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!

I recorded Daniel's typical reaction to pain tonight.   I was trying to get a candid shot, so I was trying to avoid looking like I was recording him.  That means, I had the phone upright which recorded everything sideways.  Just rest your head on the desk while you watch.  ;)



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!

Jaw Trouble

It looks like I have to take Daniel in for his jaw.  This has been going on for over 3 years.  I don't know if I should take him to PT or the doctor for this recent trouble.  One is cheaper now, the other is cheaper over all.  One can only make certain moves to help him, but it might be enough.  The other can make a decision to send us elsewhere if he feels it's time.  Either one is going to be tricky since I don't have an appt and Daniel really needs relief NOW.

*sigh*  I was hoping today might be a quiet day.  I think that somehow I've been too wicked and am paying the price!  (I am "this" close to busting out in tears!)