 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
Our
Journey:
Journey:
Avalon's Army of Angels
| January 29, 2009 Dr. Kosnik and Mason |
Avalon had a neuro-surgery clinic appointment
with Dr. Kosnik today. When you read the next
entry for today's date - about the Black Tie, Blue
Jacket fashion show...you'll see that our last two
days have not worked out as we had anticipated.
However, the snow fiasco and scheduling
SNAFU, certainly didn't hurt Aurora's feelings in
light of today.
For the last several months, Aurora has
generously offered to stay home with Anam and
Ambrosia as often as possible for Avalon's
appointments. It keeps me from having to battle
little man while I attempt to have rather serious
discussions with doctors. Sometimes it keeps a
snooty little person from infecting other families
in the hospital. All around, its a nice option -
particularly for neuro-surgery days, which often
last 3-5 hours. Today, the weather and the Blue
Jackets kindly arranged for Christina to be
trapped at our house with Aurora. Glory be!
Christina loves the little ones, and Aurora loved
the break. Happiness abounded...
As for the appointment itself, it was pretty short
and sweet. I asked Dr. Kosnik about my recent
concerns with Avalon: the transient hearing
loss, the loss of taste one day, the enormous fall
down the stairs, and Anam's whack-a-do history
with her. The hearing loss and taste issues
were easy answers. He said that dry winter air
can mess with sinuses and Eustachian tubes,
don't give those another thought. When it came
to the stairs and Weeble incidents - the
discussion got more interesting.
First of all, he said I handled everything
correctly. I watched for the appropriate things,
and noted the proper behaviors. When I
described the Weeble Anam hit Avalon with, and
the fact that her temple had been so sore she
wouldn't allow us to touch it for several
weeks...he agreed that she'd probably had
micro-fractures. He also said I'd guessed
correctly, there's not a darn thing we could have
done about them. He said follow your gut, you
did everything right. "And please try to keep her
brother from trying to kill her." Easier said than
done. He had all girls...
As for the stair incident, that was a whole
separate discussion. I told him that usually its
two or three stairs she falls down at the bottom.
This time it had been the entire flight of them...all
the way down...all wood stairs... He said I'd
again done the right thing with what I watched
her for. He agreed again, that she hadn't
needed to be seen. I told him we suspected that
she may have dented the shunt, because it felt
different to us, and that I'd seen it hit the stairs.
He ran his hand over her head, and said, "Its not
something I'm going to go in after..." In Dr.
Kosnik speak, that probably means he felt the
dent to - but its not worth risking surgery over. A
lot of the time, Dr. Kosnik requires a bit of
interpretation.
I gave Dr. Kosnik the written and verbal reports
from Dr. Benes. He was surprised by her R.
Brain Stem findings - and had me follow him out
to look at the MRI images. As he cruised
through them, he found it - the pictures that
showed exactly what Dr. Benes had
hypothesized. The dropped shunt entered in
the R. Brain stem, crossed over and terminated
in the Left - causing the most damage there. He
gave Dr. Benes kudos for finding it. While we
were looking at the MRI, I asked him if he could
possibly print out a few images for me to show
Nick. He's never seen any of them. I tried
getting a copy of the MRI to be able to show him,
but we can't get it to work on our computer. Its
not fair that he's been so left out, she's his
daughter too.
Dr. Kosnik did us one better. I chose one image,
and he chose one, and he had them printed on x
ray film for me. They are large and clear, and
perfectly show Nick what I've been talking about.
When I finally had the time to share them with
him late tonight - he was a wreck. He's heard
the descriptions from me, he's seen the
aftermath. But to finally see the cold hard facts
with his own eyes...I don't think he was prepared
for it. Its disturbing, there is no doubt about
anything when you see it. There just isn't
supposed to be a stick in your brain...its eerie.
Dr. Kosnik decided he doesn't need to see
Avalon for 3 months. Frankly, there is little he
can do to help her now. He has already said,
he'll only remove the shunt if she gets and
infection, or develops an outstanding problem.
He's afraid of disturbing the new catheter, in fear
it may shift the dropped one, causing even
further damage. I understand his position and
trust him implicitly...but I can't help feeling that
she's got a ticking time bomb in there. My
illogical mom-heart just wants the evil thing out.
After Dr. Kosnik, Avalon and I went to the gift
shop to pick out something for our little friend,
Mason. Mason is currently in-house, and his
parents are worried sick. Mason started acting
very weird over the last few weeks. When his
mom, Andrea, wrote about it on his website, she
asked if anyone had ideas. I'd written back and
suggested his behaviors sounded like Avalon's
when her pressure is up. Andrea said she
planned on printing my email and asking the
doctors about it the next day when they took
Mason in. She knew something was up and had
demanded they check him out further to get to
the bottom of it. Sure enough, an MRI showed
swelling in the brain, and high pressure. As of
this morning, they were waiting on test results to
see if it might be a CNS (Central Nervous
System) cancer relapse. Avalon and I decided
Mason needed a dragon on his side if he was
going to have to fight cancer again.
We took Mason's Webkinz dragon up to J-5 to
drop off for him. Andrea came out to the hall
long enough for a hugs from both of us. Mason
had undergone an LP that morning, so his
pressure was down enough they were getting a
few good hours, while they awaited the results.
Andrea was rattled to the core - and my heart
ached seeing my friend face the worse news she
could imagine. I cannot begin to explain the
look, or the feeling of helplessness as you watch
your friend in pain. All I could do was hug her,
give her Mason's dragon, and hope beyond
hope that the doctors were going to proven
wrong...that it wasn't cancer, just maybe damage
like Avalon...
The whole way home I said silent prayers of
anguish for Andrea and Mason's father and
brother. I said prayers of anger and frustration
for what's been done to Avalon. I asked for a
peaceful heart to try to deal with that anger, and
to help me grieve what we've lost. But mostly, I
said prayers of Gratitude, for having my
daughter in my car with me...headed home...and
not on J-5. I'm grateful, and very, VERY mindful
of "There but for the Grace of God go I." I don't
take the gift of today lightly.
with Dr. Kosnik today. When you read the next
entry for today's date - about the Black Tie, Blue
Jacket fashion show...you'll see that our last two
days have not worked out as we had anticipated.
However, the snow fiasco and scheduling
SNAFU, certainly didn't hurt Aurora's feelings in
light of today.
For the last several months, Aurora has
generously offered to stay home with Anam and
Ambrosia as often as possible for Avalon's
appointments. It keeps me from having to battle
little man while I attempt to have rather serious
discussions with doctors. Sometimes it keeps a
snooty little person from infecting other families
in the hospital. All around, its a nice option -
particularly for neuro-surgery days, which often
last 3-5 hours. Today, the weather and the Blue
Jackets kindly arranged for Christina to be
trapped at our house with Aurora. Glory be!
Christina loves the little ones, and Aurora loved
the break. Happiness abounded...
As for the appointment itself, it was pretty short
and sweet. I asked Dr. Kosnik about my recent
concerns with Avalon: the transient hearing
loss, the loss of taste one day, the enormous fall
down the stairs, and Anam's whack-a-do history
with her. The hearing loss and taste issues
were easy answers. He said that dry winter air
can mess with sinuses and Eustachian tubes,
don't give those another thought. When it came
to the stairs and Weeble incidents - the
discussion got more interesting.
First of all, he said I handled everything
correctly. I watched for the appropriate things,
and noted the proper behaviors. When I
described the Weeble Anam hit Avalon with, and
the fact that her temple had been so sore she
wouldn't allow us to touch it for several
weeks...he agreed that she'd probably had
micro-fractures. He also said I'd guessed
correctly, there's not a darn thing we could have
done about them. He said follow your gut, you
did everything right. "And please try to keep her
brother from trying to kill her." Easier said than
done. He had all girls...
As for the stair incident, that was a whole
separate discussion. I told him that usually its
two or three stairs she falls down at the bottom.
This time it had been the entire flight of them...all
the way down...all wood stairs... He said I'd
again done the right thing with what I watched
her for. He agreed again, that she hadn't
needed to be seen. I told him we suspected that
she may have dented the shunt, because it felt
different to us, and that I'd seen it hit the stairs.
He ran his hand over her head, and said, "Its not
something I'm going to go in after..." In Dr.
Kosnik speak, that probably means he felt the
dent to - but its not worth risking surgery over. A
lot of the time, Dr. Kosnik requires a bit of
interpretation.
I gave Dr. Kosnik the written and verbal reports
from Dr. Benes. He was surprised by her R.
Brain Stem findings - and had me follow him out
to look at the MRI images. As he cruised
through them, he found it - the pictures that
showed exactly what Dr. Benes had
hypothesized. The dropped shunt entered in
the R. Brain stem, crossed over and terminated
in the Left - causing the most damage there. He
gave Dr. Benes kudos for finding it. While we
were looking at the MRI, I asked him if he could
possibly print out a few images for me to show
Nick. He's never seen any of them. I tried
getting a copy of the MRI to be able to show him,
but we can't get it to work on our computer. Its
not fair that he's been so left out, she's his
daughter too.
Dr. Kosnik did us one better. I chose one image,
and he chose one, and he had them printed on x
ray film for me. They are large and clear, and
perfectly show Nick what I've been talking about.
When I finally had the time to share them with
him late tonight - he was a wreck. He's heard
the descriptions from me, he's seen the
aftermath. But to finally see the cold hard facts
with his own eyes...I don't think he was prepared
for it. Its disturbing, there is no doubt about
anything when you see it. There just isn't
supposed to be a stick in your brain...its eerie.
Dr. Kosnik decided he doesn't need to see
Avalon for 3 months. Frankly, there is little he
can do to help her now. He has already said,
he'll only remove the shunt if she gets and
infection, or develops an outstanding problem.
He's afraid of disturbing the new catheter, in fear
it may shift the dropped one, causing even
further damage. I understand his position and
trust him implicitly...but I can't help feeling that
she's got a ticking time bomb in there. My
illogical mom-heart just wants the evil thing out.
After Dr. Kosnik, Avalon and I went to the gift
shop to pick out something for our little friend,
Mason. Mason is currently in-house, and his
parents are worried sick. Mason started acting
very weird over the last few weeks. When his
mom, Andrea, wrote about it on his website, she
asked if anyone had ideas. I'd written back and
suggested his behaviors sounded like Avalon's
when her pressure is up. Andrea said she
planned on printing my email and asking the
doctors about it the next day when they took
Mason in. She knew something was up and had
demanded they check him out further to get to
the bottom of it. Sure enough, an MRI showed
swelling in the brain, and high pressure. As of
this morning, they were waiting on test results to
see if it might be a CNS (Central Nervous
System) cancer relapse. Avalon and I decided
Mason needed a dragon on his side if he was
going to have to fight cancer again.
We took Mason's Webkinz dragon up to J-5 to
drop off for him. Andrea came out to the hall
long enough for a hugs from both of us. Mason
had undergone an LP that morning, so his
pressure was down enough they were getting a
few good hours, while they awaited the results.
Andrea was rattled to the core - and my heart
ached seeing my friend face the worse news she
could imagine. I cannot begin to explain the
look, or the feeling of helplessness as you watch
your friend in pain. All I could do was hug her,
give her Mason's dragon, and hope beyond
hope that the doctors were going to proven
wrong...that it wasn't cancer, just maybe damage
like Avalon...
The whole way home I said silent prayers of
anguish for Andrea and Mason's father and
brother. I said prayers of anger and frustration
for what's been done to Avalon. I asked for a
peaceful heart to try to deal with that anger, and
to help me grieve what we've lost. But mostly, I
said prayers of Gratitude, for having my
daughter in my car with me...headed home...and
not on J-5. I'm grateful, and very, VERY mindful
of "There but for the Grace of God go I." I don't
take the gift of today lightly.
| On the way home from the hospital. It happens after nearly every appointment. Avalon's energy level is sooo low, she's easily exhausted. She fools people by being bouncy and friendly at appointments or events. They don't realize how hard she crashes afterward. As a family, we're learning how to "guard" her energy, so she can enjoy events. Her physical medicine Dr. says it may be years before she figures it out for herself. |
| Caught you mom! |
| Chilling out, watching TV in the waiting room. |
| Aurora made pudding since Christina was visiting. Anam loved it...but it had quite the effect on him! |
| Sleepy or not...she's still cute! |