Not so great updates

In one half hour today, we received discouraging news for both of our daughters.  It's kind of funny how our life feels so very normal to us...yet if we would have thought ten years ago that R and I would each be on separate cell phones talking to separate doctors about separate daughters about significant medical issues, I think we wouldn't have believed it.  I remember when we were just parenting Noah, overwhelmed and exhausted.  Ha!

So, here's the scoop.  We finally have surgical news!  (Drumroll, please.). Violet will be having surgery SOMETIME in either Springfield, Mass, Boston, or Hartford on who knows what date with who knows what doctor.  Apparently, the Springfield surgical team is concerned about performing Violet's operation at their facility because they lack an ER or ICU.  If the meds don't work for V, her bleeding could get out of control.  If they decide it is not safe in Springfield, we are left BACK AT SQUARE ONE, needing to meet all new doctors in a new place.  Here is the really bad part.  IF Violet does not have surgery at Shriners in Springfield, most likely her surgery won't be able to be done as the Springfield team has been planning because Springfield has THE BEST ortho surgerical team.  As in, Boston sends their hardest surgeries to them.  If we have to have Violets final surgery done in Hartford or Boston it is much more likely that the surgical team will opt for a total amputation.  Simply because they aren't familiar enough with such a delicate procedure.   Violet's condition isn't common.

Can you IMAGINE if this little one has been through THREE surgeries and THREE times with a walker already only to have her foot amputated?  This is the very reason we picked Shriners in the first place....so she can have less pain as her bones grow and so that she has some measure of a foot to bear weight on.

So now here's what's going to happen.  The  Springfield team is going to consult with Violets hematologist about their latest concerns and will then meet as a team to decide.  Only trouble is that Violet's hematologist is Mia's hematologist...the one who just accepted a position as head of pediatrics in a PA hospital and is now in between here and there.  Yeah, cuz it's fun to coordinate medical care when you no longer have your favorite physician and you're left explaining who you are to a new dr. And you're trusting him to learn about your daughter and evaluate her history and make a life-changing decision.  oy to the vey.

OH!  And one more detail, violets surgeon shared on the phone while we talked that while we've been identifying Violet's blood disorder and getting ready for surgery, he has announced his retirement and won't be performing the surgery.  Thankfully, he is requesting permission to attend the surgery as an assistant in the room.

OK, so that's Violet.

While I talked to Violet's dr., R talked to Mia's dermatologist.  The biopsy results are in and (drumroll, please.) it doesn't match any rash in the computer data base.  They are going to call it dermatitis like they did a year ago, prescribe more steroid creams that we've already tried and see her in six weeks.

Again.

We could react to all this in so many ways and they've all sounded appealing, depending on the moment.   Currently I'm considering hot chocolate with a large splash of Bailey's in honor of today's snow flurries.  It sounds much better than trying to make sense of anything medically related.

After all, God's got this.  He already knows how this will go down.  Thank you all for supporting us and LOVING OUR GIRLS!