually increase his calories by about 100 calories a day by using the foods he already is accustomed to (soy butters, olive oils) its just a tablespoon using one of those. When his system is settled, we'll try adding an ounce or two of the shake in his drink and see if he tolerates it. If so, we'll gradually increase that amount. No reason for dramatic gains, just needs to go in the right direction. Now the hard part: just waiting for me to give him something that he can keep down and be my happy boy again!!!

And because I HATE to leave a post on a downward note I will be back to post new sweet pics of my littles after I try to get them settled again. Looking at them always puts ME in a better mood :)

Nicholas is NOT a fan of finger paint.

wants.it.off.now.

oh Nicholas will kill me for this one day.

for clarification, its a smock, not a dress :)

Alex however doesn't mind a bit

No Nicholas doesn't have three hands,

just doesn't like to cooperate so well

I've decided just because you have some fancy graph or chart or even initials after your name

you don't get to have the final say

on whether a person is thriving or not!!!!

For their fans

2011-07-30T07:50:00.002-04:00

I have been a very bad blogger. I actually have had several emails from the boys "fan club" making sure that our absence wasn't for good. Sorry, I've just been lazy, no intention to stop updating about the boys anytime soon.

Actually for the most part when we are not on here, it just means things are going really well and not much out of the ordinary to be said. So yes, no news is usually good news. When I told this theory to several of the boys fans however, they reminded I could at least share pictures every now and again. Oops. thats true, my bad.

so here to make it up to you, some of my favorite recent pics:

boys with Grandpa

Alex and Daddy. LOVE it!!!!

Alex reaches out often to hold our hands in his wheels.

Love!!!

nothing more needs to be said!!!

I don't know if this is just a stage

but he doesn't mind posing these days for the camera.

my sweet boy

Alex: oh are you getting the camera out?

oh okay let me set up

ok here's my thoughtful pose

ha,ha such a ham!!!!

Nicholas on the other hand, not so much.

you have to catch him quick,

because usually as soon as he sees the camera,

smile is GONE

but its beautiful when you can catch it!!!!

Nicholas, you are my wild man

THE SLIDE:

this is the boys newest obsession.

It was given to us by our friends/neighbors more than a month ago.

The boys ask to play on it morning, noon, and night.

HONESTLY.

We have kept it in the "play room"

a.k.a the room that everything goes that we haven't figured out what to do with yet

along with some of the boys toys.

We are still trying to grow grass outside and have construction going on in the backyard

so having the slide outside isn't a great option.

The slide is the first thing they ask to do in the morning after breakfast

and its always a race there before bedtime as well.

(thanks Dan and Amy!!!)

Alex loves to crawl up

and then just feels like the king of the mountain

hanging out at the top

before he FINALLY lets go

and giggles his way all the way to the bottom.

Nicholas now thinks he's missing something by just going up the stairs

so he's now trying to climb up the slide part.

holding on for dear life,

you know because its such a long way to go.

ha,ha

Nicholas' other favorite thing:

watering.

everything

including himself

even the pool

I know its blurry

but still LOVE this!!!!!

doesn't it look like they are scheming here?

Alex says "nope, totally innocent here Mama"

Alex is such a card lately.

Look Ma, no hands

can you read what his shirt says?

He should have been wearing that on THIS day.

ofcourse double trouble

the boys have been keeping each other company

a.k.a. entertaining the other one

even when they are in time out.

Mommy *sigh*

ha,ha

I know to be effective, I need to separate them

but had to take pics,

soooooo darn cute!!!

new neighbors

2011-07-04T14:06:00.000-04:00

Double trouble

times TWO

and their big brother Christopher

These are our new neighbors Benjamin and Matthew

They are the same age as our boys.

In our new neighborhood of about a dozen houses,

what are the chances that there are another set of not just twins

but twin boys

and not just twin boys

but TWO Year old twin boys?

born just a month before our own.

Yep, God works in beautiful ways!!!!

Here's their momma Amy

and their Daddy Dan

Yep thats actually one of our kids with Dan.

Alex is already in love.

Dan has already moved into second place

after Daddy ofcourse

but hehem, before needing his Momma

(we'll talk about that later Alexander!)

Here we are at the boys first parade.

and they did pretty well.

just relaxing

and snacking (ofcourse)

Nicholas truly kicking back

what a ham

then some of the sirens started.....

and we were not too sure about those

every one needed just a little bit of love

which is just fine with us!

Thank you to our new neighbors

for already making us feel totally at home!!!!!!!!

Speed Demon

2011-05-28T08:25:00.000-04:00

We are officially in the new house!!!! We moved in last weekend. Boys miss their Grandma and Papa LOTS but I think they like their new digs. (more pics to come) but wanted to post this video of Alex. Our home is in a cul de sac with just a dozen other houses so its a very quiet street fortunately. There is a slight incline on the street that we probably wouldn't have noticed without Alex in his wheels. He however picked up on it right away and totally uses it for his advantage. He is a complete speed demon. I don't think I captured his smiles enough but he really does know what he's doing when he's going and does the whole "no hands" thing. :) He already enjoys freaking his Momma out!

TWO years old

2011-05-16T14:40:00.005-04:00

We're TWO years old, can you believe it?

well that will be a different post

for now, just sit back

and enjoy the show,

I mean pictures......

well this is why I'm NOT a professional.

I can't even call myself an amateur photographer.

I mean the pics are blurry, the light is weird,

or do they call that "exposure"?

who knows.

I try to turn the options to different settings on the camera

and I just make it worse.

try to see through the bad picture taking

to the subjects themselves.

these little peanuts will save me every time!!!!

oh and certainly an amateur photographer would have remembered

to comb their subjects hair BEFORE taking pictures, right?

Just trying to wrangle my two boys

to sit for even two minutes, well thats a job by itself.

I didn't even have lofty goals of them smiling at the camera,

I'd be silly to set those kind of expectations

but looking towards the camera

at the same time

with a clear picture

would have been really nice, ha,ha.

My boys and my lack of camera finesse

have other ideas.....

I tried to bribe one with a foam letter thingy

and the other with a remote

Nicholas took both

and Alex was making a run for it

Do you remember this last year?

the number thing had more pull then I guess.

Luckily we found another remote

I swear boys are born with a gadget gene!!!

you think I could get ONE of them to smile

Each of them wondering if their brother's gadget is better

and thats a wrap!!!!
Nicholas: hey, where's the remote???

(oh thanks for lending us the number Michelle--sorry

about the teeth-marks though!!!!)

oh and can't leave without sharing a few pics of cake,

who could forget cake??

boys weren't sure what to make of the balloons

or the sitting and waiting.....why are we here?

and then Elmo came and they were really confused.

Isn't he only on that big box in the living room?

Hubby and my second year in a row

of baking and frosting.

and yum--all dairy free.

well here are the real critics:

Both are very tentative

maybe they are wondering what

happened to their friend Elmo

where did the cake go?

well they got over that.

everyone went back for more

and no one threw up.

I'd call that SUCCESS :)

A little of our every day....

2011-04-30T22:59:00.002-04:00

Nicholas: Well I guess its my turn to give a little update since Momma hasn't been keeping up so well.

things are good!!!!

Momma says things have been quiet on the medical front

so she says really no news is almost always good news

whatever that means.

I think the people still need pictures but thats just me......

so here's a bit of our every day......

Momma says we are busy figuring things out and getting into everything.

she says thats okay since thats really our "job" right now.

we love playing with our crayons, markers and paper

We really like just taking things in and out

in and out

that in itself is FUN

but did you know that things make COLOR too??

and tearing paper

and taking the caps off the markers on and off

on and off.

hmmmm, how did THAT get there?

our most favorite thing right now is play doh!!!

mom makes weird shapes

and we work on taking them apart

We're a great team that way!!!!

oh and I take that back.

our most favorite thing really is playing outside!!!!!

Welcome to the great outdoors

have you been?

there's soooo much to do.

picking up leaves

rocks

lots to rake

Alex was working hard trying out another wheel chair

but here he is just supervising the rest of us work

then chillin with Daddy

Alex says "I think that hat would look better on me Daddy

But I got a turn too.

Momma says this is what is called

"double trouble"

were both mobile and almost never going in the same direction.

she says we keep her running!!

thats fun, right?

Alex goes FAST in his wheels.

he kept wanting to go over to the cars

I think he was checking out his reflection

Me, I was looking at these wheels

trying to find a way to keep up

hmmmm how do you work this thing?

huh, something doesn't feel right

oh okay this is probably how its supposed to go

Momma said you should read my shirt

because "it says it all."

I think this hat makes me look cool, don't you?

I don't mind wearing it

I'll even put it on myself

Alex doesn't agree.

Momma has to keep putting on his hat

over and over and over again

in hopes that just maybe he'll forget its on and leave it.

But it doesn't last too long

He asks why does he have to wear it?

he keeps taking it off

He thinks it makes him look "goofy"

But Momma said this is the "goofy" part

Grandam and Papa trying to be good role models!!!

It cracked us up

Momma says its REALLY hard to get a good shot of both us

in the same picture

but she keeps trying

and trying.....

Alex thinks this is kind of funny,

making Momma work so hard....

I'm just not in the mood I try to tell her....

really Momma?

soooooo Momma finally decided single photos are okay too.

Nicholas

Alex

thats all for now. I hear we are going back outside

and there's lots of dirt to get into, rocks to pick up

and making Momma do her sprinting to keep

up with us.

oh and teaser alert:

Guess who is having a birthday on Monday?

okay maybe THATS obvious

BUT bet you can't guess how old we're going to be......

what? you can?

hmmmm is someone giving you a clue?

Boy, you guys don't miss a trick, do ya?

oh well More pics to come SOON!!!!!

Playing catch up

2011-03-24T21:18:00.001-04:00

Alex: when its too cold to go out,

this is one of my many favorite spots at grandma and Papa's house

I can keep track of all the cars,

and watch for my daddy to come home

I think he's coming now!!!!

What?

my mom hasn't updated here since we moved?

but that was, like, over a month ago?

haven't you missed us??

Well someone should at least post a few pictures or something,

oh okay, I'll do it, I'll do it~

Here's my brother and I on one of our outings.

Grandma and Papa live really close to just about everything

so when the weather is nicer, we go for walks

to the library, coffee shops, canal, bagel shop.....

ha, got your nose!

just kidding,

its still on your face

MY favorite thing about living at Grandma and Papa's house though?

yep, getting lots of extra TLC.

here I am practicing my new pose.

Papa seems to like it!

and when I'm trying to get away with something.....

I just do my new pose again,

working like a charm!!!

Trying it out on Daddy

I crack myself up!

Yep, and it works on him too!!!

Grandma is pretty taken with us too,

I don't even have to do anything special.

I don't even have to do my hair

and she still loves me!

She's really great, she doesn't even mind that we are

constantly rearranging her cupboards

Oh you want to hear about Nicholas too?

Well okay....... I guess.

He's pretty busy.

He gave up that crawling business right around the time of our move

now he's running, climbing

he even likes to stand on his head.

weird, I know

okay enough about him.

I got another pair of wheels.

yep.

My new therapist thought it was time to try me in my very own wheelchair.

she didn't think I liked having to crawl around so much on the floor

especially now that my brother can run around.

she was right!

Here I am in my "new" wheels.

I get to borrow them for awhile and I LOVE them.

I sometimes let Nicholas "help" me

but really I can go much faster without him!

shhhh..don't tell him that.

I've even let him have a turn when I'm done.

He's not very good at this actually

and he mostly just wants to play with the buckle.

okay well mama said I should probably share a video of Nicholas

moving around too. so here he is.

Mama said I wasn't feeling good this day so I was napping early.

Nicholas always notices when I"m not there so he "checks"

on me often.

Mama says Nicholas has had the harder time

adjusting to all the change.

He's not sleeping as good, has started screaming

and cries or chases after

whenever Mama goes to leave the room.

He wants mama all the time.

but me? I"m all good!!!!

Grandma and Papa have a one story home

so I can go any and everywhere

and I like to fly down the hallways super speed.

Here's one of me perfecting my turns

this is one of my new favorite things to do!!!

Mama says unlike Nicholas, I've not had any problems adjusting.

she says she has to literally pull me

away from Grandma or Papa

when its time to go do something else

or when its just time to go to bed.

Life is good!!!!

Mommy and Daddy are just really grateful to have such a great place to stay

while we are waiting for our new home to be done.

and they say it won't be too long now.

Nicholas seems to like the new house enough

He wanted to get down badly to explore

but I'm not too convinced yet

brrrrrr..... Its awfully cold in here.

Mama says since these pictures were taken, we now have walls,

doors and something called a furnace

so they tell me that helps.

I'll believe whatever Nana tells me

and she says it will be a great house!

They say we should be moving again in about another month and a half.

Alex

2011-02-09T09:21:00.003-05:00

Alex, there has been and will be more posts about how you have and continue to beat all the odds despite being born three months too soon and with Spina Bifida. I am inspired daily by you (and your brother) with where you are today. It is almost absurd to me now to think about how much I worried about whether you would be able to walk or not before you were born.You have taught me what is truly important in life and it really has NOTHING at all to do with your legs.

But no this post is not about Spina Bifida or the fact that you were born at just one pound, 10 ounces. Because as miraculous as your beginning was, you are amazing simply because you are you!

Just like in the previous post about your brother Nicholas, It will be hard to narrow it down to just a few things but here are some of the highlights of what I LOVE about you!

Everyone that meets you comments on your thoughtful gaze. You've truly been this way since you were just a baby, as if you could really figure everything out if you looked hard and long enough!

oh, those eyes just melt me everytime!

and those lashes....

I love that YOU love books!!!!!

we read them before nap

and before bed

but you bring them to us throughout the day as well

and keep asking for more!

We have a soft bin of books that you easily pull over

and you seem to be looking for a certain one

and give a BIG smile when you pick one.

Your top 10 right now include anything that makes

mommy or daddy have to make animal sounds

or anything with flaps that you can pull and look to see whats inside.

you love to help turn the pages!

I love your curious side

Here Kitty, kitty!!!

I actually love that you are a contemplative, take it all in kind of boy.

my little philosopher

or is this "come on guys, I'm bored already!"

I watch those eyes and can almost see that little mind working.....

I love your more serious side because it is that much more striking when you share your awesome silly side!!!

You do the funniest face when you're really having fun.

its your squinty eyes/nose face dialed up with something hilarious you do with your mouth.

I know, I can't describe it but it makes us laugh EVERY time

cracks me up EVERY time!

You are doing it a lot these days and its when I know you are at your absolute happiest

which ofcourse just makes MY heart sing!

I love how you sign "please" for everything

although it makes it really hard to say "no" to just about everything because you "ask" so nicely.

Ofcourse its also really funny when the rare chance we don't give in to your request for whatever "please" is for and you think if you keep doing it over and over, more vehemently that we'll give in. your little temper sure comes out. I even love that too!!!

I love that you are so in tune with your brother and ever since I can remember, you laugh or cry simply because he is. Often times I hear you start giggling out of nowhere and I realize its because you hear your brother in the other room laughing--gosh have I said how much I love that? The connection that you have!!!!

I LOVE that you have completely flattened your crib bumper on the side facing your brothers crib because he's the first person you look for and "talk" to as SOON as you wake up, and the last person you check on before finally giving in to sleep!!!

oh and froggy! You LOVE this thing.
It is well worn from all the chewing you've done to his poor little "feet".
You find it the second you get into your crib

and if you wake in the middle of the night, you search all over for it,
until you find it, sooooo sweet!

We have been trying to teach you hugs
Froggy is the first and only thing you would "hug" for awhile.
You lean in real close and put your head down for "hugs".

You actually do that for Grandmas, and your daddy now
but for some reason mommy wasn't on your approved list yet?
We'll talk about that when your older.
Until yesterday anyway.
You crawled over to me and put your head down on my leg
to give me "hugs"!!!!

and then wanted to make sure you got credit for this!!!!

you're a little stinker, I love you!!!!!

oh back to the cribs and brother love......

You constantly inspire me by your determination, your strength, your amazing sweet sweet spirit.

Here you are supposed to be practicing your standing, but mostly you just want to climb right up into that chair, move out of the way Daddy, I'm going!!!

Pulling yourself up on your knees all the time in your crib now!!!!

You got your wheels almost three weeks ago now.

I thought I would be sad about all this new "equipment"

but who could be sad looking at this face ever?

You LOVE your wheels. You crawl over and bang on the wheels

to tell me you want up and in!

You smile as soon as you start wheeling around.

and you've taught ALL of us "uh oh, move out of the way--

Alex is on the run!"

You've taught me that needing equipment isn't a burden,

its your FREEDOM!

I love anything that puts this smile on your face!!!

Here you are strutting your stuff in your wheels.

You are pretty fantastic. This is you only two weeks

after getting them. You make it look effortless the way you move,

turn around and speed ahead. I am soooo proud of you!!!

the only problem? trying to keep your brother safe

while little Mario has the floor :)

Nicholas is attracted to those shiny wheels like nothing else

and as much as you love your brother,

when you want to go, you don't stop for any one :)

we use snack time so Nicholas is tucked safely away for a bit

of your wheels time.

Really though, its a great thing to have to problem solve!!!!

I love that you light up when Daddy comes home, or heck even walks in the room. You are such a Daddy's boy and I'm not even a little bit jealous of that, partly because I think he's pretty great too!!!!

Honestly I love that you make people work a little harder to gain your smile,

because its such a reward when you do and they know they earned something special!!!!

and I challenge any one NOT to laugh when you do, its soooo infectious!!!

Nicholas

2011-01-25T22:04:00.001-05:00

I wanted to do a post not talking about medical updates or challenges but just about how amazing I think my boys are. I actually started this one several months ago but am finding it harder and harder to piece together more than a few minutes at a time (imagine that, ha,ha). There are few older pictures/videos in here that even though they are older are still really cute.

so here's one for Nicholas!!!! There are so, soooo many things I love about you Nicholas. It would be impossible to list them all.

But here's just a few.......

Every new stage is my FAVORITE stage
For the last several months
you have been SUPER busy practicing moving furniture (a.k.a walking)

yep, you move every thing you can find thats not nailed down,
slamming into any thing in your way, (these are from a couple months ago but sooo cute)

But its when you are pushing things---using everything as a "walker" that you are at your absolute happiest!!!!

I love how you check in with me when you are about to explore something new to get my reaction....,

"I"m going to help you mama, okay?" "see this is me being super cute helping you,
really how can you say no?"

It doesn't stop you..... but I love that you do it!!!

I love how you are fascinated by every thing

and how determined you are

and that look on your face when you accompish something new

ah, ha, gotcha!

I love that you like to snuggle and that even in the middle of the day out of nowhere you will crawl into my lap to do so. No matter what kind of day I'm having, it absolutely melts me

(and I"m pretty certain, any one special enough who gets this gift!)

I love your serious, contemplative side when you are just taking it all in

I love how you stick your tongue out when you are concentrating on something

I love your "squinty" face and how you do it to make US laugh and yet it makes YOU laugh every time you do it too!!!

The crazy squeal you do when you're having a blast.

The familiar smirk that is sooooo your daddy

seriously, that smirk must be in the DNA

I challenge any one not to crack a smile when you are!!

Oh and ohhhhh how I love that your a mommy's boy

at least for right now

I'll try to soak up every second because I know

its not forever

I love, love that no matter who's in the room, its me you look and reach for when you need comforting. such a powerful feeling being a mama. I love how you always reach up for whatever necklace I'm wearing to touch when you're getting sleepy or just needing some extra love. You've done this since you were a baby and its just your thing, its sooooo sweet.

I love how busy, busy, busy you are and yet you always come back to me to "check in" with me throughout the running, like I am your home base. Its hard on others but I secretly (not so secretly now) love that you are so tuned in to me that you sense as soon as I'm not in the room and you go to seek me out.

I love that you look soooo much like your daddy yet you have my fiery "spirit" (a.k.a temper). okay I don't always love that but at least I know I'm in there somewhere.

I read somewhere that once you become a Mother its like your heart beats permanently outside your chest. I totally get that now. I love you sweet Nicholas!!!

this was from a couple months ago but realize

I never posted. I think you need a dog in the future but

for now I love that you "walk" your car

Nicholas walking

2011-01-22T19:55:00.003-05:00

There is a lot of moving going on in our house right now, and I'm not talking about the whole getting ready to move thing. I"m talking about my boys!

I've been trying to get some decent footage on Nicholas and his walking but it never fails that as soon as I get the camera out, he just gets all "deer in the headlights" and all activity stops. His first independent steps began over two months ago but he just didn't seem ready to let go of all of his push "toys" to really get the walking thing down. But during the last week or so, thats all changed.

He's taking steps ALL the time now. He's falling a lot ofcourse too but still. The look on his face when he's doing it is priceless, the look thats like "yeah, I'm doing something big here and I know it." What I also love, love, love is that it almost seems as if each of the boys was waiting for the other to really get moving. I just don't think its a coincidence that Nicholas is finally taking off just as Alex is finally getting a chance to also be upright and moving. I just know that there is this twin/brother thing going on between them. The way they look at each other and its like they speak their own language. I know it sounds hokey but I'm witnessing it daily.

Hey, you thinkin what I"M thinkin?

Yeah, lets get her!!!

For the record it was a vegetable soup kind of day

and just to add some fun, I offered prunes to Alex

you know to help things a long.

ofcourse you can't give something to one boy

and have the other not want some too.

so Mama did not stay very clean during this lunch!!!

Lucky for me these messy boys clean up pretty cute!!!

Needless to say, my heart is sooooo full!!!!

Anyway finally got some footage of Nicholas doing his thing. He loves doing his "laps" between his daddy and me!!!

Little Mario

2011-01-18T17:06:00.004-05:00

After a longgggggg wait, Alex finally got his very own wheels. We trialled out this mobile stander back in Sept and again in October before we could finally justify to insurance that Alex would greatly benefit from this. Three long months later and he got his very own!!!!! It has felt like such a long wait. We had borrowed one from a loan closet without wheels but it was too big for him to ever really feel comfortable in it, even with all of our attempts to prop him up and distract him with toys. It didn't have wheels either so he had no freedom. but now, he has wheels, and the wait? soooooo entirely worth it to see his smile, hear his laughter.

I was a little worried he'd not remember how to use it and start all over again. Silly Mommy, always managing to worry over nothing. Alex certainly didn't forget. He LOVES his wheels. This is only his second time in it since getting it late yesterday and he's already figuring it out, his arms are so much stronger than when he borrowed one just like it a couple months ago and he's going fast, fast, fast. Makes a momma's heart so very happy to see her little one soooo happy! Now the only concern? keeping BOTH boys safe while Alex (quickly becoming known as little Mario Andretti) is flying around these parts!!!

For those that aren't familiar you can read about standers here . You might not be able to see it so well in the video but Alex is standing in this mobile stander. He has his "boots" on to keep his feet and ankles stable and he's locked into knee stabilizers as well. His upper back and bottom are supported as well. Standers have a tremendous amount of benefits medically as well as developmentally and socially for those who can not otherwise stand on their own! Alex's arrived late yesterday afternoon and fits him perfectly. We couldn't find any before this one that actually fit him. At 26 inches, he's still a pretty little one and a half year old but with a very BIG spirit!!!

Nicholas also wants to get his hands on these wheels BADLY ha,ha and its a bit challenging keeping him out of the danger zone, ha,ha. Yeah, life's pretty good if this is my biggest concern these days!!!!!

This isn't the best video quality but I just couldn't wait to share so hope you enjoy!!!! I'll be back with more soon!!!!

thanks to our awesome therapist Julie for all of her support in getting this for our little guy

and keeping his brother out of danger and even laughing during our therapy time :)

Change

2011-01-11T21:45:00.002-05:00

I'm soooo not good with change. I'm that person that relishes routine. Not to the point of boredom but I like knowing whats around the corner. I hate surprises. I like to be prepared, or at least feel like I am. I used to be the kind of person who knew what she was going to wear the next day. Now I'm just like that with the boys and for me, throw on whatever's (hopefully) clean. Change is stressful. Our journey right now is all about change and we'll be living there for a bit to come.

I know change is not all bad. Change is necessary. It makes you grow and stretch, propel you forward instead of being stuck. It can be positive, even life changing. I want to look at it in the glass is half full kind of way and mostly I do. Its just change is change, and I find it stressful.

We are moving, in three short weeks. This is a (mostly) very good thing. We are grateful that everything has come together and we have the opportunity of building a home which I am very excited about. We get to help design a home that hopefully will fit our family better for the future and I realize a lot of people never get that chance. I am so grateful that we are able to, so grateful. We are building an open floor plan ranch home that will be much more accessible than where we are now. We will be in a quiet cul de sac for the kids instead of towards the end of what has become a much busier street. A better school district and much closer commute to work for hubby which will hopefully translate to him being able to spend more time with his boys in the evening.

I know its all incredible!!! My only wish is that I could jump right from here to there. right now. Transition is hard. I'll be moving further away from my own mama which ugh, just stings. We'll still see eachother obviously but it will just be a further drive. My mama has been a constant and even though she works full time, she manages to get over to see us and the boys every single week. I know the move will make that just a bit harder, especially for the rest of winter and that makes me sad. I know we'll figure it out though.

We would have been "home-less" these next few months while we wait for our house to be built and yet need to be out of the one we've already sold. We looked briefly at what we would have had to pay to rent a place while we waited and all of the moving costs on top of it. We are incredibly blessed that we were saved that whole hassle when my in-laws offered to have us come stay with them during this transition. Talk about generous!!!! The house is only a few minutes from where we are building so the bonus of being able to watch the progress on the new house will be priceless! Now its just getting our house packed up and figuring out what things to bring with us during our wait. I'm worried how the boys will handle all the changes and then a couple months later, more change as we move again but thats tempered by the extra doting I know they will get from their grandparents in the meantime!

I'm also learning because of the move we are losing almost all of the boys therapists. This is another biggie. These people become your family. You see them more often then your "real" family a lot of the times. They are here every week, twice a week. You get to know them, they you. You start out just being therapy, and them showing you exercises and activities to help your children be the best they can be. You see them believing in your kids, and they end up loving your kids, you get to hear about theirs. Topics slip to the regular ins and outs of child rearing and you count on them as the amazing resource they are. Sometimes they are the only person outside of your spouse that you'll see that day. You look forward to them coming. They see you when you're not showered, the kitchen is still a mess, and yet its comfortable. They don't judge you and heck the people we have make me feel like I have my act together way more than I do. Its hard to say good-bye. Its hard to start these new relationships over again and hope that it "fits" this easy. You want the new people to just start out loving your kids, believing in all they can do right from the beginning. You don't want to have to start all over and explain everything they've been through to where they are now.

I know it will all work out in the end, maybe for the better even. Sometimes its good to have fresh eyes, every one has different strengths so maybe our new people will bring new experiences with them, things we haven't tried yet that might help. I know we are doing the right thing for our family, I know we are exactly where we need to be so all the changes are just going to have to be for the best.

Speaking of where they are now: We had their check up a few weeks ago at the pediatrician. Nicholas is 19 pounds and 29 inches long and Alex is 18 pounds and 26 inches long. I know they are little still at a year and a half but its amazing to me how much they've grown from that one and a half pounds. Both boys are doing great. Nicholas is still working hard at that walking business.

He's letting go more and more and getting more sure of himself. The last few days he is practicing walking back and forth between Daddy and me and he gets the most satisfied look on his face like he just knows he's doing something great. We've been trying to get a video of him for awhile now, this isn't the best one but you get the idea. Something about getting the video out and he just sits right down usually. stinker.

Alex is doing great. He's working sooo hard on sitting by himself. He still needs one of his hands for balance but he's been quickly letting go with both hands to hurry up and clap before he loses his balance and he is so proud of himself when he does this. He's so strong and he's trying to pull himself up on everything. We got the best news which is his mobile stander has finally been approved and it should be arriving in the next week or so. I can't wait to see him in it again!!! He is back to wearing his eye patch a couple hours a day since his eye had been drifting again. The eye doctor wasn't concerned and said sometimes it can take a couple times before the eye is strong enough to go without.

Alex: I solemnly swear (to try) not to rip this patch off.

He is also getting a neck brace next week to help with his torticollis. We had been making gains with his head tilt with exercises and stretching but now that he's getting older and more independent, he's not as agreeable about these things and so its time to try something new. He will wear the neck brace to try to re-train him what proper alignment should feel like. He'll wear it whenever he's awake for at least a month or two before we know if its helping. I resisted this a few months ago when it was suggested because I didn't want to do one more thing "to" him but I understand now that this is "for" him and hopefully we can help improve this while he's still young.

Here's some teaser pics but check back soon for the video (blogger is having issues)!

This is a toy the boys got for Christmas from Grandma Karen and Grandpa Fred. Nicholas is obsessed with it!!! Its the first thing he wants to play with after breakfast. He likes to ride it, push it, play the music. Its hysterical. The only thing Nicholas doesn't like is when Alex wants to ride it, push it or play its music.

Then we discovered they BOTH like it if they do it together. Nicholas LOVES pushing Alex on the Firetruck. and Alex LOVES it too. Its the cutest thing. ever.

Check back soon, trying to upload the video!!!!

Christmas

2010-12-27T21:49:00.000-05:00

Last Christmas.......

soooooo so adorable. I want to crawl into the photo and snuggle right in with them.

I love that they used to cuddle all up together

But this year brings a whole new kind of wonderful.

The boys weren't too sure about this whole unwrapping presents thing.

They weren't even that interested through much of it,

and when they did get curious, it was pretty tentative.

Nicholas: Its really okay I just ripped through this thing?

Alex: easily distracted, but happy to find something new to 'eat'

After he opened his first present on Christmas morning, Nicholas seriously went over to his chair and signed that it was time to eat. Really.

He figured out after breakfast that were actually

some really neat things in all of those "boxes" just waiting for him.

Nicholas: YES, this is the book I wanted!!!!!!!!

and the best part: all the loving on and from our family and friends!!!!!

There's absolutely NOTHING like seeing the smiles from your little ones faces!!!!!!

LIFE IS GOOD!!!!

photo out-takes

2010-12-14T12:56:00.001-05:00

Photo outtakes:

Any one knows that taking your child to get their pictures done is a process.

It SHOULD be simple.

Pick outfit, bring child

or so thought the person who obviously didn't have children.

I thought I had it pretty well figured out. I would schedule the photos for right after the boys had their "well rested" nap and after they've had a hearty breakfast and bottle so they wouldn't be hungry and cranky. I also scheduled it for mid morning which tends to their "happy" time. I picked out cute coordinating outfits, brushed their teeth, their hair and brought their favorite snack "just in case."

The reality is:

kids have their own agenda

and they don't so much care about yours.

any one with more than one child will tell you,
getting a picture of ONE child smiling is a gift

getting the same picture with two or more children smiling

well, thats just a dream
at least at this age.

ummm...guys...did you know nothing is in here?

really, they want us to smile over a couple empty boxes.

and a lousy ornament. well could have stayed home for this

hmmm but I've got my eye on all of those cords....both boys in their ready to take off position.

mom and dad got their exercise just constantly putting them back

and saying just hurry up and take a picture. now. fast

before they are off again.

pulling the ear must be "the" sign that you better give up at least one smile

or we'll have to be here forever.

Alex finally smiled on his way to get those cords

and luckily that camera click was fast because, phew, they got it on film!!!

and one for Nicholas too!!!

these last two shots though

sure made up for the chaos of it all!!!

Amazing

2010-11-30T22:18:00.000-05:00

I have been really slacking on the updates and there's definitely news to update!!!!

Alex had his follow up sleep study more than a week ago. Check here for information from his first sleep study. Hubby definitely felt it went way better than his first study several months before since they didn't charge in the room with oxygen the entire night but we didn't want to get our hopes up. Even the surgeon who took out his tonsils and adenoids out wasn't that optimistic that they were enlarged enough to make that much of a difference in the severity of his apnea. Well Alex amazes the "experts" again, I don't know why I bother to be surprised anymore. He's been lovingly referred to as a rockstar since his wee NICU days and he continues to be one in my eyes.

We met with his pulmonary doctor and he said his obstructive sleep apnea went from severe to mild. His oxygen sats never dipped below 92% during the most recent overnight study. Can you say amazing???? Want better? He is now on his second night of sleeping at home without oxygen tubes all taped to his face. yep!!! This is only the 3rd time in his 18 months of life that he's been able to be without oxygen. Two of those times he's only been able to be without it for a week or two before getting sick and needing it again; so be forewarned the mama with the purell is back in charge during this winter cold/flu season!!!!

His pulmonary doctor agreed to let us hold onto the oxygen and apnea monitor for awhile longer since it was just in August that Alex had pneumonia and the only way he didn't have to be hospitalized was because we had all the oxygen, monitors and nebulizer machines at home. The doctor hopes that as he gets closer to two or three years of age if we can minimize his respiratory illnesses and give his lungs a chance to heal and grow healthy lung tissue, he'll be able to fight off colds, etc without needing the heavy artillery.

and Nicholas? Yeah he is pretty fabulous too!!! He started taking independent steps almost two weeks ago. He is so cute about it too. He flys around pushing anything he can find around the room and then stops about two feet in front of me and raises his hand above his head like he's in class with a question. I've learned this is my split second warning that he's coming for you, ready or not. At first he was lunging himself full steam ahead and pretty wobbly but in a very short time he's working it out and his coy little smile tells me he's pretty proud of himself too!

Those are just a couple of examples of our really fabulous days. But I'm a HUGE fan of the ordinary days more and more lately too. It feels like we've had a long journey to get back to ordinary. Just thinking back to everything that has happened over the last couple of years. The time and energy it took for us to start our family, then all of the complications beginning so early in our pregnancy, the premature birth, the three months in the NICU, the nine surgeries between the two boys in 18 months, illnesses, hospitalizations, new diagnoses, yadayadayada. I am more than happy to get back to the regular, ordinary day to day of life.

With no more anticipated surgeries (knock wood lots of times), and Alex coming off of his long time need for additional oxygen, there is this sense of calm that is just starting to settle in that I haven't felt in what feels like a very LONG time. I feel like we are coming off a turbulent road and rounding the corner at last. Its an amazing feeling. Am I using that word too much? oh well. I've tried other words on and thats the word that fits!

We've gotten a chance at some ordinary lately and I love it.

Goofing around at home:

spending time with family

The first hair cut

Alex: I don't know about this

hmmmm.....

Okay, I approve!

And Nicholas?

he was supervising

and flirting.

now he says he has to grow some more hair quick

so he can come back soon!!!

the Christmas pictures...okay well the header is just a teaser, will be back with more soon :)

Parenting

2010-11-10T10:25:00.001-05:00

Sometimes I worry. Any of you who really know me will find this shocking I know, ha,ha. What I'm about to say may sound crazy. Maybe more crazy than my usual even, maybe not. When I was pregnant with the boys, I remember having many a night where I would lay in bed worrying about what the future held for them. I obviously worried about both of my babes but more so with Alex because of the known medical issues and challenges we were told he would face. Outside of the "regular" list of worries I had, I also worried about how the boys would relate to each other. A couple of the big ones included: Will Alex wonder why he was born having to work harder at being mobile then his twin, will he feel left out or left behind of activities that Nicholas will so effortlessly be able to do? Will he wonder why he has to deal with more health issues in addition to the mobility stuff? Will he resent his brother that he doesn't have to deal with any of that? These are questions I obviously still wonder about and only time will tell.

No, that's not really the crazy part. I think any one would get why my mind asks those questions from time to time. The crazy part is something I didn't really give much thought to until the last couple of months, the flip side. Will/does Nicholas get jealous of all the attention seemingly lavished on Alex? I mean I can't help but wonder sometimes how things might look from Nicholas's vantage point. Does/will he think that Alex gets more attention? We do have some pretty fabulous people who come several days a week just to "play" with Alex. Alex gets cool looking "boots", different types of play toys (i.e. equipment) just for Alex, etc. It may look like Mommy does a lot more one on one time with Alex as I am doing his daily stretches, exercises, as well as playing to entice Alex into a few more minutes in the stander. Nicholas also sees me taking Alex out for extra appointments and is just now getting to that age of him minus mommy = separation and oh by the way, he does not like separation so much right now. IS he thinking that he's somehow being left out of something special? If not now, will he feel that way as he gets older? Will he end up having resentments because of this?

I'm trying to be conscious of my time and energy with both of my boys. There is no such thing in parenting or life for that matter as fair and equal. You do the best you can in any situation. I try to spend some extra one on one time with Nicholas when Daddy's home or when Nana is over. Nicholas is a mommy's boy (for now at least) and I LOVE that. He gravitates towards me the way Alex throws himself at his Daddy (or Nana) the second he/she walks in the room. I actually love that too, the unique bond they share with each of us. Anyway, my hope is that I can be the best parent I can be to BOTH of my boys.

Mark and I have always said we wanted to treat and raise the boys the same. We don't want to "baby" Alex because of his disability. On the contrary, we want to give him the tools (therapies, exercises, equipment, etc.) to be just as independent as his brother some day and many days we ask ourselves are we pushing Alex too hard, not hard enough? Are we requiring the same from him as from Nicholas? Heck we even ask ourselves if we are not encouraging Nicholas enough on the mobility front because what if subconsciously we don't want him to get too far "ahead" of Alex? Oh the second guessing. I was a much better parent years before I became one. I've had quite a bit of experience with children. I worked in day care for several years and did private nannying for years through college. Gosh I remember how I used to just know I would NEVER do this or I would ALWAYS do x,y,z for my child, the exact opposite of whatever example I was seeing at the time. Ofcourse now having my own children, the light bulb has come on and I realize its never as easy as you assume it to be.

Funny now that you can look back and see that in every stage in life, you're the "expert" until you are the one actually submerged into the role. Then reality hits and you realize that you don't know half as much as you thought you did. Or at least thats what I"M finding. oh well. I guess if you didn't have that bit of blind confidence, you wouldn't take that next leap. and the next leap? Its always worth taking. Even if you are a bit blind while doing it.

In all of this worrying about what kind of time and energy I can give to each of my boys, I can't forget ofcourse that its not just about my time and attention (or Daddy"s) that matters solely to the boys individually but what they bring to each other. They might not have our attention all to themselves but they are sooooo fortunate to have a built in play mate and pal 24/7 which most of the time they seem pretty happy about. Its nothing short of awesome watching as they purposefully try to get each other's attention now, make each other laugh by doing a goofy face or squeal or trying to play hide and seek or chase each other.

Like any parent, I want my boys to be the best of friends. I think about how I can help teach them, raise them to look out for one another, support each other and cheer each other on. I know, I know, they are so little still and I know that I can't control every thing (although I may forget that in the next moment ha,ha) but I do believe I have a strong role to influence them.

I know their relationship began a long time ago but I am in awe of how it transforms from little newborn babies that curled up together to nap but didn't truly see each other or interact

here after growing three more months in the NICU

snuggling at home

not a care in the world, Nicholas making a good arm rest

to now banging on their crib with fierce determination to wake up their brother because hey, its time to play. and when awake always checking to see what the other one is up to. I can't wait to watch how their friendship develops.

They are quite simply my double blessings. If they can feel even a fraction of what my heart can barely contain for them, how tremendously they are loved, I will know I am doing an okay job at this parent gig.

Number six

2010-11-05T20:58:00.006-04:00

Here was Alex before surgery this morning. He was very skeptical of the "new" people milling around him but enjoyed one on one time with mommy and daddy and his favorite things, books.

This was Alex after surgery. My usually "too busy moving and shaking baby" to sit and cuddle for even a second but then when sick or not feeling well turns into the baby who snuggles deeply into you for hours at a time; I've said it before but its sooo bittersweet. Luckily I am able to hold on tightly in these moments, for him and for me, soaking every last drop of it in and reminding myself that this sweet chunky love is doing absolutely AMAZING. I may hate the reasons that he is folded into my arms in these moments but I"m darn sure going to take them and wring them all out as long as I have them.

Surgery went VERY well in the words of his urologist. It was a very long surgery in our eyes, well over three hours but not unexpected. The surgeon had a lot of very delicate detailed work to do and we ofcourse are glad he was not rushed. Alex did unbelievably well under that long with anesthesia given what we know about his lung issues. He was able to be extubated right after surgery and just on a little bit of oxygen. A huge relief all in and of itself. It took him several hours after surgery to come around but we were able to be on the way back home by dinner time.

oh and the surgery itself? VERY successful. I'll spare you the nitty gritty details but for any one truly interested or who speaks urology, he had a very extensive hypospadius and chordee repair as well as orchidopexy repair. It was so extensive that the surgeon had prepared us that he would more than likely require a second surgery to do the "finishing" work. After today, the surgeon stated that he was able to do everything he needed to do in just this one surgery and that he does not anticipate needing any further surgeries for this. Hubby and I just looked at each other. We didn't even know that we could hope for that. We figured it was just something that would have to happen. Hearing that your baby does NOT need to have another anticipated surgery is beyond amazing. This was already number six for him and yeah, we are okay with six being last. We feel that six is a good number. We would have never wished for six but now that we are here, we love six. We are MORE than happy to stop there.

Life has admittedly thrown some pretty darn tough things at him in his 18 months of life (wow, I can't believe its been 18 months). But Alex you are such a fighter. And not in a loud, annoying in every ones face kind of way. You possess this quiet, resilient kind of strength that most people take near a lifetime to cultivate, yet you seemed to have been simply born into this world with.

You have this serious contemplative side about you, this quiet, searching, take it all in

and then bam, out of nowhere you bust out with your crazy giggles and squeals

and I love your ability to amuse even you.

and this hilarious wriggle up your nose and snort thing? laugh out loud funny, even to you. Same thing your brother has been doing. Do all kids do this? It just cracks me up.

The last few pics were taken yesterday at Alex's orthotic appt. While we were waiting we found a mirror that was just calling to Alex. Apparently he was really taken with the "other" little boy in the mirror so I snapped a few pictures. so sweet.

Halloween

2010-11-01T19:47:00.000-04:00

The boys (all three of them) started celebrating Halloween a couple days early when I brought the kids in to visit Mark at work. Mark works for a great company and they take the holidays very seriously. Each department comes up with a theme and they go all out. Its fun. Marks department was Mario brothers in case you can't tell from his get up.

Lion (a.k.a Alex) wasn't sure what he wanted to pull off from Daddy more,

his hat or his "mustache"

Nicholas was busy flirting with all of the pretty ladies

Dragon (a.k.a Nicholas) asking Luigi (a.k.a. Daddy) "are you looking at me?"

Alex was playing hard to get.

Then on the actual night we invited some very pretty witches (a.k.a cousins)

and another dragon over for a visit.

Can you believe this dragon is just a month older than ours?
Sorry Nicholas, he doesn't have vertically challenged parents like you do.

Anybody there? a little help here? I mean "ROAR"--get some help over here.

oh......whose idea was this anyway?

our little dragon was fairing similiarily

but still flirting his way though

Here he is trying to get out the door with Uncle Mark to get some candy

By the end of the night, they were tuckered out

Nicholas perked up a second seeing the bowl of candy,

definitely related to his mama

Once they realized they weren't getting any of these treats,

it was all Bye Bye!!

Laughter

2010-10-29T11:42:00.001-04:00

Hope this makes you laugh. Its just a typical night in our house. We are loving how much the boys are "chatting" (a.k.a squealing). sorry its a bit long.

Stay tuned for more posts with lots of pics soon, have several in the works. The quick update is the boys are doing fabulous, busy as ever. Nicholas is still our crazy monkey child, he is every where, moving every thing he can push to walk but not quite ready to let go for long. He's recently learned how to "dance" which is so stinking cute. He not only moves his legs but does this funny thing with his head, almost looks like he's shaking his head no but has more of a bounce to it. hysterical.

Alex is doing great, he misses his "wheels" (a.k.a mobile stander) that we had to give back. We are not so patiently waiting for insurance to approve his own. We have a loaner stationary one that he's really too short to be in but we are trying to make it work. We bring him all these toys to try to bribe him to stay in it for a little bit but he's not having it. He just throws them all down and looks at us. We've been trying to teach both of the boys some sign language and he's got his form of "more" down by clapping his hands. But he uses this to tell us everything he wants. And he furiously claps his hands and furrows his brows when he wants down or is done with something. We thought his brother had the corner on temper tantrums but Alex is just starting to show us now that he can throw one down just as well as his brother. Its pretty funny (for now)!!

In other updates, Alex is officially no longer a pirate every morning. He was seen by the eye doctor who thinks his "lazy" eye is much improved and we can stop patching. YEAH!!!! Its always nice to be able to let go of something, so we'll take it!!!

He has his urology surgery a week from today and we are anxious ofcourse. Its another surgery. Even though it is a three hour surgery, he is expected to be released the same day as long as he recovers well from anesthesia so I'd be grateful for prayers for him. We will be happy to put one more of these behind him!