What does Wolf have?

As I mentioned in Wyatt's story, it's currently a bit of a mystery as to what is actually going on with his bones.  So I thought I'd go through what we know and what we don't know to explain why this has the doctors bamboozled.

Before I do that, I want to mention once again that there is an auction taking place with the proceeds going to benefit the OI Foundation.  (Yes, I know we're not sure Wolf has OI, but that's not really important - it's a great organization and we've already used many resources they've provided.  We fully support the foundation either way.)  Chip Kelly, Oregon's football coach, was kind enough to sign a visor and a football (and we just got a Mike Bellotti-signed football donated as well).  So go bid for a great cause!  Thanks again to the guys at ATQ for putting this on (by the way, my screen name over at ATQ is Gorbachav5, so Wyatt is known as "Little Gorby" over there).  Here's the whole story about the auction.


What is osteogenesis imperfecta?  You can find some good facts at the OI FAQ, and it appears Wikipedia has some solid information if you want a primer.  The basics are these: OI is a genetic mutation that causes a deficiency in type I collagen.  This collagen makes up the connective tissue in bones, so a deficiency causes bones to be brittle.  There is a wide range of severity - some people go through life with only a few more broken bones than a normal person, while in others the disease is lethal.

So why do we think Wolf has OI?  Here's what we know:

• His long bones are shorter than normal and bowed.  His femurs are especially curved, indicating there is something causing the bones to be soft.
• His skull and spine were thinner than they should be.  During the two visits to the specialist that we made, she commented that it was unusual to be able to see the area around the brain and the spinal column at his stage of development.
• His ribs were malformed, causing his chest to be smaller than normal.

Why are we now questioning the OI diagnosis?  Here's what else we know:

• Despite going through a natural birth, Wolf had no fractures.  In fact, the x-rays taken immediately after he was born showed that what we thought was a prenatal fracture in his femur was actually just a bend in the bone.
• He has a good temperament and doesn't mind being handled.  According to the geneticist we saw, most OI babies dislike being held or moved in any way because it causes them pain and discomfort.

Okay, so what IS going on with our little boy?  We just don't know yet.  Both the specialist we saw at Cedars Sinai and the doctors at Kaiser are performing blood tests on the umbilical cord blood.  The specialist, who hasn't seen Wyatt since he was born but has looked at the x-rays, still thinks it's a rare form of OI.  The geneticist we've seen thinks it's probably something else; one thing she suggested as a possibility was femoral hypoplasia, but there are inconsistencies with that diagnosis as well.  Hopefully we will receive the results of the blood tests in the next few weeks and they'll tell us something about Wyatt's health.

The other thing we don't know is how this needs to be treated (or if it CAN be treated, or if it needs any treatment at all).  Are his legs going to straighten out so he can walk and run normally?  Will bisphosphonates (the most effective treatment for OI in children) help him?  Will he need surgery?  Is there anything we can do now to help his bones grow properly?  We don't know yet.  We may not know for quite awhile.  We'll just keep doing what we're doing and pray that the doctors can solve the mystery.

As I watch our little Wolf looking around as he sits in his bouncer, I realize that I forgot one other thing that we know:

• God is good!