Test Results Are In...

We got a call from our geneticist while we were at dinner last night, and she told us the blood test results had come back.  Our suspicions were finally 100% confirmed.  We have an official diagnosis: Wolf has Osteogenesis Imperfecta.  (Speaking of Eagles songs, I kept singing to myself the first line from Don Henley's "Heart of the Matter" for the rest of dinner: "I got a call today I didn't want to hear, but I knew that it would come...")

When we got the news, it was kind of a weird emotional situation.  On the one hand, it reinforced the already prevalent mindset that Wyatt will always suffer from this and his childhood will be constantly interrupted by doctor visits, testing, and treatments.  OI is a serious condition, and it's tough to think that a lot of the things that our other two boys do now (jumping on furniture, climbing all over everything, tackling me and each other) will be off limits for Wolf.  On the other hand, we now know that what we're dealing with can be treated effectively.  We know that there are support groups that can help us, and there are families dealing with the same issues that are going to change our lives.  Things could be a LOT worse. 

So the emotion was first a bit of disappointment and sadness, but that turned into confidence and determination.  We have God on our side, as well as a veritable army of prayer warriors who have graciously taken it upon themselves to lift us up spiritually.  Our family is not merely going to survive this.  We are going to thrive and get stronger.  And with help from the Lord, our testimony will touch hearts and affect lives.  I imagine that God is going to work amazing things through our little Wolf, and no brittle bone disease is going to hold Him back.  Our God is stronger than that.

As for the diagnosis, we will be meeting with the doctor to discuss specifics sometime within the next week or so.  There were, however, a couple of basic things we determined from the phone call.  First, is that the mutated gene was a rare mutation (even for OI) that is normally associated with type IV OI.  I won't go into the details of how that differs from the other types, but you can see that here, if you're interested.  Let's just say we're glad it's not type II (which is what the prenatal diagnosis indicated it might be - type II is almost always lethal in infants) and even type III is more severe.  Type IV is a bit tricky because it covers the wide range between type I, which is mild and for the most part only involves a marginally higher bone fracture rate, and type III, which involves severe, frequent bone fractures and very limited growth potential.

So Wolf could wind up anywhere between those two extremes.  We'll know more as he grows and develops.  The doctor we spoke to at Cedars Sinai suggested that the experts on OI (of which she is one) are considering tossing out the types entirely, as most cases of OI are unique, making it difficult and uninformative to group them into broad categories.  But for now, type IV is all we know about the severity of Wyatt's condition.

Second, the good part of this is that we can move forward quickly on a treatment plan.  Right now, the idea is to get Wolf started on Pamidronate sometime in the middle of May.  The first infusion will be given over a long period, maybe several days, to see how he reacts.  If he reacts well, he'll get infusions every three months for as long as they seem to be helping, and they should only take a couple hours.

Bad news and good.  Good news and bad.  That's okay, though, because God can handle it all.  Wolf is getting stronger every day.  All this does is make every little milestone he achieves, like lifting his head for 20 seconds straight, that much more of a miracle to celebrate.  And celebrate we will!