Hungry Like the Wolf

Julia and I were sitting with Wyatt in the waiting room on Thursday, eagerly anticipating our third doctor appointment in three days.  (We're now one obscure doctor away from Obscure Doctor Bingo - if anyone knows a good kinesthesiologist, let us know.)  Wolf began to fuss a little bit, so I started to sing him a song.  But then I realized that I didn't know what to sing him.  Each of our previous two children had "their" song; Ben had "Sweet Child of Mine" and Micah had "My Girl" (with the words changed to "Micah" instead of "My Girl" - either way, Micah never seemed to calm down when we sang; I think he knew that the song wasn't actually about him).  So Julia and I began discussing what Wyatt's song would be. 

Of course, the first thing that came up was "Hungry Like the Wolf" by Duran Duran.  Perfect! 

"Okay, so let's try singing that one."

"Ummmm...why don't you start?"

"Alright.  Uhhhh...sing me a little bit to get me started."

"Duh duh-duh dum...hungry like the wolf..."

Momentary silence.  "Yeah, that didn't really help at all."

"Well that's all I know!"

"Let's see...[thinks and starts humming]...no, that's 'Ordinary World'...[starts humming again]...no, that's 'Rio Grande.'  I don't know, I can't think of it."

And so it went, until we finally got into the doctor's office and figured out the chorus.  By then, though, we'd realized that "Hungry Like the Wolf" was probably not an appropriate song to sing to a baby (Julia did not think it would be better if she did the moaning parts at the end of the song).  Anyway, we're still looking for a good song for Wyatt (we also went through a bunch of Eagles songs, most of which were pretty inappropriate as well - "Seven Bridges Road" was our only prospect).

In other news, Wyatt saw a lot of doctors this week, but we didn't get many answers.  The occupational therapist just took a look at the way he moved and responded to stimuli.  She said he was doing okay in that regard and gave us a few tips on how to start developing his motor skills even though we can't move him around too much.

The endocrinologist was helpful.  He talked to us quite a bit about Pamidronate, which from our own research we know is the medication that most OI patients obtain.  Pamidronate helps strengthen the bones by hindering the bone cells that destroy bone (yeah, this is a bit confusing, but basically EVERYONE has bone cells that both build and destroy bone tissue - it's just that OI patients have too few of the building cells, which creates an imbalance that weakens the bone).  It also helps straighten bones and make babies more comfortable.  We have read quite a bit of testimony from other parents that says their children usually hit important milestones (crawling, standing up, walking, etc.) right after receiving Pamidronate.  The doctor said that, assuming this is OI (which still isn't 100% confirmed), we would start pretty soon on Pam.  He told us that the medicine is normally given intravenously over two hours, however, it could have some negative side effects in infants.  To safeguard against the possibility of an adverse reaction, the doctors would probably stretch out the initial treatment to a day or more and keep Wolf in the hospital to monitor his response to the treatment.  The good news is that there are no long-term negative side effects that they know of, and the treatment has been quite helpful in a majority of OI patients (possibly reducing fractures by as much as 90%!!!).  The doctor said that we would receive the results of blood tests within a couple weeks, and assuming those indicated OI, we would start the Pam treatment within a couple weeks after that.  He said that he would even be comfortable starting the treatment if the tests results weren't back yet.

The geneticist didn't really have anything new for us, and she was still skeptical about assuming that Wolf's problem was OI.  She told us that if this was a rare type of OI, the blood tests might come back negative.  In that case, we would need to wait for the skin sample tests, which will take an additional three weeks.  Because the Pam treatment can be a little tough on babies this young, unlike the endocrinologist, she wants to wait until we get a firm diagnosis before starting it.  She did tell us that she's never seen anything quite like this (timeline: positive it's OI, then pretty sure it's not OI, then back to almost positive it's OI) in anyone before.  Apparently our child is medically unique and will be studied carefully by the Kaiser doctors.

So really nothing new in terms of Wolf's diagnosis.  We have a plan for treatment, which is good.  And even waiting a month or two isn't a big deal - from what we've read, most doctors start the treatment in OI babies around three months.  The sooner the better, I think, because his bones are so bowed, but it doesn't make sense to put him through something traumatic if it won't help.  Overall, I think our doctors are being reasonable about how they're handling this.  And when we told them we were going to send in an application to Shriners Hospital, where they have orthopedic experts, they encouraged us to do that. 

Unfairly, my assumption was that our doctors would want to keep all his treatment in-house, either because of the money involved, or because their egos would get in the way.  This is not the case at all.  Our doctors genuinely want the best for Wyatt, and encourage us to take whatever steps necessary to see that happen, even if it involves seeing other doctors from a different hospital.  When you hear horror stories about the way some patients are handled by the medical system, we expected the worst.  It has been a blessing that the doctors we've seen have been high quality and not at all difficult to deal with.  If any of our doctors wind up reading this, I apologize for the negative assumption!  You all have been great! 

At the moment we're still in a bit of limbo - waiting for test results and waiting to hear back from Shriners.  In the meantime, Wolf is growing and has been feeling better and better.  He doesn't seem to have any pain from his leg at this point, and we go in to get his harness removed next Tuesday.  He still hates it when we change his diaper, but that comes with the territory.  We'll see how the next month goes for him.  Thank you again for all your thoughts and prayers!