Update on Daniel

Many people have been asking me if there is any news on Daniel's jaw problems.  The answer is, "No."

The oral surgeon we saw has been trying to consult with other medical experts before giving us his final diagnosis.  We had been going off of "Monostotic Fibrous Dysplasia."  But now that may not be what we are looking at.  The doctor took Daniel's scans to a radiologist at a nearby hospital for an informal reading (which means I didn't have to pay for it).  The radiologist said his initial thought was that it looked like a result of abuse.

Huh.  I told the doctor, "Well, I know it's not that, so keep looking."  He wondered if there was anyone that could be abusing Daniel that I might not expect.  Really, we are a boring family. I am the main caregiver.  He doesn't play sports.  He isn't part of any clubs and doesn't play at a friend's house very often.  And for 3 1/2 years?  Yeah.  It's not abuse.  Keep looking.

And he was.  He'd mailed the scans off to his colleagues in Iowa.  (These are the doctors he does training with and he considers them the experts.)  I had this conversation with him the week before Christmas.  Meanwhile, Daniel seems to have suffered a flare up of some kind.  The medicine doesn't seem to help very much.

I left a message with the doctor today and expect him to call tomorrow.  He's been very good at explaining things and assuring me he's trying to get some answers.  We may be looking at doing a biopsy to get a little more to investigate.  After this long, I'm just waiting for him to tell us what to do...we will do it!

Nathan's pain has also returned.  He'd had such a good run of no pain, that I was beginning to wonder if he'd somehow healed.  I guess not.  We have a scheduled appt. next month, but I may have to call sooner if the pain gets much worse.  I don't want to have to make another trip down to SL.

Maybe I can make appts for both boys down there on the same trip!

Nathan's Hip

Many people are wondering what is happening with Nathan's hip.  Join the party!  We are also still wondering.  Here is what we know so far, and the questions our knowledge inspires.

Based on an MRI and a CT scan, Nathan does not have cancer.  We were unsure about that for a while and spent a long weekend wondering if that would be the diagnosis.  There is a higher bone density on the side that he is experiencing pain. The "impression" from the doctor reading the CT scan is that there is a "mild chronic stress reaction" of the iliac bone.  But that is an unusual place to have that problem.  The fact that something like that should have healed long before now has meant we get to see a doctor at Primary Children's Medical Center in Salt Lake.  The doctor mentioned something about possibly having fluid "in there."   I can't elaborate on something I don't understand.

We did that on Tuesday this week.  They also agreed that nothing too serious or scary was going on (like cancer), but they were still unsure what was happening - exactly.  Nathan had some blood drawn that day and we have an appointment next week for a full body scan.  The scan is supposed to be even more in depth than a CT scan (which is more in depth than an MRI).  They will have to give him some contrast of some kind and wait for it to work before they do the scan.  We've been told to expect the appointment to last about 4 hours.

So now we are trying to figure out what to do with the rest of the kids on that day.  School is out.  It seems unnecessary to make them also take a 10 hour trip.  It's the day before Thanksgiving so we could just hang out with family for the weekend, but Chad would have to meet us separately and there are animals to care for and we'd have to add packing to our plans.  Besides, with all of the traveling we've been doing, and the stress we've been feeling, nothing seems more appealing than being home.

And that's an update on Nathan.  Thankfully, his pain seems to have lessened.  I think the physical therapy, while helping straighten out his back, was aggravating his hip. He is nearly pain free unless he has a day of a lot of extra activity.

Maybe my next post will be an update on Daniel!