One day at a time!

Want to add that this blog is happening backwards until I can write up to the present day.

November 2010

Now that we know what is going on with Nicholas it was time to start figuring out how to treat him. There is no cure for brittle bone disease, but there are things we can do to prevent breaks and give him pain management. I mentioned medications in my last post and careful handling. I'll explain how we do some things for Nicholas.

First and foremost, we never ever pull or push on his arms. Which make changing diapers nearly impossible, especially poppie ones. Most people lift baby up by their ankles to slide a clean diaper under their butts, as well as wiping (normal babies break too!). We roll Nick onto his side to wipe him. This was when he was 3 months old, he is now 7 months old and loves to eat his feet so he pretty much lifts himself. Which has made diaper changes so much better! We encourage him to "eat" his toes to make it easier. But sometimes he can be so stubborn and we have to go back to rolling to his side. This is usually in the middle of the night or early morning when he wants to eat and not be bothered with being changed. Well Mr. Nicholas I don't want to  be doing this at 3:00 in the morning either so let's do each other a favor and get it over as quickly as possible! I tell him this all the time, he never listens :-p

Changing and putting clothes on. UGH! That's a job! When he was 3 months old it was simple. Rule of thumb don't pull his arms through don't force them though.

Picking him up was really difficult for a while because I was so scared I'd put too much pressure on his clavicle or his ribs. But to my surprise we made it pretty easy to wrap our hands and fingers away from those areas and have a good hold on him.  

I'm often reminded he isn't made of paper. My response to that is. What is wrong with being just a little extra cautious? Nothing in my opinion. If we can be really careful we can prevent breaks! It's what I've been stressing for months. He may not be as "bad", but should we really be chancing that? If we're going to have another break I want him to be old enough to talk and be able to explain how it happened. I cannot and will not go though the pain and torture we went though while finding out.

December 2, 2010

We head to Children's hospital to see a Genetic doctor. They diagnose Nick with type one OI. We're some what relieved to find out it's type one, because some of the other types are really bad. We go over medications, physical therapy and any questions we had. They were happy to see how we made our own little routine for changing, dressing and handling Nicholas. Basically we're doing exactly what we should be. He could start physical therapy when he gets a little older, and we could do some water therapy at home. Which we started doing at around 5 months when he was able to hold up his own head. They gave us a note to carry around in our bags explaining that Nicholas has OI and could fracture. I made several copies and keep them in every single bag I take with me. Purse, wallet, diaper bag, car and a copy at my parents. I will never risk children and youth services in our lives again. While we're there we went over both Anthony and myself family history. I have never broken a bone and Anthony has broken several. If you have ever noticed Nicholas' eyes you'll see that around the pupil is blueish gray instead of white. That is a sign of brittle bone disease. Well Anthony's eyes have the same color, Anthony's is much lighter. With Anthony's break history and the color in his eyes they felt very strongly that he has OI. That wasn't a shock because we almost expected it because of his break history. Brittle bone disease is genetic and Anthony is likely the carrier. We are still awaiting results.

Rest of 2010.

Christian's 8th birthday, Christmas, New years. The year ended well. The boys had a great Christmas and we brought in the New Year in style. Twenty eleven is a new beginning for us.

"Soon you will walk into the sunset as if nothing has ever happened" quote from Pam. I think about it all the time. It got me though those hard days when we weren't sure if we'd have a family tomorrow. And we are walking into the sunset as if nothing has ever happened. As time has gone on I go some days without even thinking about that horrible moment in our lives. I'm getting over it, I'm not scared that every knock at the door is the caseworker. We take it "one day at a time" another Pam quote.