What are you up to next?

Today's picture is of my sweet Sam! As you can tell from this picture, the boy is as mischevious as he looks! He definitely keeps us on our toes! Let me tell you a little bit about my boy, to give you a clearer picture.

Sam was born in 2004 and at first, seemed like a normal, sweet baby boy! He was a great baby. He slept a lot and had the cutest quiet cry that sound more like a little lamb than a baby! But as Sam grew, we could tell that he was not developing like our other children had. He didn't babble. He really didn't make eye contact and he had a lot of respiratory and health problems. In fact, within his first year of life, he had several stays in the hospital and then a blood sugar crash at 13 months that nearly could have taken his life. He was a mystery to everyone. By the time he was a year and a half, he still had no speech at all, he was finally starting to walk and even though he was a happy go lucky baby, he was more like an 8 month old than an 18 month old.

I'll fast forward the countless months of therapy, tests, dr. visits and other things we were put through. I'll only briefly touch on the MRI that was performed a few months before his second birthday which made them think he had a terminal brain disease. It was a very trying and exhausting time. Through it all, we worked hard to make the most of it. We loved our little boy and did all we could to help him make those first few sounds. He was 2 before I got to hear him say mamma for the first time! Precious words, indeed.

In May of 2008, just weeks before our move to Utah, Sam became very sick, very fast. By the time I got him to the ER he was barely breathing and they had to give him a lot of high powered steroids to get everything under control. It was a very long night, one in which I didn't get a wink of sleep as I met with dr.'s, answered questions and watched the machine that monitored his every breath. Somewhere during those long hours, they asked if they could run some genetic tests, and I agreed. He had already been through so many things, I didn't hold out hope for any answers.

Right after the 4th of July, when we were all moved and settled in our new home in Utah, I got a call from his pediatrician with results that would forever change how we perceived the future for Sam. They had found a chromosomal defect and a condition called xxyy syndrome. We have since come to learn that there are many things that go with this diagnosis from speech problems, learning delays, frequent melt downs, lack of impulse control, even an explanation for his crooked pinky fingers. He may develop Type 2 diabetes, arthritis and a whole other host of health problems, as he grows. It is unknown, exactly how this condition will affect him. He may finish school, graduate and overall lead a normal life, or he may be in our care for the rest of our lives or anything in between. No one has exact answers for us, and for now we wait and learn to live each day and take each challenge as it is. Truly, I am learning to appreciate the gift of each day-even when its hard!

I'm sorry to ramble on for so long, but as I said in the beginning, I have a crazy, wonderful life and being able to journal about it helps me to put things in place. I will probably discuss Sam here often, not because I love him more than my other kids, but because he consumes about 85% of my time, energy and attention!