Dear Stephanie,
Sure, I would be happy to share about how
Vi did not want to take the
meds, apparently they taste disgusting and
hour or so, she dozed off into
a drugged sleep- the nurse clapped, LOUD, beside her ear and she didn't flinch.
That's how we knew she was ready for the MRI.
The MRI machine (I got to sit
in the room with her) is extremely loud, and it isn't a continuous loud noise-
it's loud and makes various different sounds. At first I thought it was
malfunctioning or something because it had been making a continuous loud hum,
and then it started making short loud blasts instead. Come to find out, that's
just the way it works, sounds different when taking different pictures/different
angles. While she was in there, she had a tube in her nose to monitor her
breathing- it kept getting occluded (blocked) which would make the monitor look
like she wasn't breathing, which freaked me out, but then it would reset itself
and obviously it was fine.
I suggest you just ask them to
explain the different parts of the monitor to you before they go into their
little room. Once the MRI is going on, it will just be you (wearing earphones)
in the loud room with the MRI machine and Elena. The medical people are all in
a glassed in room apart, so you can't really ask questions then. Not that they
would be able to hear you anyway- the MRI machine is LOUD. Once they had shown
me where
I could see her heart beating,
I knew that she was fine and it was a problem with the monitor, not with her
breathing. It's funny, because I am a childbirth educator and I doula my
clients, and I KNOW how inaccurate the fetal monitors are- I KNOW that usually
it isn't that the baby is having trouble, but that the monitor is in the wrong
place or has shifted position... stuff like that... but when it was my baby,
sedated, it was still distressing until I knew where to see the heartbeat. It
was a different monitoring screen than I am used to.
Anyway, after the MRI, we went
back to the room where they had sedated her to begin with. We waited a few
minutes while the nurse told us what to expect from her for the rest of the
day, most of which did not happen. (What actually happened was, she slept for
about six hours and only woke up twice for less than 30 minutes each time but
they had said that she might wake up and think she felt fine and try to sit
up/walk/whatever and fall down- so we had to keep a hand on her all the time to
prevent her from falling over, etc. Wasn't much of an issue for us, since she
was asleep other than a few minutes of the time.) After getting our
instructions, we had to wake her up there in the recovery room.
She did NOT want to wake up
and cried, but crying was "good" because it meant she was awake
enough to be annoyed that we were bothering her to wake her up. She would not
have anything to do with the juice the nurse was trying to give her, but we
don't drink juice almost ever, so that was unsurprising. I did get her to
nurse, and she was happy to do that- comforting after the stressful morning. So
she nursed for a bit, and the nurse waited to see if she would throw up, which
is the most common side effect- that and the falling down thing, but although
she was "wobbly" she mainly just wanted to sleep and wasn't
interested in doing anything like sit up where she might have fallen over.
After about six hours from
when the meds were delivered, she woke up, hungry. She was still a bit clumsy,
for another hour or two, but overall was fine. As far as sedation experiences
go, it was pretty good, I thought. As far as the other medical things we've
gone through, it was good, I thought, because usually she screams hysterically
off and on through the whole thing- this was worrisome to me because of the
sedation, but overall, it was less nerve- wracking than holding her down while
she screams for hours. Sigh.
Chances are good that Elena's
MRI will be clear, because if she did have a tumor or something else visible
causing the low growth, she would likely have some other behaviors that you'd
be wondering about.
malformation! (That's not the
first thing one thinks of!) They just weren't huge things, just little weird
things... but they WERE things that immediately popped to my mind when I found
out about this. It was like
"OoooOOOoooohhh... maybe
THAT's why she does <xyz>..." I think for your own peace of mind,
you are doing the right thing by checking into having the MRI, before waiting
on the stim test.
If Elena’s IGF-1 was that low,
I am not sure what you gain by waiting, but then, I'm not a pediatric
endocrinologist either, so what do I know?!
What did they say the normal
range was for the particular lab that did Elena's? When does she turn 2?
Stay in touch, and let me know what happens and how she
does with the MRI... we see the first neurosurgeon on the 27th, and hope he
will order a spinal MRI. Then after we have that in hand, we will get a second
opinion from another neurosurgeon, and figure out what to do from there... I
can’t believe it’s still two more weeks until we
meet with the neurosurgeon- this sure has been a long two-month wait. But
Delilah
Dear Julie,
Thank you for your message. No,
And YES, the throwing up two
days in a row was right after breakfast, about 30 minutes after... and fine for
the rest of the day- very odd. Wonder what it means. She hasn't done it since
Wednesday, though...
It all seems so random! Some
days you'd hardly think there was anything going on at all, she might fall a
little more than usual kids, but that's it. Other days she is just miserable,
fussy, etc. with the head tilting thing and falling down and bonking her head
all day long and stuff. It's amazing how different she can be from day to day
and night to night. Last week we had FIVE nights in a row of misery, she woke
up in pain almost every 1-2 hours all night from
I have no idea why sometimes
it is worse than others but it certainly seems to be... on days when there is
not much going on, I think "Am I making all this up?! She acts perfectly
fine/normal!" but at times like last week when she was in pain and crying
and having trouble with basic motor functions like turning over in the middle
of the night, all night every night, I think, "We have to DO
SOMETHING!"
Delilah
Hi, Karat=pie,
Just wanted to remind you about your survey at
By the way,
Wish me luck= I NEED to get
these packets in the mail to the
Love,
Delilah
Dear Ginger,
In answer to your question, we
don't know what
Two more weeks until we see the
neurosurgeon. We met with the Early Childhood Intervention people today- she
qualified for services for speech therapy, and adaptive therapy, and they are
sending someone out to evaluate her for physical therapy for the way her right
foot turns in and she compensates with lifting her left shoulder/holding her
arm funny... which is not a good thing, because it can lead to scoliosis, which
I think is one of the risks of rGH therapy and associated problems with Chiari-
so we don't need a third thing pointing toward eventual scoliosis!!!
Love you- let me know how
things are going there...
Delilah
Dear Michelle,
I am thrilled to hear about the 3 childbirth class
possible clients (2 October, 1 November). I am considering doing some
advertising once I know what the situation with
Anyway,
IF I am going to have good availability (i.e. not going to be doing the brain
surgery right now), I am hoping to step up the business end of my life, because
our finances really suck, and because every time I teach and every time I
doula, I love it more. It is such a wonderful job! I just LOVE it. But I have
to wait and see about my availability first, before I do any advertising…
Dear Lori,
I am almost afraid to ask this, but what is the name of
the pediatric neurosurgeon you saw in
Balance, vertigo/dizziness,
headaches, and irritability seem to be Virginia's main symptoms- consistent
with having a headache really- not very friendly with almost anyone if she
doesn't know them very well (this is VERY unlike my other two gregarious
children), she tilts her head at odd angles, lays her head down on things...
falls down and/or off things, won't even attempt going down steps or even for
instance, to get down off the bathroom scale, she sits down on it- that is too
far for her to attempt to "step down"... and has pain in the night-
she kind of tries to turn over but ends up shrieking and rocking back and forth
without managing to flip over, if I help her, it calms her- she can turn over
by herself at other times, and most nights... sometimes (rarely) she throws up-
not sick, just out of the blue she pukes, and goes back to what she was
doing... sometimes she holds the back of her head and cries. (Breaks my heart.)
Yesterday we went to
Musikgarten and she was having a great time, doing the hand motions, etc. and
then we did this song where we spun our toddlers in a circle, and she started
arching her back and screaming. I got her calmed down but she refused to
participate any more in the class after that, she spent the rest of the hour
sucking her thumb sitting in my lap quietly.
Anyway, she is only 18 months
old and can't tell me in words what is going on, it is hard. And some days, she
acts as normal as you can imagine, and I think I must be making it all out of
nothing.
No matter what Dr. Sacco says,
I am going to get a second opinion, probably from Dr. Frim in Chicago, who many
of the parents here have used. He said they would give me a second opinion
online if possible without us even having to go up there, if I had the records,
MRI's, etc. sent to him. He and his nurse were both very kind in the emails we
exchanged.
My ideal scenario would be
that both the
Delilah
Dear Betty,
Are you still available to go to Children's with me on
Monday the 27th? If not, I have other folks I can call, but if you would be
free, that would be great.
Delilah
I know you should be writing on your paper for the conference, and probably you are. But if you get a minute, I would appreciate any feedback, as you are such an experienced advocate for your kid with medical folks.
I have been brainstorming
about what I see as the pros and cons and things to consider with regard to
treating Virginia, and want to put my thoughts together into an easy to scan,
simple format so that hopefully this neurosurgeon and I can address all my
concerns quickly (because rumor has it that appointments are hard to come by
and then go by FAST once you're in there, and I've waited nearly two months so
I don't want to forget anything).
I went and obtained copies of
Vi's MRI films today, and I am going to get online and compare them with
whatever images I can find, to kind of form a mental image of what we are
dealing with, and I have been trying to learn the vocabulary as well as see
what other people's neurosurgeons have said... the trouble is that the symptoms
and severity of the malformation vary so widely, and the surgical options and
the outcomes from the surgeries also vary so widely... with all the reading I
have done for two months, it is VERY hard to extrapolate other people's
experiences to how it might or might not apply to Virginia, and it has made me
quite suspicious of physician opinions on this matter. I would estimate that
over half of the parents whose children have this, have been misdiagnosed (told
it existed but was not related to the symptoms they were experiencing when
actually it was, or not even told that the malformation was there until
symptoms persisted and they went to a different doc who said, yeah, look, right
here- here it is, this is related to all those issues) or treated poorly
initially (either surgery done that needed to be "fixed" later, or
they were told that surgery was not needed and then their child suffered
permanent damage or had to have a more invasive surgery later because the
problem worsened, etc.)... It has made me very anxious to hear what the doctor
has to say- but yet made me want to get a second or even a third opinion, and
hope that they match up, because there does not seem to be much consistency in
diagnosis, treatment, or outcome. ARGH!
Anyway, without going into the
doctor- what I think he will say and what I think the best case scenario would
be for him to say, as best as I can tell... is that we should try the growth
hormone therapy while we monitor her, every <x time period> meaning me
keeping track of her symptoms and them doing periodic MRI's, and see if doing
the rGH worsens the symptoms of the Chiari before we proceed to surgery.
I do not want Virginia to have
to suffer to a point whereby we could have prevented tons of pain for her
because of me being stubborn and not pursuing surgery- on the other hand, right
now, her on- again, off-again but not constant pain and lack of balance seems
to me not to merit the risks of brain surgery, especially one that has such
spotty success rates.
In my opinion, the worst case
scenario would be him blowing off our concerns and saying we don't need to
worry about the Chiari and should just do the growth hormone and place no
restrictions on Virginia's behavior or monitor her at all- because hello, she
has issues already at 18 months, and this tends to get worse as a person gets
older, so that would make me think he is clueless about Chiari, if he said that
or wouldn't answer my concerns.
Not the worst-case scenario,
but certainly not best-case scenario, would be him saying we should do surgery
now. I definitely want another opinion before moving in that direction.
Another not worst-case but not
best-case scenario, would be him saying let's not do the growth hormone OR
surgery, but just carry on as we are now for awhile and see what happens, say,
a year from now. In a way, I would kind of like that most- but in another way,
that just means another year of uncertainty and feeling like I
can't plan for the future at
all.
Actually, I feel like I can't
plan for the future nor will I be able to, regardless of what he says, because
who knows how any of it will pan out? Living in limbo is disorienting for
someone who is goal-oriented. I am definitely learning better how to live in
the moment and savor every day, and that is a good thing. But not being able to
work towards goals gives me a kind of emotional vertigo. I am going to have to
let go of being a control freak before this is all over, because it simply
doesn't work for this situation. Very hard for a Type A...
OK, anyway... if you can look
over my list of pros/cons/factors and tell me if I am leaving anything off or
if I said it differently, it might get a better response from the doctor, that
would be really helpful. I have heard that this doc is very competent but that
his bedside manner is brisk.
Delilah
Dear Kari,
I
almost had a heart attack when I saw re Andy and your backup computer. Um, have
you considered password protecting that sucker so he can't get onto it?! LOL
Last week I was really a mess-
well, you know that, from my posts. I am feeling pretty peaceful and hopeful
today. (Of course, if I don't get the news I expect- I am definitely expecting
"the best possible news" at the doc today- then I may be in another
tailspin for a bit!) I just love that baby SO MUCH! She's worth it, no matter
what. AND, God created her just the way He did- she was not an accident, in how
she was formed. He WILL bring good from this, as He promises in Romans, if we
give the situation to Him and are called according to His purpose. I truly
believe that. I don't have the big picture on what purpose He could have for
this, but I recognize that's because I am a creature, not the Creator- there IS
a big picture whether I can see it or not.
Thank you so much for
everything. You are a blessing to me.
Love,
Delilah
Virginia's Story Index Page
Next Page
Virginia's Story Photos