The thing is, even in the midst of this news for me, I can see the hand of God clearly on the situation, this is a congenital problem and it would have been forming at exactly the time Isaac's hypoglycemia was manifesting and we met the endocrinologist for the first time under such dramatic circumstances. At that time, it was hard to imagine what good could come from Isaac's sudden unconsciousness and the lack of a treatable/manageable diagnosis, but if it all hadn't happened as it did, we wouldn't know his pediatric endocrinologist, she wouldn't be following him as she has been for these two years, she wouldn't have seen Virginia as soon as she did, and we wouldn't know how to help our little girl or maybe even that she NEEDED help. So even if it took a couple of years for the "why?!" to be revealed, I can see that God's timing is 100% perfect for me and that I can trust Him with my children.
At the time, I could see that I did come to 100% acceptance of having three children in that emergency room with Isaac, which was a blessing in turning my attitude around from my fears of "letting go of control"... since "I" had not planned to have three and didn't know if I could handle it. I thought that perhaps THAT was the purpose in his hypoglycemic crash, because surely that tremendous good came from it. But now I can see even more purpose than before, and even with this new understanding, I am sure that I can STILL only see a tiny part of the big picture. As we are reminded in Isaiah 55, God's thoughts are not our thoughts.
We have several weeks before we
will see the neurosurgeon, which is good. Hearing that he had moved us to the
top of the schedule would not have been reassuring, any more than getting a
phone call about test results from the doctor instead of the nurse! I think it means that her growth hormone therapy
will be delayed, though. Guess we'll be living in the 3-6 month clothes awhile
longer. And it leaves me wondering for now... wondering
"When she does that weird tip-her-head-over-to-the-side thing, is that
because of this? When she suddenly falls down off of whatever she has climbed
up onto, is that because she's a new walker or because of this? Was she such a
late walker because of this? Are her poor sleeping habits because of this? What should I not let her do because of this, to protect her
health?" etc.
On a more selfish level, I am feeling so torn- I must really strain to trust God's timing. I have to remind myself that I don't need to barrel ahead into the birth community, it is okay to move forward slowly and steadily of that. There is no deadline. If I will be doing this for many years (which I will, if it is His will for me, because surely I love it and would love to do it for years), then it is okay to take things slowly. I know this in my head, but since my personality is more given to "barreling ahead", it is sometimes hard for me to rein myself in and let God lead me.
I
have Carmen's and Dawn's births to attend, and then I will just see who signs
up for classes. Hopefully I can attend a birth per month and teach two or three
couples per month- that would be just wonderful- but that is ME talking, and I
have to be prepared to go where God leads me, whether that is "my business
taking off" i.e. teaching lots of classes, getting better at it fast,
attending lots of births, gaining experience and expertise quickly, finishing
my certification quickly, etc... OR whether the leading is for me to proceed
slowly and let my family continue to take the biggest part of my time for now.
At the moment, it seems like the latter is going to be my situation, but of
course life can change on a dime!
When
I think about it, I know that in two years, Virginia will be in preschool,
Isaac and Vanessa will both be in grade school, and no one will need me at home
NEARLY as much- plus hopefully word of mouth will be out- I will have gotten
more clients that way, and I will be two years' worth of better at it... and I
can trust that God's timing is perfect. I have to be willing to be patient.
And, God forbid, if things aren't better with
(But
my heart yanks me strongly toward the birth community, and doing our finances
pressures me toward earning money, and the medical bills do that to me too... ick ick ick!
But I just know that God can balance these needs. Which is a good thing because
I don't see how *I* can!)
I'm
just rambling along, thinking on paper. I am grateful for the peace I have for
today overall. I sense that I am being prepared for what I will need to deal
with in the future, and I am pretty calm about it. I was so sad on Monday,
because I just didn't want this to be the answer. I don’t want there to be
anything “wrong” with my baby! But I am grateful it's not a tumor, and when I
look at
I am
continuing to pray for the birth center to have just the right amount of
business, and the same thing for me- that God sends me only the people I can
help and the ones who need what I don't have to offer, He directs elsewhere!
When I get tense- about the money, about certification, about “how I look” to
the world for not "getting ahead", and about what
It is definitely not me keeping calm, that much is clear-
it's all God bearing me up, because trust me, when I try to lean on my own
understanding and strength, I feel sick to my stomach and panicky at the very
thought of what might be ahead for my precious toddler. But I WILL trust that God
created
Delilah
Dear Barbara,
Tell you it can all be fixed? Well... there are no guarantees of anything in life, you know? I too hate the wait until the 27th, and yet, I am choosing to think of it as a good sign. The neurosurgeon has already seen her MRI, and he didn't feel that it necessitated canceling someone else's appointment to move her up on the schedule, he said that next available was okay for her. So to me that seems more positive than if he had felt it was necessary to do the appointment immediately. I am hoping they will say that her Chiari is not very severe and doesn't require surgical treatment. But of course, I was hoping for a clear MRI too. Heck, come to think of it, I was hoping there were no growth hormone problems.
So overall, what I cling to
every day is that I adore her, she is precious and perfect to me, and that God
created her just as she is, and will give us what we need to get through with this,
and to be wise stewards of her health if we turn to Him. That is what I am
hanging my hat on. Considering what all might be involved in this diagnosis is
too hard for me right now, and impossible until after we meet with the
neurosurgeon. And frankly if he recommends brain surgery, I will probably get a
second opinion, just to make sure. So for now, I am just cherishing
We might still have options
and there is still some possibility that this won't be an issue in the near
future. No point fretting any more than necessary until we are sure. I know
it's hard. For me, too.
Love,
Delilah
Dear Wendy,
I'm still researching, in
preparation for
Do you know what the
measurement of your son's ACM is?
Does it sound like I have it
right, from what you have read/ researched? It sounds like to make a good
decision, we will have to have some good information about the specific shape
and placement and size of
In the meantime, rGH is on hold, and it's a good thing she's so young and
has time for catch-up growth later, since she's really not growing to speak of
for now... she has grown one pound in five months, and not even an inch. (And
she is still wearing mostly 3-6 month clothes, although she can wear a few 6-9
month outfits.) I love her so much it hurts my heart even to think of all this
stuff.
Delilah
Dear Becky,
Yes, I'm doing okay. Lots of research
while I wait for the neurosurgeon appointment on the 27 September, which seems
like it's still a long way away. I'm bracing myself for whatever comes
next. As long as it doesn't involve losing
I called today to get the
school district to come and evaluate her and see if she has speech delays or
gross motor delays. I would like to know as much as possible about how the ACM
is affecting her right now and if so, to what extent, before I meet with the
neurosurgeon and discuss options and what would be best to do about it, if
anything.
I gave up and took the tags
off another 3-6 month dress yesterday. I had been saving it for a baby gift for
someone else since I kept hoping
Love,
Delilah
Dear Debra,
Yes, the Chiari
malformation may be unrelated in terms of origin, one being a congenital
malformation and the other being an idiopathic endocrine problem. (Although
when something is idiopathic, how can we really say for sure?) However, due to
the proximity of the ACM and the pituitary gland, treatment of the GHD may be
affected. If the ACM is causing a partial obstruction of the spinal fluid
(which is likely, given the size of her ACM, which is 9mm, but I haven't met
with the neurosurgeon or seen the MRI report so I’m not sure of the shape of it
or extent of obstruction yet) and then we introduced rGH,
it might cause the pituitary to swell- a common side effect of the GH
replacement therapy and usually not a problem, but in this case, a swollen
pituitary could cause an increase in the obstruction of the cerebrospinal
fluid.
Since she isn't verbal yet, it
is hard to say the extent of her symptoms yet, but I have seen signs that I
believe are related to the ACM. Namely with regard to strange behaviors making
me think her balance is off/ or maybe it's vertigo / or ringing in the ears;
and her being withdrawn/irritable sporadically, which other parents whose
children have ACM have mentioned their children experiencing just from having
frequent headaches, pressure, discomfort, etc. This makes sense as I know when
*I* have a migraine, I am grumpy or at least not my usual cheerful self... (And
because my migraines always start at the base of my skull on one side or the
other, it makes me wonder if I should get an MRI!) So if she
is having daily headaches, which certainly might be happening, it would not be
surprising that she is my least even tempered child. The balance and
vertigo could definitely impact her being a late walker and the way she falls-
which is flat on her head, she walks quite well for a child who has been
walking fulltime for less than a month, but when she falls, she falls flat
without any attempt at catching herself on her hands or knees... she tilts her
head in strange ways and has for many months- it looks a bit freaky- she sticks
her fingers in her ears, my mother kept saying "she must have an ear
infection" but she never did... Anyway, it would not surprise me at all if
these strange behaviors end up being due to the ACM.
I 1000% adore her, but even I
have to acknowledge, she is not like the other two. She is so precious to me
that my love for her takes my breath away, when I dream (nightmare) that she
doesn't live a long and healthy life.
Anyway, the growth hormone
replacement is on hold for now until we meet with the neurosurgeon, possibly
have another MRI, and see if it his opinion that starting the rGH is too risky without brain surgery. I have contacted
the school district about their early childhood intervention testing to see if
she is actually behind in speech or gross motor skills yet, or just way behind
where my other kids were but within normal limits. It just strikes me as odd
that I would have a child at the low end of the normal verbal scale...
Let me know when would be good
for lunch- I am available after next Tuesday. I would love to get together and
catch up on what's been going on with you.
Delilah
Tressie,
Thank you so much for your reply. Can you tell me about your daughter's symptoms before and after decompression surgery? How did you happen to learn that she has ACM? Does she have any other medical issues besides the Chiari?
I am a little concerned about
the experience you had with the doctors in
So trampolines are no good for
Chiari kids, huh? What other limitations should I be
aware of??? It's hard to find good information about such things... even now, I
haven’t found that much online about Chiari. Not
enough to satisfy all my questions.
I come to
Delilah
Hi, David,
Hope you have a wonderful and
restorative vacation. I will see you when you get back, I will be at FUMC in
the morning on the 5 September. I signed up for Companions in Christ on Sunday
afternoons while Vanessa is in choir. I signed up for Disciple II at TSUMC on
Monday nights. The decision of what to sign up for, when and where, was easy in
the end, since I lead Bible study for my group of women on Tuesday nights, so
Disciple II wasn't offered at a time I could take it with FUMC, and the only
thing I haven't taken before that was offered during Vanessa's choir time was
Companions in Christ.
Interesting that you say that…
because I am not always so sanguine about God's working in my life, and
I can't always feel the presence of God with me in trials- sometimes I feel
like I am crying out to Him and getting voicemail. But that isn't the worst of
times. The worst of times is when I DO sense His presence in times of trial,
but I stop having confidence in His intentions towards me. That is the hardest
of times. I am doing well for now at trusting Him- but we will see how I do
when I meet with the neurosurgeon, and how I do if and when Virginia requires
the brain surgery much less if it doesn't go well.
Actually, on some level, I
think she probably will require the surgery- at least that is what I am trying
to prepare myself for. But I do hope that I will be able to hold onto this
trust in God's intentions toward me during that time. When I stop trusting and
start pulling back, I am afraid to pray with trust, I do not want to say
"Thy will be done" because I am afraid I won't like His will- and
then I am the one withdrawing from God just when I need Him the most. It's very
easy to see that I do that, right now, when I am not in the gale force of the storm.
I see the storm clouds gathering, and I pray that I don't jump overboard in a
panic when I should be clinging to the boat, because I know I have done so
before. Or, to mix metaphors, I pray that I have the faith to focus my eyes
firmly on Jesus and step right out of the boat without looking right or left at
the storm or the waves.
Back to work- I will see you
soon, and hope that you and Harriet and Luke have a great time at the beach!
Delilah
…We will be meeting with the neurosurgeon at Children's
(David Sacco- anyone know anything about him, good or
bad?) on 27 September. In the meantime, I have
of course looked for as much information as possible about ACM. Since
I thought it was maybe just
her personality, was down on myself for comparing her to the other kids
(especially since regardless of any of this, I just adore her beyond all reason
and think she is wonderful and precious and perfect), but the more I read about
ACM, the more I think to myself... hmmm, how do *I* feel when I have a
headache? I go on about my business, but I am NOT as cheerful or happy or
outgoing and friendly, and I AM more easily irritated and frustrated when I
have that pain going on in the background... so what if she DOES have that
constant pain as just a part of her life?" Not to mention that her sleep
is so disrupted- surely she is generally tired.
Anyway, until she can talk, I
guess it is going to be hard to know for sure. But it seems likely to me that
she does have vertigo/balance issues and ringing in the ears and headaches, and
who knows what might cause her to be such a late walker (no steps at ALL until
15.5 months old but not walking as primary transportation until 16.5 months)
and talker compared to the other kids, but seems possible that it could be ACM
related. It's hard to wait so many weeks for this appointment to know for sure
what we are looking at.
I look forward to getting to
know and learn from you all, and I would welcome any feedback, either on Dr. Sacco or on
Delilah Ray
Dear Ginger,
Sorry you've been ill... there
have been several who didn't receive my email update
at all, which is why I wanted to make sure you'd gotten it. To answer your
question, the prognosis for Chiari is very varied,
the symptoms are very varied too, the severity, the treatment, etc. all varies.
It's so rare that there isn't one particular path any of it follows. Usually
there doesn't seem to be a connection between the GHD and the ACM, but there
are quite a few people who have both- or who have both in their families... one
child with one, one with another... weird. So maybe there IS a connection but
it just hasn't been "put together" yet. I read a couple of really
interesting things about it today, I just forwarded you those.
Love,
Delilah
Many of you have been following
Whether or not she is delayed
based on the "wide range of normal", she is certainly far behind
where my other kids were in speech development and gross motor abilities. Of
course, they were way above average verbally, especially Vanessa, so it may not
be indicative of delays that she's not doing what Vanessa was doing at this
age... I need to go review records to see about Isaac, dig through my calendars
for 2001 and see what all he was doing at what point. It will be good to have
in hand all the information available about how the ACM is affecting her
currently, when we go to the neurosurgeon to weigh decisions about the best
course of action for her. We will certainly be bathing that decision making in
prayer and ask you to join us with that.
In other news, Vanessa and
Isaac are off to a great start at school this year. I attended a beautiful
homebirth last weekend for a friend of mine whose childbirth class I had
taught- it was 12 hours of joy as I supported her through to her goal. Quinten Barrett was born at home, 7 lbs 10 oz born at
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