Welcome to Holland

A friend of mine shared this poem with me and I thought I would share as well.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our fight to find answers for our little baby brother Grayden

Well... here we are.  The very first picture taken with our sweet, sweet, baby brother Grayden.    Oh how he has been such a blessing and true gift to our family.    I cannot even believe how quickly these eight months have flown by.  Grayden has touched our family's hearts, given us so much joy in so many ways and has taught us so much in this short time.  Never in a million years would I have even thought our journey would go in this direction or the news we received would be this.  So, with that being said I have decided to start this blog to educate everyone on Grayden's diagnosis as it is a very hard subject to speak of now.  I have been relentless on doing this, so please bear with me as I am not the best writer.

From the beginning I knew in my heart that something was just not right with Grayden.  I refused to be in denial about what I saw, and from the experience of having Gavin I already knew that early intervention is so beneficial.  I began questioning his pediatrician from when he was a month old.  It wasn't until he was two months that he was convinced as well.  Since then he has seen countless specialists trying to figure out a reason for all of his symptoms and his global developmental delay.  As of today Grayden has physical therapy twice a week, occupational therapy weekly and the regional center does therapy with him at home one day a week as well.

We received the news last week from his neurologist over the phone.  He told us that he is going to refer us to a genetic specialist at San Diego Childrens hospital as Grayden's chromosome test came back abnormal and he then "wished me luck!"  My heart sank to the floor, I knew from that moment on our journey had just begun.

Grayden has a translocation of the #2 and #3 chromosome and a micro-deletion in chromosome #2 part q24.3 and the size is 1.6mb. 
His result in medical terms: 46, XY, t (2,3) (q24.3;q25.3).
In laymens terms: 
Chromosomes are the structures in each of the body’s cells that carry the genetic
information that tells the body how to develop and function. They come in pairs, one from
each parent, and are numbered 1 to 22 approximately from largest to smallest. Each
chromosome has a short (p) arm and a long (q) arm.  Grayden is missing a piece of the q arm.  A translocation is where chromosomes move.  In his case 2 and 3 switched places.  His sequence goes like this:  1,3,2, and so on.  A 2q24.3 deletion is a rare genetic condition in which a small piece is missing from one of the body’s 46 chromosomes. The missing material includes genes which are important for normal development. Their absence is believed to cause the major features of a 2q24.3
deletion. This deletion is probably a cause from the translocation of 2 and 3.  Most likely Grayden's sequence is only his, and not from Jackie or I.  But, in some circumstances one of us might have the same genetic sequence.  If this is the case, Jackie and I are normal functioning adults and the outcome for Grayden would be very good.  To find this out Jackie and I will have to do genetic testing as well. 

We have an appointment scheduled for Tuesday, July 30 to see a metabolic and genetic specialist.  We will then know his exact diagnosis and what his future may look like.   I have spent so much time on google finding answers and reading about this.  From what I have found there has only been 25 reported cases of this rare genetic disorder.  There are so many not so great symptoms that come with this deletion,  and some of what Grayden already has.     

 Until then we are trying our best to be optimistic and believe that God has a plan for everything and does everything for the good.  We ask that you all please keep Grayden and our family in your prayers.  We have been down a scary road before with Gavin and know that the power of prayer does work miracles.  Gavin is a walking miracle.  Thank you in advance for your prayers.
Carissa