Tuesday, May 1, 2012

3 years ago.....

Three years ago: One pound 10 and one pound 12 ounces: the littlest packages that arrived way earlier then expected and forever changed our world. It would be impossible to put into words how much love this momma has for her boys (any parent ofcourse). This woman was mushy to begin with and then give her two living breathing odds-defying miracle surpassing babies, well what's mushier than mush? Who knows but thats what I am.

Nicholas and Alexander: You came into this world too soon and already having to fight. You've been through more battles than any one more than 10 times your age should have had to have. I desperately wish I could have changed that course for you, made your beginning easier somehow. But I couldn't. What I can do is tell you how proud I am of you both. You have come sooooo far in these three short years. From the very beginning you have defied the odds, changed even the "experts" expectations, and brought so much love and life to many more hearts than just mine.

I Love You!!!!

A little stroll down memory lane, some of my favorites so far:


Our miracles
born at just 28 weeks












 1st "real" baths






Finally home after 102
and 107 days in the NICU

 
Here is Alex's external shunt until he was big enough
to have the internal VP shunt inserted.
We affectionately called it his "bubble"






 



 
Alex's helmet. He had to wear 23 hours a day for almost a year
(Momma worked hard to get pictures of him during that hour without it )
Nicholas not sure what to make of Alex's
"under construction" helmet.
later though he most definitely wanted one of his own
Nicholas always wanted to play with Alex's cords

This was not set up
They used to sleep and cuddle together like this A LOT




Love.....




those cheeks......








 




























 Happy Birthday my boys
We are sooo proud of you and how far you've come.
We love you sooooo much!!!!!!! 

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 every.single.day. 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 :)