Thursday, March 25, 2010
hello everyone. zak here.
obviously, we are terrible bloggers; we feel a little guilty about it because a) we're STILL trying to write back to everyone and b) we know that folks are waiting to hear some news.
well, we've got some-- and given our track record so far, it might be good to assume that "no news is good news" because so far, things are going ok. we think.
since the last posting, flossie has gotten her pavlic brace off, and we've seen (what seems like) quite a few doctors, for quite a few different reasons to figure out what's going on and what's to be done. we've really liked ALL the people/ teams we've seen.
as far as we can tell, there's been no new breaks/ major fractures, which --while by no means says "everything's ok"-- is kind of great news; another serious fracture, say, a week or 2 after the last one...would have at least pointed to a very different experience. what has happened is that we're still just very careful with her, and that seems to be working to some extent, which is GOOD.
there is still some considerable concern about cracks/ fractures we CAN'T see: the "microfractures" that were showing up in 10+ places during those early X rays, the scariest of which were occurring in her spine.
these are the breaks that might have a cumulative effect on her bone structure as a whole-- if these breaks and fractures are always occurring, the bones may never be able to develop properly, leading to some potentially serious difficulties down the line (weight bearing, limb length discrepencies, proper spine development, etc). and THOSE are the breaks that we can't see, or be aware of.
so-- it took us quite a while to get comfortable with the idea, but on the advice of the geneticist, endocrinologist, and the OI ortho specialist, Elise is going to start an ongoing treatment with a drug called Pamidronate. we've been told this is standard protocol for serious OI cases. Pamidronate is a drug that's been in use for a while, and it's in the family of drugs commonly given to people with Osteoporosis. basically, it inhibits the normal breakdown of bones.
apparently, it's a pretty mild drug (all things considered), but the real hard part is that it's given via infusion (through an IV) for 4 hours at a time, 3 days in a row, repeated every 2-3 months-- possibly until puberty,when the bones stop growing and the severity of OI seems to decrease.
it took us some time to come around to this, but we're on board. the idea of our baby not even 6 months old hooked to an IV is, let's face it, not a fun idea by any stretch of the imagination. and it's going to suck. we know that.
but: so does a broken arm-- there's the pain involved there, not to mention the weeks of immobilization and the possible ongoing structural stuff (which is the biggest concern in all of this). and if it helps (and it seems like it will...) it will be fantastic.
so, that's what we're doing.
and it's starting this week: friday, saturday and sunday, she'll be getting the treatment for the first time.
other than that, things have been relatively...normal (all things considered). we're just getting used to everything. i'm still teaching and doing whatever the hell it is that i do, isaac is still being awesome 27 hours a day, and anne just passed her nursing boards yesterday (for which we're all really proud of her, especially considering all the stuff that's been going on lately).
we still really and sincerely appreciate all the well wishes and support you all have thrown our way.
we'll let you know how it all goes.
our thanks and best,
zak, anne, isaac and elise
obviously, we are terrible bloggers; we feel a little guilty about it because a) we're STILL trying to write back to everyone and b) we know that folks are waiting to hear some news.
well, we've got some-- and given our track record so far, it might be good to assume that "no news is good news" because so far, things are going ok. we think.
since the last posting, flossie has gotten her pavlic brace off, and we've seen (what seems like) quite a few doctors, for quite a few different reasons to figure out what's going on and what's to be done. we've really liked ALL the people/ teams we've seen.
as far as we can tell, there's been no new breaks/ major fractures, which --while by no means says "everything's ok"-- is kind of great news; another serious fracture, say, a week or 2 after the last one...would have at least pointed to a very different experience. what has happened is that we're still just very careful with her, and that seems to be working to some extent, which is GOOD.
there is still some considerable concern about cracks/ fractures we CAN'T see: the "microfractures" that were showing up in 10+ places during those early X rays, the scariest of which were occurring in her spine.
these are the breaks that might have a cumulative effect on her bone structure as a whole-- if these breaks and fractures are always occurring, the bones may never be able to develop properly, leading to some potentially serious difficulties down the line (weight bearing, limb length discrepencies, proper spine development, etc). and THOSE are the breaks that we can't see, or be aware of.
so-- it took us quite a while to get comfortable with the idea, but on the advice of the geneticist, endocrinologist, and the OI ortho specialist, Elise is going to start an ongoing treatment with a drug called Pamidronate. we've been told this is standard protocol for serious OI cases. Pamidronate is a drug that's been in use for a while, and it's in the family of drugs commonly given to people with Osteoporosis. basically, it inhibits the normal breakdown of bones.
apparently, it's a pretty mild drug (all things considered), but the real hard part is that it's given via infusion (through an IV) for 4 hours at a time, 3 days in a row, repeated every 2-3 months-- possibly until puberty,when the bones stop growing and the severity of OI seems to decrease.
it took us some time to come around to this, but we're on board. the idea of our baby not even 6 months old hooked to an IV is, let's face it, not a fun idea by any stretch of the imagination. and it's going to suck. we know that.
but: so does a broken arm-- there's the pain involved there, not to mention the weeks of immobilization and the possible ongoing structural stuff (which is the biggest concern in all of this). and if it helps (and it seems like it will...) it will be fantastic.
so, that's what we're doing.
and it's starting this week: friday, saturday and sunday, she'll be getting the treatment for the first time.
other than that, things have been relatively...normal (all things considered). we're just getting used to everything. i'm still teaching and doing whatever the hell it is that i do, isaac is still being awesome 27 hours a day, and anne just passed her nursing boards yesterday (for which we're all really proud of her, especially considering all the stuff that's been going on lately).
we still really and sincerely appreciate all the well wishes and support you all have thrown our way.
we'll let you know how it all goes.
our thanks and best,
zak, anne, isaac and elise
Monday, February 8, 2010
We've got a few doctor's appointments this week- one with the ortho team and another with an endocrinologist. We'll let you know if we learn anything new. Tomorrow, hopefully, we get to take off her Pavlik harness. She's been wearing it a few weeks to immobilize her legs, mostly for comfort. After marinating in breast milk and baby grime for 4 weeks, I'm excited to give her a bath.
It's been a month without any big fractures, which is reason to celebrate.
We've been overwhelmed by all the support we've received through this. Family/Friends new and old, near and distant, you've all been awesome. And we love you.
Now, here's today's antidote to cabin fever:
The Summer Day
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean--
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down--
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is is you plan to do
With your one wild and precious life?
Mary Oliver
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean--
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down--
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is is you plan to do
With your one wild and precious life?
Mary Oliver
Thursday, January 28, 2010
THANK YOU
zak again.
i just wanted to write a quick post saying thank you.
we hope to get to see or talk to each one of you sooner than later, but in the meantime-- i don't really know how to express what all of your calls and emails have meant to us.
the offers of help, love and support have been...as i said; i can't explain, other than to say thank you, from all of us.
more soon.
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