K,
Just got the EOB for the brain MRI... ouch! It was $4000, but after provider discounts and insurance, we will only owe $335. It's $335 we didn't have, but it could be worse!!! Whew!
Love,
D
Dear Becky,
You crack me up. Nope, did not win the lottery, wasted
$2! But I did pay the bills- what I could of them- and prayed for God to create
in me a clean heart with regard to the balances, and to teach me what I needed
to know with regard to the money we have available and managing it, and asked
to be protected from the sins of covetousness and greed and ingratitude and to
become like Paul- able to be content in no matter what my circumstances, with
plenty or nothing. Now I am focused on trying to LET GO of the lie that if I am
not financially stable, I am worthless and have nothing to offer. Something
about not being "where I feel we should be" in the worldly/secular
ways, to not appear "wise and responsible" in the eyes of the world,
makes me feel like a worm with nothing to offer anyone. This is a lie I must
let go of… and then be patient with God's timing on teaching me how to
be and who to be. Boy, am I glad God's not finished with me yet, because
I am a mess right now!
Love,
Delilah
Dear friends,
I am just weeping a lot this morning. It's only
I love it when I give her a
bite of food off my plate and she says "MmmmmMMMm!" and when I hear
her distinctive distress call that means she is stuck, having climbed up on
something that can't get back down off of.
I love her crazy haystack hair
right down to her teeny tiny size 3 feet.
I love the way she gets
determined to do something (like climb on her hands and knees up two flights of
stairs while holding a lunchbox that is about 60% as big as she is) and doesn't
quit until she has done it, and I love the way she gives up on being awake just
as whole-heartedly, climbing up in my lap and flinging herself sideways while
putting her thumb in her mouth and her other hand down my shirt and laying her
head against my breast.
I love the way she says
"Mama" and "Eye-Yick!" (Isaac- but really means
"sibling" since she calls
I love the way she cuddles
stuffed animals and Barbies and real babies and every animal that will let her-
lots of kisses and patting and hugging... "Pet sweetly, gentle like a
kitty, Ginia!"
I love the way she can figure
out how to turn any telephone ring sound on and how she figured out how to
operate the "motion control" as Isaac says, to turn her sister and
brother's TV show off to get a rise out of them, with the most mischievous,
naughty grin you've ever seen out of someone so tiny.
I love to see my teeny little
toddler diligently carrying her used diaper from the changing table, down the
hall, into the kitchen and opening doors until she finds the kitchen trash door
to throw it away all by herself.
I love to see her awe over
bubbles and splashing water and I even love to see her fury and indignation as
she knocks (pounds) on the closed door to her sister or brother's room when one
of them attempts to exclude her from their play.
I love her so much!
She has been having bad nights
for the last five nights in a row. She has so much pain. She whimpers and
throws herself side to side in the bed. Sometimes a single scream, other times
only moaning/whimpering, as she seems to try and escape her own skin without
waking up. She isn't really awake- just hurting. If I get her off her back and
place her on her tummy on my torso, it eases her for a few moments... but
sometimes she just flails and arches her back and I'm afraid she is going to
throw herself out of my arms onto the floor if I accidentally doze off, and she
cries until I can find a position that doesn't hurt her. Sometimes being face
to face with me on my pillow while I rub her back, or nursing her with us
facing each other on our sides helps. Sometimes nothing much works for very
long.
After she's been asleep about
4 hours, it's most of the night off and on, Kurt and I aren't sleeping much...
we're not mad at her, it is just excruciating because you know she hurts. It's
hard to hear. And we're tired. She isn't tired because she is asleep through
all this, although obviously she isn't resting like she could be. This morning,
when Kurt and I got up after 5-6 hours of this, I just cried and cried. Kurt
never likes to cross a bridge (medically speaking) until he gets to it, and
usually I am the opposite, liking to investigate all the possibilities so that
no matter what the outcome is, I will not be broadsided without any idea of
what was coming. But today, Kurt said "How much longer until her doctor's
appointment?!" We don’t want to go on like this.
I hate thinking that surgery
is the only treatment for this and I am terrified of losing her to death- I
dream of it once every other night or more- I am desperate to protect my
precious baby from pain and the idea that the surgery might or might not heal
her, the idea of her going under general anesthesia and them cutting her open,
my poor baby! I just want to scoop her up and cradle her close and make all of
this not be true. When I look at her and she is behaving just as normally as
can be, it is easy to think it is all a mistake and surely it can't really be
happening to my darling Vi. I pray for her and I KNOW I have to release her to
God and let His will for her be okay with me, whether that is complete healing
(please, Lord!), or surgery, or pain management, or even a short life on earth.
I know that God loves and cherishes
She woke up her usual sweet
self and is having fun throwing all of Vanessa's CD's on the floor while making
"vroom vroom" noises and squealing at Isaac when he tries to prevent
her doing so. I have to get on with my day. But I needed to share my heart
today to be able to let it go and function, knowing that I had sisters in
Christ praying for us today.
OK, one more crying spell and I am done for today.
Love,
Delilah
Later on
Erica,
Thank you so much for your reply sharing your daughter’s experiences
living with Chiari. It was a little overwhelming to me- but yet encouraging
too.
And you have it too? Ugh! I
really want to go get an MRI and see if I have it. I have had bad headaches for
years. Now I have this annoying rushing/pounding/thrumming off and on, it
drives me crazy... and I wonder if I have it. I wonder if I want to know that I
have it, if I do- but I don’t know if I really do want to know. Is it hard to
get insurance because of a preexisting condition? That's part of why I don't
want to know. That, and just feeling like it would be too much to process right
now. It would be great to relieve my mind that I DON’T have it, if I don’t- but
if I were to find out that I do… egads!
I'm thinking of seeing if my
acupuncturist could help
Overwhelmed today,
Delilah
Thank you, friends, for all your prayers yesterday. I
cried off and on for about eight hours and I think I just needed to do bathe my
prayers in tears. I really haven't cried since getting any of
However, I began feeling
better in the afternoon and evening. In the afternoon, I received a response
from the main pediatric neurosurgeon specializing in Chiari, one who I have
heard other parents whose children have Chiari recommend- a personal response
from him in less than 24 hours from when I sent the email! (I like responsive
doctors.) And, after a trip to Dr. Ham's office, we confirmed that
Now, she's still nowhere near
the growth chart curves, and still over 2 lbs away from even being able to go
forward facing in the car seat, but this is FABULOUS progress, and I hope it
indicates that once she can get on the growth hormone, she should have no
trouble catching up to her genetically determined growth potential! Dawn laughed
at me when I suggested maybe it had jumpstarted her and she could just carry on
like this now, and said the growth she has had is probably all the "bang
for our buck" we'll get out of the growth hormone stimulation test, but it
was a great bang and we'll take it gladly! Makes me much less concerned about
the delay in getting started on the rGH, if she can grow that much in a month!
Then Julie came and watched
our children so Kurt and I could go to the movies, and I cried and cried during
the previews, and then was able to just relax and have fun with Kurt. The kids
did great with Julie, and were all three asleep wen I got home. Then Virginia
had MUCH better of a night- although she still woke up and whimpered several
times, she never shrieked in sudden pain or stayed whimpering for long times-
it was the best night we've had in a week, back to “normal”.
Everything looks brighter
today. Thank you all!
Love,
Delilah
Dear Maria-Elena,
I too have a third grade daughter- Vanessa… (and also a 4
year old son- Isaac, along with my
I will be very interested to
hear what Dr. Frim recommends in comparison to the other doctor’s
recommendations. I wonder if "wait-and-see" is going to be okay in
Thank you again for all your
information.
Delilah
Good morning, Michele!
I have (another) headache and
my mouth is killing me because I bit a huge puncture wound in my tongue, but
otherwise, I'm good today. At least
Our neurosurgeon appointment
is the 27th. We have our first visit with the school district evaluator people
tomorrow, it is an hour visit, and then there will be a two-hour visit where
they do the actual evaluation and let us know what we need to do, if anything.
On days like today, when Virginia has been happy and hasn't fallen at all and
hasn't hit or rested her head a million times and seems as normal as can be, I
think "I must be a crazed hypochondriac mother, there is nothing wrong,
what is my problem?!?" and it is hard to remember how vividly I was sick
with worry about her last week. Sigh. It's so hard to know what's best to do
for our kids, isn't it? (I read your post about Monica, but I didn't know what
to suggest- I've had experiences like that with Vanessa and didn't know what to
do then either! LOL)
Anyway, I haven't taught a CBE
class since July, though I did attend a birth last month and I have another mom
due anytime- sometime this month, more likely next week- who I am doula for.
And, I am meeting with a doctor, the head L&D nurse, and the head nurse of
the women's department, of a local hospital on Thursday along with two other
doulas to see if they would like to work out some sort of arrangement for their
clients who need/want to have a doula. Making connections is good, even if it
brings in no money. I don't think the September birth class will make, but I
have two signed up for the October class already (and they have both said if I
need to teach them in November instead, that is okay). I have to commit it to
God and let Him work it out- He knows what I do not, about what my schedule is
going to be like. But yes- I still LOVE attending births and teaching CBE. LOVE
it.
Big picture: our financial
situation still sucks, but my husband is employed and I have a wonderful life
in general, one that I cherish, so I am trying to not freak out about it or
even think about it, if I can avoid it. Which since I need to enter all our
expenses into Crown today, is going to be a feat! LOL
Hope your day is good!
D
Thank you so much for all your information, Cathy. I feel better having obtained Dr. Frim's agreement to do our second opinion.
What I am most concerned about
is
BUT... in one case, it nearly
cost my son his life. Because he has always been very healthy, the first time
he manifested symptoms of ketotic fasting hypoglycemia, I didn't
"recognize" that something was terribly wrong with him until he
literally lost consciousness. I kept trying to "wake him up" and let
him "come out of it" without knowing that his blood sugar was 14 and
his body temp was down to 93 something by the time I finally got a clue and
rushed him to the ER.
So I don't want to make a
mistake like that with
My daughter is seeing the neurosurgeon here in Dallas (Dr.
Sacco) on the 27th, and I have already contacted (email) Dr. Frim about doing a
second opinion once we have seen the guy here. I would really just like to get
whatever news from two different neurosurgeons, and hopefully it will match up.
Talking to other parents of kids with Chiari and people who have it, makes me
nervous- because so many of them start out with "the doctor said I was
asymptomatic until..." or "the first surgery done by our local
neurosurgeon was bad..." etc. YIKES! I want the right answer from the
get-go, not to wait until we screw things up for
Anyway, I need to be able to
trust the doctors I am seeing for her, to help me ascertain what is going on with
her, so I can advocate for her, since she can't communicate verbally with me
yet. I feel reassured by the things I have heard about Dr. Frim, and how very
many people have responded. Thank you.
Delilah
Dear Tracy,
If you picked up on me being a
little weird on the phone, it was just because Friday was such a hard day- it
was the day I had been crying off and on all day about Virginia and I was in a
weird place because I did want to talk to you and was glad you called and yet,
didn't feel like talking to anyone and wanted to isolate myself and just lick
my wounds, all at once, if that makes sense. But I'm still glad we talked...
As you do the archive diving,
if you happen to run across any posts from around 3 years ago, when Isaac was
1.5, and I mention him talking or words he says or anything, could you possibly
flag those posts for me? I wanted to share that kind of information with
I hope the AS diagnosis is just
what
Anyway, I should not complain,
at least
Delilah
K,
Love,
Delilah the big fat whiner
By the way, do NOT call Isaac's class preschool or he
will correct you- preschool is where he went when he was LITTLE, now he is in
PRE-K! (and don't you forget it!)
Isaac: Look, Mom, they have sprinklers on...
Mom: Yep, they do.
Isaac: I think their babies are all still in their
tummies except for their very big girl who is at school.
Mom: Huh?
Isaac: That family, they don't have any kids, just a big
girl at school and a baby in the mommy's tummy. Or maybe they just have a brand
new baby.
Mom: (bewildered) How do you know what kids they have or
don't have at that house? Have you met them?
Isaac: No, because there was no one playing in the
sprinkler, so the big kid must have turned it on, but then she had to go to
school, and the baby isn't big enough to play yet.
Mom: Oh. That may be. Do you think maybe their grass
could be thirsty and that's why they turned the sprinkler on?
Isaac: Hmmm. I don't know, Mom, but great idea. Maybe so!
Delilah <- who rarely waters the grass without an
"ulterior motive" involving her children getting wet
P.S. OMG!
Later that day
K,
The ECI lady (early childhood intervention) just left- we are scheduled for our evaluation next Tuesday. They will come 11-1 and hopefully we will be all set. Gin just puked again, but is now wandering around acting happy and fine... she obligingly puked out of the blue, laid her head down, flipped her head upside down, etc. for the evaluator from the school district so I guess that's kind of a good thing...!? Gack! Anyway, back to more laundry.
Love,
D
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