Monday, October 12, 2009

Time for updates...

We all are still here and doing well. I totally lost touch with my blog. Time to kick it into gear. There has been so much that has happened with us this year. I will post an seperate update for all of us.

Saturday, January 31, 2009

NEXT STEP

Well we had have been to the specialist a couple times and lots of lab draws. So this is where we are at. Nicholas has low thyroid so he is taking meds to get his levels normals. We go back in about 4 weeks to retest his thyroid. Assuming it is okay our next step will be a 2 part test in and out of the hospital for about a week or two. Which will basically see how Nicholas reacts to growth hormones. He has to fail both parts to be correctly diagnosed with Growth Hormone Deficiency. His doctor is very certain this is what he has. Then pending his results he will start injection daily at home and will have to stay on them for the rest of his life as well as other meds. I was pretty bummed to hear it and took it hard at first but this condition runs in our family and my brother and uncle that have it live very normal lives. So as much as it sucks to put our little guy through all the testing, blood work, and medicines, I have realized that this is what is best for Nicholas and he will just know it has a way of life. At least it will ketch him up in height and his developmental delays should correct it self in time as well. It looks as if this condition will continue to run down the family line as it seems to be the males that may get affected by the gene but the women carry then gene and pass it down. So this will be something to watch out for with and if Brooklyn has any kids in the future. So that is what is new and where we are heading next. I am dreading the testing in the hospital but that is what needs to be done. I think I take it worst then he does. He is still not talking at all but in therapy twice a week. They are thinking of getting his some machines that will help him communicate to us. We'll see how that goes. So for now he is just a little smaller then the normal 2 year toddler and don't talk but he still runs around and terrorizes like a 2 year!

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Saturday, January 10, 2009

MRI Update

Brooklyn's expression is exactly how I feel! I could just cry........

So Nicholas MRI results came back and we were referred to see a pediatric Endocrinologist. We had a short visit because the receptionist only scheduled us for a 15 minute appointment and apparently we should have been scheduled for an hour. So we still don't know exactly what is going on but he does have pituitary gland issues. The pituitary cells were empty and is the reason he has poor growth. So they sent us to the lab where we thought we were going to have a bad experience and Nicholas was going to have a total melt down but he proved us & the nurses wrong. He has to be the bravest 2 year old there is or just really curious about the world around him. As they stuck his vane for 4 vivals of blood no tears, no flinches, no worries. It was smooth sailing. He was such a good boy and the nurses googled over him the whole time! We are awaiting results from a bone age x-ray and blood work to rule out other possibilities. We should have those results in 2 weeks.