The Brown Boys

The Brown Boys
March 2008

Monday, February 2, 2009

Introduction to my kids.

Andrew is my "Towb."  When I went into labour with Andrew we called my mother-in-law who was studying for her Sunday school class, and in her lesson she felt like God was telling her this grandson was "towb."  

The Hebrew root word of towb means to be good, beneficial, well, pleasing, pleasant, favorable, fair, cheerful, happy, comfortable, right, fruitful, precious, prosperity, fine, glad. Paul gives the best definition of towb in Philippians 4:8: "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable..." 

Andrew is not perfect by any means but surprisingly this little message of "towb,"  has stuck and seems to describe him rather well.   He is my oldest, five years old.  He is very smart, and outgoing.  Andrew has a way to make you really think, and wonder just what is going through that little head of his, he amazes me all the time.  He is hilarious to say the least.  He makes me laugh constantly, sometimes I joke and say God gave me Andrew so I would always be entertained.  He is a very special kid.  

Luke and Lane are my twins and one, well, two of the main reasons I began this blog.  On February 13, 2006 we found out we were having twin boys!  WOW!  We were speechless.  Literally.  We were only planning to have ONE more.  Oh well, like I always say, "There ain't nothin' to it but to do it!"  Luke and Lane were born June 16, 2006, they were 3 weeks early but they were also considered full term for twins. 

They were the most pleasant babies.  I never thought I would hear them cry, so that made having twins a little easier than I would have thought.  :)

Time passed, and they were not hitting their milestones.  They were not sitting or holding their head up good. The pediatrician said, "Don't worry just yet, I believe they are behind because they are twins." Just before they were one, we went to a pulmonologist at Emory in Atlanta. He didn't even talk about Lane's breathing, he just called other doctors in and said, "This is a floppy baby." I had no clue what he was talking about. He said they had low tone and needed physical therapy. So we started the therapy. At twelve months they could hold their head up good, but they could not sit alone. They would not bear weight on their feet, much less stand. They were not crawling at all. 

I knew something was not quiet right. Everyone around me was saying, "Don't worry they'll catch up." But I knew they were not exactly like other kids. 

We got a call from the
pulmonologist and he referred us to a neurologist. Many tests were done. We ruled out a lot of things. One chromosome test took 10 months to get back and it pretty much told us that they were "all boy." (Thanks! Like we didn't already know that!) I was pretty mad about that, they doctor explained to me this would show any genetic problems they may have. So I believe she ordered the wrong test. 

They we were referred to a genetic doctor at Emory Genetics in Atlanta. He decided to do a metabolic study on one of them and a DNA Micro Array analysis test on the other. Eight weeks later Erin (genetic counselor) called and said, "Luke has a 'tiny' deletion in a gene commonly known as the
CoHN1 gene. And because of their physical and mental qualities I believe this may just be your answer. But we will have to conduct one more test and send it to Maryland to be totally positive."

So of course I look it up on the Internet, read everything I can find. Try to find someone who is going through the same thing. "Cohen syndrome..........Cohen syndrome." What does this mean for my two little guys? Should my husband and I tell everybody we have a diagnosis? Or do we say, "We have an answer now, it explains their developmental delay." And just leave it at that.... My problem is this, I don't want to put labels on them. We don't know just how mild or moderate this tiny deletion is yet. 

So that is where we are today (Sept. '08).   We will go to the doctor next week so send their blood off to Maryland and I think it takes about twelve weeks to get it back.

I believe the sky is the limit for Luke and Lane and I want to do what is going to benefit them the most. 

Update: February 2, 2009
We got a confirmed diagnosis on both of our boys over these past few months. And we did decide to tell our family and friends (as some of you already know) because we realized that label or no label it will not change who our boys are, they are very special. And we wanted to try and help other families find a diagnosis as soon as possible, because it can go undiagnosed forever if you do not know what to look for and sometimes "who" to talk to. We hope their story will help other families in any way possible.


  1. Awesome! Now keep writing! Every milestone! Every step! Every smile! Lub you!

  2. YAY! for your blog.... Very interesting and I hope the right people get networked with you. You never know what God has in store for you and who you will touch!