Sunday, April 15, 2012

The springboard

I have no illusions. I know my children are behind in multiple areas for their age. I have many appointments and therapies that show me that (plus I have several very sweet same age companions down the road--well one, the other child is just a genius and can't be compared to ha,ha)

I'm pretty okay with my boys being behind. I've accepted that.
I mean if you look where they've started from:

They missed out on a full 12 weeks in the womb of quiet peaceful growing and developing and instead were prodded continuously with IV's, transfusions, xrays, breathing and feeding tubes and constant machine beeping (theirs and their neighbors).

In their first two years of life they've had to have nine surgeries to recover from, and countless infections and hospitalizations. Frankly their first year and a half of life with exception of constant doctor appointments and therapies, they were quite literally locked down at home. We were advised by the NICU doctors and nurses to try and avoid as much as possible any illness because initially their little bodies needed serious time to rest/grow. They were very high risk for RSV and the like. This momma bear took that to heart. It was definitely worth it health wise to try. Developmentally however, I think they missed out here.

It wasn't until they were around two years old that they started to finally see more of the "outside" world, go to library story times, interact with other kids, etc.

So I thought I knew what I was expecting when I sat down to read the evaluation results recently done on the boys. When any child receives therapies and services for early intervention as ours have and get close to their 3rd birthday they are re-assessed to determine if/what needs they will have after they "graduate" the program. Alex already receives weekly therapies in physical therapy, occupational therapy, and both boys receive twice weekly speech therapies. It may sound a little crazy to people who haven't had therapists come to their house for the bulk of their childrens whole lives but our therapists are honestly like family to us now.

They see and help your children grow week by week, seeing them more often than many family members do, they fall in love them and our children them. The boys look forward to their visits almost like it was their Nana or Mammie, racing to peer out the window when they know Mrs. Cathy, Mrs. Minnie, or Mrs. Tara are coming.

So even with all of that positive experience, its a little unsettling to have strangers come into your house, people who have never before met you or your children, don't know their stories, come in to assess how the boys are doing.

The team consisted of a school psychologist, physical therapist, occupational therapist and speech therapist. It took a little over two hours as they went back and forth between the boys. I tried not to intervene except when needed. I was watching the boys react to the questions, the puzzles, the "games". I could see the examiners writing down information, answers and following up by asking me or hubby questions about what the boys generally do when presented by x,y,z.

It almost makes you feel like you are also being graded as a parent in some ways. In many ways, I didn't feel like I was making the grade. Two weeks later we have the 32 PAGES of results for the boys. Much of what we already knew. The boys are developmentally behind for their age, they recommend continuing all therapies into pre-school. They even recommend adding special education for both boys to help them catch up.

They will be attending pre school in the fall five mornings a week. I know that in and of itself will really help them come along. My shy boys need to be able to separate from me, be exposed to more learning opportunities and engage with other children their age. This was already in our plan BEFORE the evaluations so it just reassures me that it is the right thing to do.

I'm kind of just babbling now, my thoughts and feelings a little all over the place. When you read about your children on paper, the way others who don't know them perceive them, compared with standardized measures, it feels so clinical. I know it needs to be objective. I get that. I also know its just the beginning of being compared, measured against standards that we all go through.

Its just they didn't get to see how far they've come, how far back they started, how much progress they've made and continue to make As a parent when you hear about all of the "deficits", you eagerly want to share the flip side, the whole child. Sorry, still babbling.....

All of the boys current therapists are really also their cheerleaders. Its written on their faces how they love them. They have all reminded me that this evaluation is just a snapshot right now in time, it in NO way suggests their potential. I do so believe that, even still it was desperately needed to hear by people who know and see my children often. People who have watched them with me week in and week out overcome so many obstacles in their very short almost three years time. There is soooo much ahead of them that I am confident they will continue to conquer!

All in all, I believe these early years both of my boys are just getting on the spring board, finding their footing and getting ready to soar.

The conversation

This is Nicholas. He and Alex spent the morning at their Papa's 
and got to play with their cousins Kyle and Chloe. 
Here he is trying to tell us all about it.

He was much easier to understand when he was only using single or two-three words. 
Recently he's been doing more "conversations". 
We're absolutely loving his enthusiasm for talking. 
Its just gotten very challenging to translate. 

We have partially translated it with Papa and Mammie.
The "clap" was about a tree in their neighbors yard
 being taken down,
they also were playing hide and seek with their cousins. 

The really funny part?
Nicholas received an evaluation recently and he is thought to be 
behind moderately in some social and adaptive domains.
No thats not the funny part.
He was only thought to have a "mild" speech delay.....
Yep, chew on that one :)

Sunday, April 8, 2012


I am loving watching my boys do their "firsts".
This year we've had so many!!!

This weekend it was time to dye eggs.

Found lots of great ideas on-line.
This was a great source for inspiration and we ended up 
inviting our friends over and trying it out: 

I think it was a hit!!!

a side note but our occupational therapist
would LOVE that we were doing this fine motor stuff :)

We ended up dunking them later to get more uniform color
but if I had to do it again, I think I preferred the unique
look of the drip dot method alone. 
although they all turned out really pretty!!


Easter Morning.
The Easter Bunny sure delivered. 
He remembered that the boys can't have 
the typical chocolate bunnies because of their
food allergies but he sure spoiled them 
with all the other goodies instead. 

The boys were excited to find their baskets

Nicholas was comparing his loot with Alex's. 
Then it was time to find the eggs
We had a practice run with our good friends the night before
so the boys really got into the swing of things this morning

They found stamps
jelly beans that they quickly ate
and Alex liked the sound that all those pennies made. 

After breakfast they got to open even more 
treats from good friends
Nicholas could not put this down.

He even "borrowed" Alex's because you know,
two IS better than one.
Thank you Grandma O!!!!!

Yep: totally spoiled!!!!!!

Our miracles

Remember them then?

Here they are already two months old!

4 1/2 months old

As you know almost three years ago not one but TWO miracles were born. Our boys were fighters from the very beginning but it was with the EXTRAORDINARY care of all the NICU providers and access to state of the art life saving treatment and monitoring that they are thriving today. 

If you are local, please consider walking with us on June 2nd to celebrate with us as well as to thank Golisano Children's hospital for all the work that they do day in and day out. We are forever indebted to them!!!! (no seriously, they are million dollar babies).

We have always said how grateful we are that "Strong" hospital is in our backyard with all the critical care services that our boys were able to receive.

Over 100 days each in the NICU and countless appointments, surgeries, procedures and consultations later, I shudder to think where we would have been without them. 

We have donated every year prior and walked with friends for their "stroll for strong" before but this year its time for us to do it in our boys namesIt would mean a lot to us if you were able to join us. 

The details:
The walk is at 10:30am on Saturday June 2nd. Its a very relaxed one mile pace.

It doesn't matter to me if you give one dollar for donation or 100. Whatever you are comfortable with and knowing it goes to an amazing cause.

We ear mark ours specifically for the NICU because thats where our story could have turned out so differently. But you don't have to earmark yours. You can earmark yours to any part of the hospital or it automatically goes to the places of greatest need. 

Oh and whatever you give is tax deductible.

If you've never been before: lunch is provided to all participants by Subway and Zweigle's. 
There is a ton of things for kids to do afterwards such as bounce houses, games, crafts and a concert by Gary the Happy Pirate. 

We hope to see you there!!!

Sunday, April 1, 2012

Just Pictures

Professional photo day:

Even though Alex is not sharing his smile here,
it was honestly the BEST one taken of the family photos. 

I didn't realize until AFTER the photos were done,
When we had planned our outfits
we were supposed to be holding the opposite kid.

Here is the ONLY one we managed to get 
of BOTH boys.
Another ARGH for mommy

Any one who has ever met Alex
or has heard me talk about him
knows that he has the most awesome smiles
you have to earn them!

this poor photographer
didn't have a chance. 
As Alex's Uncle Alan says:
"this kid doesn't mess around."

But on another note,
doesn't he look so.....
grown up here?

Meet Nicholas
Here's the boy that DOES like
to mess around.......

This is his FAVORITE hat
He decided to put Alex's lovey on his head
all by himself.

Such a ham!!!!

Needless to say 
Mommy was very disappointed that we didn't get to capture
any of Alex's sweet expressions

So part two session by wannabe photographer (mommy)
commenced as soon as we got home:

Alex holding his lovey
in his mouth...

He usually only needs his lovey
at nap and bedtime
traumatizing events
(like above photography session)

Here he comes.....
The Alex WE know and love so well

and since this has turned into a picture-fest,
here's a few more I just have to share:

Getting ready for Easter
Who is that Bucketed boot wearing boy?

Silly Nicholas ofcourse

We have tried to meet the Easter Bunny twice now
This is as close as we get

only puts on a smile
when he waves "bye-bye"