Becca’s history

These are all of Rebecca’s old Caringbridge updates. In reverse Chronological order

Rebecca Kaylene Kennedy’s
Journal

Tuesday, May 3, 2011 11:10 AM, EDT

Things went well at Rebecca’s neuro. We’ve upped her VNS, so both the
output current and the duty cycle are increased. I know that is Greek to
most readers – but to those in the Epi/VNS family you’ll understand.
Basically the shock is stronger and the on/off cycle is faster. We’ve also
gone back up on the Lamictal. The hope was that we could wean her off of
some meds to let the diet do more of the work on its own. After the first
wean it wasn’t so bad. But the 2nd knock down of dose things got bad.
So we are increasing back up. She is going back up to 50mg, 25mg, and
50mg. (we were at 25mg, 25mg and 50mg – originally 50mg 3 times a
day). If we have to we’ll go back to the original dose.
This whole seizure disorder is so scary. Knowing that a year ago she
wasn’t having full blown tonic clonic seiuzres and now they are pretty much
a daily thing. That now we’ve seen her lips turn blue a couple times. I got
her neuro to write a prescription for us to get her a pulse oximeter. This
isn’t something every child with Epilepsy needs, but it is something I
strongly feel Rebecca needs. LGS is serious (I’ve been in denial of that
one for a long time). But her recent changes in things have proven I need
to know if there is a change in her vital signs that warrant us calling 911
(oh my – even the thought of that makes me sick to my stomach).
Please pray these changes to Rebecca’s meds and her VNS help stop these
recent changes in her seizures.

Friday, April 29, 2011 3:04 PM, EDT

Please Pray
I went in to get Rebecca ready for school this morning, got her clothes out
and opened up her bed. I got ahold of her and didn’t notice anything
unusual. As soon as I got her out of her bed she went into full seizure. I
laid her back on her bed and grabbed the VNS magnet we have stuck to
one of the hinges of her bed. Multiple swipes of the VNS did not stop this
monster. Her lips were turning that scary blue color every parent of a child
with epilepsy fears. After a few moments her lips returned a soft pink
color, but the seizures continued, appearing to stop and start. In reality I
know she was in constant seizure. Even though she wasn’t in a clonus the
entire time, you could tell she wasn’t “with it” and was still in seizure land.
I locked the door on her bed and went downstairs, calmly but quickly.
Daddy was getting his lunch ready for work. I told him I needed the
Diastat, and why (it was in the drawer right under the cabinet area he was
standing at). Of course it wasn’t the news he wanted to start his day with
either.
I went back upstairs and gave Becca the diastat – she was still seizing, but
the fatigue of the event was taking a toll on her. Shortly after I gave her
the diastat she passed out. I watched her drift off into a diastat post ictal
sleep.
Around 9:30 I called her Neuro. Thankfully not only did I get right through
to the Secretary – which never seems to happen on the days I need it, but
after telling her what was going on she put me through to the nurse, who
also answered her phone right away. Uhh yeah – God was really looking
out for us on that one. That was the FIRST TIME EVER. Told her what
happed, and a brief snyopsis of last weeks events. She agreeed Dr.Mikati
would probably want to see us in clinic, but she’d talk to him and call us
back soon. Within 20 minutes (I kid you not) she was calling back telling
us we had an appointment for Monday AM. Later in the day she called to
let us know Dr. Mikati wanted us to increase her clonazepam through the
weekend (and extra pill at her 9pm dose) as well if we had more problems
to take her to the ER.
Please pray for Becca. This was our first MAJOR seizure event. We’ve
been dealing with epilepsy her whole life and have never had a full tonicclonic
lasting over 5 minutes. Sure clusters of seizures lasting longer than
5 minutes, and back to back to back clusters. But the world of Tonic-clonic
is still new to us. And its SCARY. Its horrible. It sucks.
However we do have good news — not seizure related.
Becca’s Physical Therapist feels that Becca has come far enough with PT
that we should consider ending PT services. Sure Becca isn’t typical in that
area – but she never will be. Too many x factors. But she does awesome.
She has come so far. So now we might instead add an extra Occupaitonal
Therapy (fine motor stuff) or Speech Therapy session each week. Its kind
of a hard decision to make. Life skills wise I feel like pushing OT might
help her more. push come to shove she could use some kind of alternative
communication. And she isn’t regularly trying to talk, not in the way a
speech therapist could utilize in a session. So more work on those hands,
and using them appropriately from my momma perspective is a higher
priority. But I want input from her teachers and therapists (she has good
specialists in her life).
We’re also seeing some really good skills and hand use lately. Becca
grabbed the lace when playing with lacing bead, with her little pincher
grasp and pulled. That was one proud momma moment for me. I was
almost in tears.

Tuesday, April 26, 2011 11:13 AM, EDT

What a wonderful Easter
Becca had such a wonderful Easter. David, Becca and I
went up to Pop Pop and Grandma’s place up at Lake
Gaston. Granted the boat wasn’t ready for summer, and
the water was to cold for swimming, so no fun water
play – but it was still a great weekend. Becca enjoyed
her time up there. My Brother Rick, his wife Amber Lori, and their dog
Chance came up Saturday night.
She has a favorite “toy” up there. Its a little electronic button (kinda like
the special needs Augmentive Communication “big mac”) and when you
push the button it plays part of the lyrics from Kiss”Rock and Roll all night”
(“I wanna rock and roll all night, and party every day”). She LOVES this
thing. She carries it around the house with her, playing the song over and
over. Its so cute!
Now any time we go up there, she checks out the house for a bit – I guess
to figure out where she is and then goes right for that button.
This time she found another new love. Sitting in the grass in my dad’s
backyard. Anyone who knows my dad would know he LOVES his yard, and
loves to take care of it. That yard could seriously be a commercial for
grass or something. It honestly felt like a lush carpet under your feet.
Becca loved sitting in the grass. She was good too, she didn’t try to eat
any of it. Maybe we can finally spend more time sitting outside at home.
This has previously been why we never did before – she just would try to
eat the grass.
The evil seizure monster has not been kind to her lately. Yet, by and
large, she isn’t letting it stop her. No – I honestly don’t know what to do.
Keep Becca and all of our seizure friends in your prayers.

Saturday, April 2, 2011 12:20 PM, EDT

It hasn’t been the best of weeks for Becca. Today was our 2nd day this
week giving Diastat. I’ve also already had to give extra Clonazepam a
couple times, trying to break this darn cycle.
Thankfully after the diastat this AM she is playing like normal (if you can
call micheif and breaking things normal).
Two more days of school and then intercession. when she goes back it will
be the final weeks until Kindergarten year is over.
We’re adding MCT oil to part of her Ketogenic Diet. This should help
increase her ketones and help her with seizure control. We’ve also had to
start her on Potassium Citrate – Citric Acid – basically big fancy name for
stuff to help her not get kidney stones. This is because of the diet,
coupled with the topamax she takes. both increase the risk of kidney
stones. the two together is obviously kinda risky.
No new major developmental stuff. We’re experimenting with using Theratogs
to help her. They are a wearable therapy system. Its a system of a
vest and shorts, with various straps. It provides compression and can also
help gently pull various muscles into the right direction. This should help
provide some calming for Becca and also help provide some better
muscluar-skeletal alignment.

Thursday, February 24, 2011 9:48 AM, EST

Not to much has changed.
The diet is still helping. Ironically enough because she is at a fairly decent
place her doctor is decreasing her lamictal. Praise God our first drop of the
medicaiton went smooth as could be. We have another drop coming up in
a couple weeks. This is a SLOW wean.
Another plus is that the couple times I’ve goofed and forgotten to give her
meds – like this past Monday morning – it did not make her seizures go
crazy. There was a mild increase – but nothing like we used to see. An
average day is showing us around 2 events a day. There may be other
really mild ones we don’t notice – but they are THAT mild. Even then she
usually has her one typical event in the AM, an then maybe a cluster of
head drops later.
This doesn’t mean she isn’t having something like absence seizures, or
other ones we just don’t see. But honestly – if her seizure is mild enough
to not affect her at all, we can live with those.
Her speech therapist and I have decided to get Rebecca a communication
device. It will likely be the Quick Talker. We’ve tried using the Picture
symbols in various places, but for Rebeca to know to get one, and carry it
TO someone is just too much for her. We need that auditory help so she
can have a better way to let us know what she wants.
Had a fabulous time last weekend going to a support group meeting for
families with kids with Lennox-Gastaut. We met in Winston Salem. It was
fabulous to see some old friends again, and meet a new one. Granted
most of us already keep up with one another on Facebook, but it is
wonderful to see each other in person. knowing you are in a room with
other families with kids just like yours. That your kid’s strange behaviors,
or cogntive deficit is no different than the others. You get to feel normal!
Becca continues to have health ups and downs too. Catching a stomach
bug (which she shared with David and I) and then strep throat. Poor little
bug!

Tuesday, January 18, 2011 3:03 PM, EST

Things remain pretty status quo for us. The ups and the downs – still
having them all. Becca is having good days and bad days. Her seizures
continue to baffle us. Some days it seems like the diet is really helping –
other days not at all. And it isn’t like Becca can get into forbidden foods
on her own (or even that her ketones reflect any kind of change that would
explain the changes in her seizure activity).
Right about the time the Winter intercession was supposed to end we got
an ice storm here that caused school to be cancelled a few more days (one
of the days was an early release in anticipation of the event). The day
the event was supposed to start we kept her home, in part because of
being 30 minutes away from the school, and in part because she had a
significant seizure that morning. The next two days were snow days.
Finally last week she went to school TWO days. Don’t you know in those
two days she must have caught something. Sure enough this past Monday
(a holiday for Martin Luther King Jr day) she started in with a cold and
fever. No school today.
Oddly enough – by the grace of God – her seizure activity has decreased.
Developmentally she also continues to do really well. Lots of babbling and
attempts at speech. She has used crayon to make mark on paper.
We’ve also gotten her to correctly choose color (as in “show me the red
one” when presented with two colors) Now granted – she’ll quickly tired of
games such as this. The first time we saw her doing this it was too funny,
her Speech therapist had the picture card showing the green square. I was
holding the green square and another shape. The therapist asked Rebecca
to show us the green Square. Rebecca kept grabbing the card the therapist
had – and NOT the one I had in my hand. Finally the therapist and I were
laughing too hard, “yes Rebecca that is a Green Square” (smarty pants!).
She hid her card, asked her again and Becca took the one from my hand.
Each time we asked her a question for color/shape we had to hide the card
after asking her, or else Rebecca would try to show us the card instead of
the object. But she got 5 out of 5 correct! For those curious we were
using shape sorter blocks.
We’re working on teaching Rebecca to use the GoTalk 9 – an Augmentive
Communication Device, so she can select a picture communication symbol
to represent what she wants to say. Myself (or someone else) will have
recorded something to go along with that symbol. So – for instance she
can press a picture for a cup and it will say “I want a drink”.
We meet with the Neuro on Thursday, as well as the Ketogenic Dietitian.
We may look at adding a new drug.
Please keep us in your prayers that things would stabilize. As many of you
know the weeks around Christmas and New Years were rough around here.
This cold is just more frustration we don’t need (including the health
issues both David and I have).

Sunday, December 26, 2010 6:50 AM, EST

The presents are unwrapped, the food is gone (except bountiful yummy
leftovers!) and we are now in Christmas hangover.
Except for a bump in our road Christmas morning – Becca had an AWESOME
Christmas. we gave her Diastat Christmas morning, Daddy and I were not
going to things get bad and let her be miserable. 3 events within an hour
of her being awake and we knew she had enough. After her diastat nap
she had a GREAT day. We went off to my dad’s house and had fun!
However – I should say that was day TWO! On Friday we spent the day
with her Grandparents in the High Point area (Daddy’s family). Becca had a
blast opening presents. She would rip open gifts even if they were not
hers (little stinker!). Every now and then both days she had her eyes set
on a certain gift and just HAD to get that one open. Friday at Grandpa’s
house it was a gift bag for me. Saturday there were a few presents she
was bound and determined to get open. It was too cute!
Of course both days towards the end of the day she was just done with
things. She’d want nothing to do with trying to unwrap things, or all all
the commotion. She was ready to just go do her own thing again.
I’ll upload pictures to our Kodak Gallery later (and probably a few here and
Facebook).
Merry Christmas Everyone – I hope you had a blessed day.

Friday, December 10, 2010 6:10 PM, EST

Rebecca is bouncing back after her surgery. We had
follow up with Neurosurgery yesterday. Dr. Grant was
running really late. I’ve learned not to grumble too
much – as long as I’m kept up to date (and I know we
are not forgotten). One of the nurses we love had told
us he was running behind. Thats fine – it happens.
Emergencies come up.
We mentioned to Dr. Grant Becca was doing well but still having a lot of
seizures – upwards of 10 or 12 a day (the count was over 12 that day). I
mentioned how previously we’d done an extra clonazepam dose for a
couple days to break these kinds of cycles. I’m guessing she is just in a
bad cycle now. He mentioned that Dr. Mikati is in NF clinic today and we
could ask him. So he goes out and asks him. I hear them talking and of
course Dr. Mikati wants to see Becca (in a good way – not must see before
approving meds way). So Dr. Mikati adjusts her VNS so that the time that
it is “off” is shorter. We also decide that I’ll give the extra clonazepam
through the weekend.
Gave extra dose at dinner last night and today has already been a better
day. That stuff works quick. Its always been one medication I love. We
tried to wean her off of it – simply because it is bad to be on for too many
years (highly addictive) – and her seizures got way worse. So we know it is
helping.
Also – as an aside I’ve discovered the “Ultra pasteurized Heavy Cream”
has ingredients other than cream (milk)! It has mono and di-glycerides
and POLYSORBATE 80, carrageenan –
those add up to additives which could be triggering more seizures!
DOH!
So now I’m trekking over to whole foods to shell out the $$$$ for Heavy
Cream that isn’t “Ultra” Pasteurized.
Don’t know why some cream is Ultra Pasteurized and some is
simply Pasteurized.
But I’m going to eliminate these yucky additives and hope it cuts out these
residual seizures she would be having (presuming she isn’t in her bad cycle
or in shunt failure).
On a funny note – Becca is turning into a climber. She likes to climb over
the arm of her recliner. Tonight she tried to climb up the arm of the sofa.
If it wasn’t a cold winter I’d take this kid to the playground. I think she
would suddenly love the place.
** updated to add a picture of Becca and Santa at our local Family Support
Network ‘Cookies and Cocoa with Santa’ Event
Becca had a Blast. She did some Crafts, played some games and had her
picture taken with Santa.

Monday, November 29, 2010 2:40 PM, EST

Surgery is over and we are in a room.
Doctor replaced the valve and the tubing in her head.
Becca is doing well and playing in her bed.

Saturday, November 27, 2010 8:24 AM, EST

We have to be at Duke at 7:30 on Monday for Rebecca’s shunt surgery.
Hopefully this will fix all of the issues she has had lately – the bad
seizures, the increased sleepiness, the stumble in her gait.
She enjoyed visiting family over thanksgiving, and her special Thanksgiving
Ketogenic Meals.
BTW – if anyone hasn’t read this article from the NY Times it is a GREAT
read

All about the diet Becca is on.
On another note – we are finally getting Rebecca’s new special needs
stroller.
http://www.convaid.com/cruiser-wheelchair-hcpcs-e1236-p-69-l-en.html
It will be nice for her, since her long legs are just getting too long for a
regular stroller.
It takes forever to get equipment through her Waiver program for her
disabilities. But finally our equipment place has it in for her! We’ll get it
on Thursday.
I hope everyone had a great Thanksgiving.

Wednesday, November 24, 2010 1:18 PM, EST

Many of you know already – but some don’t. Rebecca’s MRI a couple weeks
ago showed that her shunt was not working properly. She went from
appearing quite stable to a dramatic change in her seizure quality and
being more fatigued/lethargic during the day. She is going to bed soon
after dinner.
Neurosurgery has decided that her shunt must be revised. Becca and I
spent a long day at Duke yesterday meeting with the doctor, pre-op and
such to plan things. She will have surgery on Monday.
the reason for the “wait” is of course because it is a holiday weekend and
she isn’t in shunt crisis – just in a slow steady decline.
I’ll find out this afternoon what time her surgery will be.
It involves staying overnight in the hospital. Only one night presuming all
goes well.
Please – pray that this helps her. Pray that the reason she was still having
seizures on the Ketogenic diet was really because her shunt was already
causing pressure and problems. Pray that once she heals that the diet will
WORK 100% for her. I dream of the day my child doesn’t have seizures
every day.
Today has been a BAD seizure day. I’ve lost count. One or two before we
got to OT in the morning, multiple events at OT, more on the ride home,
and more during Speech therapy. I’ve put her in bed for a nice long nap so
she can rest and sleep.
I have made up a recipe for a Thanksgiving meal for Becca that is Keto
friendly. She’ll get to have some Turkey just like the rest of us. A small
amount of green beans AND I’ve got a pumpkin pie type concoction for her.
so her own special Turkey day meal.

Wednesday, November 10, 2010 4:28 PM, EST

Just had to update that we got progress reports from school for Becca and
they brought happy tears to my eyes.
Becca is now signing “more” (although it is a bit of a modified sign) with a
little prompting. I’ve been working on this sign with her for years. She
“gets it” now!
She is attending to books!
She is using the switch (controller) for the computer
Showing clear preference for toys.
Her walking is getting better and more natural.
Not all of this is a direct result of the diet – some of this is just my little
girl growing up. But my little girl is growing up. She is in such a wonderful
program in school and has such awesome teachers and therapists who work
with her.
She is coming right along – slow and steady at her own Becca-speed!

Monday, November 8, 2010 6:15 PM, EST

We have officially been on the diet one month – including the time I’ve
been home doing it on my own. Things are going well. Becca is not
seizure free – but we’ve had some really good days. It can also be noted
that the seizures Becca does have are not as hard on her little body. Even
on a day she had a fairly high amount of seizure events she did not require
naps to sleep off the seizures. Just two months ago, she would have been
sleeping the better part of the day with identical seizure activity. This
time – she didn’t skip a beat! That in and of itself is a blessing.
This allows her more time to watch and learn about the world around her.
Her walking is greatly improved. People who know her are noticing and
commenting to me how much better she is walking. I LOVE this!
We are continuing to tweak things with this diet. That is the reason for
our 3 month commitment. Trying to get things just right of how we are
spreading out Becca’s meals and calories.
We were doing 4 meals a day. However in an attempt to make the last
meal of the day later, so she didn’t go as long overnight, it meant I woke
her up to get her to eat. There was a downside to this – whenever I woke
Becca up it triggered seizures. We’ve known for years that if she was
sleeping off a seizure to not wake her up or it would trigger more seizures.
However, I’m guessing the same thing holds true when she was in that
early restorative sleep stage. Since she would never have been in bed long
– it meant I was disrupting sleep. So we have switched her to 3 meals per
day. If it seems like she is hungry through the day we can change this to
3 meals and a snack. Pretty much any combination. There are some set
#s for her dietary needs (Calories, Fat, Protein, and Carbs).
Its a tad more complicated and its set up for me by her dietitian.
I am so happy with how well she is doing so far. Hoping she continues to
improve!

Tuesday, November 2, 2010 12:01 PM, EDT

November is Epilepsy Awareness Month.
So with that in mind….
Historically, epilepsy has been neglected, feared, and misunderstood. A veil of secrecy
surrounding the disease has resulted in myths, superstitions, and a general lack of knowledge.
This has impeded scientific progress toward finding answers to one of the oldest-known and
most prevalent neurological diseases, leaving treatment and research efforts in the dark ages.
It is estimated that close to 2 of the 3 million Americans with epilepsy do not have complete
seizure control, or only experience seizure control at the cost of debilitating side effects from
medications. The need for a cure is clear.
Many of the patients are children, who can experience up to hundreds of seizures a day. The
impact on the developing brain ranges from learning disabilities to retardation, and in a
disturbingly large number of patients, even death.
There is an increasingly large incidence of new onset epilepsy in the aging population as a
result of strokes, brain tumors, and Alzheimer’s Disease. In addition, for many soldiers
suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.
suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.
What is a Seizure?
In normal brain function, millions of tiny electrical charges pass from nerve cells in the brain to
the rest of the body. A seizure occurs when the normal pattern is interrupted by sudden and
unusually intense bursts of electrical energy which may cause strange sensations, emotions,
behaviors or convulsions, muscle spasms, and loss of consciousness. These unusual bursts
are called seizures.
What is Epilepsy?
When a person has had two or more seizures which have not been provoked by specific
events such as trauma, infection, fever, or chemical change, he or she is considered to have
epilepsy.
What Causes Epilepsy?
Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve
signaling chemicals (neurotransmitters), or a combination of these factors. Causes of epilepsy
may include head injuries, brain tumors, lead poisoning, certain genetic diseases and some
infectious diseases. However, in more than half the patients with epilepsy, the cause is still
unknown.
Historically, epilepsy research has been under-funded. The picture becomes clearer when
federal dollars spent per patient on research are compared with other diseases, many of
which affect fewer people.
FACTS
*Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral
palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of
epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people
worldwide.
*In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
*Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and
many other factors.
*In over thirty percent of patients, seizures cannot be controlled with treatment.
*Uncontrolled seizures may lead to brain damage and death. *Many more have only partial
control of their seizures.
*The severe epilepsy syndromes of childhood can cause developmental delay and brain
damage, leading to a lifetime of dependency and continually accruing costs—both medical and
societal.
*It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus
(prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizurerelated
causes such as drowning and other accidents.
*The mortality rate among people with epilepsy is two to three times higher than the general
population and the risk of sudden death is twenty-four times greater.
*Recurring seizures are also a burden for those living with brain tumors and other disorders
*Recurring seizures are also a burden for those living with brain tumors and other disorders
such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple
sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
*There is a strong association between epilepsy and depression: more than one of every
three persons with epilepsy will also be affected by depression, and people with a history of
depression have a higher risk of developing epilepsy. *Historically, epilepsy research has been
under-funded. Federal dollars spent on research pale in comparison to those spent on other
diseases, many of which affect fewer people than epilepsy.
*For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a longterm
consequence.
FIRST AID
When providing seizure first aid for seizures, these are the key things to remember: (this
list was specifically written for tonic-clonic seizures – formerly known as Grand-Mal. However
they really do apply to any seizure)
Keep calm and reassure other people who may be nearby.
Don’t hold the person down or try to stop his movements.
Time the seizure with your watch.
Clear the area around the person of anything hard or sharp.
Loosen ties or anything around the neck that may make breathing difficult.
Put something flat and soft, like a folded jacket, under the head.
Turn him or her gently onto one side. This will help keep the airway clear.
Do not try to force the mouth open with any hard implement or with fingers. A person
having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can
injure teeth or jaw.
Don’t attempt artificial respiration except in the unlikely event that a person does not
start breathing again after the seizure has stopped.
Stay with the person until the seizure ends naturally.
Be friendly and reassuring as consciousness returns. THIS IS TRUE FOR ANY SEIZURE
TYPE! Especially in children, simply stroking an arm and letting them know it will be okay,
you are there and it will be over soon is a great comfort. It is probably the #1 thing to
do other than timing the event and making sure they are not going to get physically hurt
by nearby objects.
Offer to call a taxi, friend or relative to help the person get home if he seems confused or
unable to get home by himself.
Want to help – kids like Becca, or one of her friends who suffers from multiple daily seizures?
How about this Christmas, or on their Birthday, instead of giving them another toy or more
clothes, donating money to the Epilepsy foundation in their name. Of course you don’t have
to wait for a special occasion – our kids need a cure now!

Sunday, October 17, 2010 10:58 AM, EDT

So far things are going well on the diet. I am seeing a reduction in her
daily amount of seizures – which from all the data I’ve read means that if
we are seeing that now gives GREAT hope that over time, and possibly
with tweaking later, it could work for her.
This morning I went in to get her out of bed had one of those things
parents dread – POOP everywhere. Her diaper had slid off and well
EWWWW. I scooped her up and went straight for the bathroom. Poor
hubby was still in our master bathroom taking a shower – so I had to kill
his water pressure/temp but oh well! But the awesome spectacular news
is …. the child who HATES bath time – esp the emergency dump you in the
tub and hose you down – this did NOT cause seizures. Every other time
we’ve had to do this to her, its caused seizures. I even bathed her without
strapping her into her bath chair and she did fine.
Sure she screamed and hollered about the incident. But no seizure.
Yes – a little later in the morning she had one, but we are still seeing
about 2 a day. And I don’t know that the one 10 minutes later was directly
related to bath trauma.
I am just so happy!
Becca is doing great on the diet. Still some issues with her seeing David
and I eat. I don’t know that she is hungry when begging for food when we
eat. She isn’t begging for food other times of the day. Its just she is used
to eating off our plates. So its an emotional/behavioral thing. For the
past few years I’ve fed her off my plate at mealtime. But as for eating her
new meals she is doing good.
Yeah, they are kinda strange – lots of cream and oil. But I’m trying to keep
them as normal kid friendly as possible.
And I can easily whip the cream and oil – add a few drops of her allowed
sweetener and freeze – Viola – Ice cream! Esp if the meal plan I’m doing
for her includes fruit (as opposed to a Veggie one) – I can mix in the fruit
into the ice cream! Otherwise there are a few allowed extracts or
flavorings I can add.
Her meal a few nights ago was an Egg Soufle’ (Egg, cheese, butter) and
Raspberry ice cream.
Sure her portions would make most people shudder – but they are calorie
balanced for her. But its a creative, simple meal plan she LOVES!
For a meal while visiting the in-laws yesterday, I’d made and took along a
Chocolate Cheesecake. yeah – every ingredient is weighed and calculated
so its a different kind of cheesecake (still basics of cream cheese, heavy
cream, oil, Cocoa). She LOVED it! gobbled it right down.
cream, oil, Cocoa). She LOVED it! gobbled it right down.
I hope my sharing a bit about WHAT she is eating has been informative to
those who know nothing about the diet, or have heard “its gross”, maybe
think its all cream.
Its all about attitude. We are taking the attitude of we know its kind of
weird, but its going to help! We don’t like to ever tell Rebecca her food, or
medicine is gross or icky (no matter how gross I think it is!). So yeah –
eating a spoonful of mayonnaise may not be to my liking, but she doesn’t
seem to mind.
Keep the prayers up.
Lastly I’d love to leave you with the lyrics of a song that means a lot to me
lately. Its from a Christian band called Kutless. The song is called “What
Faith can do”
“Everybody falls sometimes
You gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you’re stronger, stronger than you know
And don’t give up now
The sun will soon be shining
You gotta face the clouds to find the silver lining
I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s too scared to death
When they decide to take that step out on the water
But it’ll be alright
Life is so much more than what your eyes are seeing
You will find your way if you keep believing
You will find your way if you keep believing
Overcome the odds
When you don’t have a chance
(That’s what faith can do)
When the world say you can’t/ It will tell you that it can ”
Its a beautiful song that has given me so much hope and inspiration for
Rebecca’s healing. Our hope doesn’t end. It doesn’t matter what the
statistics are about a cure – Impossible – nope! We will not quit!
I hope all of my friends out there facing the hurt and pain will find their
silver lining soon.

Sunday, October 10, 2010 11:29 AM, EDT

We came home on Thursday! Things are going well.
I’m catching up on my sleep.
Becca is doing well with her meals (and her drinking).
Yesterday I think I saw a grand total of two seizures? Pretty darn good if
you ask me! Now that doesn’t mean another day won’t be worse – but I’ll
take a very good day when I can get one!
I’ve been weighing out a bunch of her meals. The only thing I’m not preweighing
is her cream and oil. Mainly because I’m paranoid about spilling
the little cups in the fridge. (I’d appreciate tips from veteran Keto moms
though).
Becca has lost her two bottom baby teeth! She had her permanent teeth
come in behind the baby teeth. The baby teeth had been loose for quite a
while. While in the hospital Becca was biting on a toy and nearly pulled
out one of them. I had to get a nurse to come in to help me so I could
finish pulling the poor tooth (it was dangling at that point). Becca was
NOT happy. Yesterday I pulled the other tooth since I could see she would
push it all the way forward with her tongue. I was so paranoid it would
come loose and she’d swallow the thing. I can tell now she is so much
more willing to drink from her cups. I think that was part of her problem
those few days in the hospital. Those teeth were SOOOO loose that any
pressure from a cup had feel odd.
Becca has had a blast playing with the mylar balloon that I got her while
Becca has had a blast playing with the mylar balloon that I got her while
she was in the hospital. This kid LOVES balloons. its so cute. She has
carried it around the house with her during the day.

Wednesday, October 6, 2010 4:47 PM, EDT

Diet initiation going well. So far she is tolerating all the meals well. As
mom – and the person who will be responsible for weighing out all her
meals and such I’m finding it isn’t soo hard. A tad time consuming as I get
used to it – but I’m also still in the OCD stage. Give me a few months and
it will all be 2nd nature (it won’t take me 10 minutes to get the darn piece
of fruit trimmed down the the exact gram amount).
Our only issue is drinking. for those who have followed Becca for a long
time – and have followed us through previous visits to the hospital this
comes as no surprise. This kid just gets MAD about being in the hospital.
The way she exerts her will is to refuse to drink (which oddly enough she
loves her sippy cups!). So sometime they will start giving her IV fluids at a
really low rate to keep her from getting to dry. Hopefully this will perk her
up enough to want to drink more.
Still way to soon to even predict if the diet is going to help with seizures.
Stress is Becca’s big trigger – and she is stressed to the max right now.
Please pray she drinks! If she drinks we might – just might get to go home
tomorrow!
And prayers for all of my other seizure kid friends too! Several of them are
also starting on this Ketogenic diet journey around this time as well. And
other friends who are quite simply at a cross-roads. Lennox-Gastaut by its
nature is resistant to medication. and of course doctors simply don’t know
that much about how the brain works or treating seizures. So many of my
friends I’ve made on this journey reach the point where the medical team
starts to shrug their shoulders. It is heartbreaking for parents – and the
rest of the family. Please – keep my friend Denae and her daughter
Heather Riley in your prayers. Denae needs guidance.
Becca, Heather, Emma, Oliver, Cole, and many many many others need
your prayers for God’s ultimate healing. I have total faith that He can and
will heal my child (the patience part is hard though). I don’t expect you to
remember names but just as you say a little prayer for Becca later – please
pray for other children with intractable epilepsy.

Friday, September 17, 2010 1:34 PM, EDT

So we’ve made it through our first quarter of school (okay technically I
don’t pick her up for another hour and a half – don’t get too technical on
me!)
Rebecca is doing so awesome in Kindergarten. She loves everyone over
there and is really meshing well with the staff. She is tolerating hand over
hand so much more these days.
I think only once have I had to go back to school to pick her up because of
seizure activity. Her teachers are so great about managing things. They
really are comfortable with her events, and unless its really out of control
they haven’t called. Usually if she is having a bit of a hard time, or worn
out from seizures they just pull out one of the mats in the room and let
her rest for a bit – which is all I’d do at home, let her sleep. So she gets a
short nap at school and is ready to play with her friends again. And Mommy
doesn’t have a heart attack when the phone rings and she sees “Easley” on
the caller ID.
Onto heath news.
We’ve battled our first cold of the season. Lets hope we keep them to a
minimum this year!
Dr. Mikati is adjusting her VNS more. He has tweaked it twice in recent
weeks. It is helping.
but
the
BIG Gigantic happy news is……………..
Rebecca is starting the Ketogenic Diet to control her seizures even further.
This is going to be a MAJOR undertaking for me – and a major change for
her – but it will be worth it – just for the chance at fewer seizures (or dare I
even dream….. no more seizures?)
If you know nothing of the diet – check out
http://www.charliefoundation.org
Thats probably the easiest way to learn.
the nitty gritty – its a High fat, adequate protein, low carb diet.
Her meal plans are carefully calculated for her by a dietitian trained in this
Her meal plans are carefully calculated for her by a dietitian trained in this
diet.
Because its high fat – the calorie count is strictly monitored so she won’t
gain or loose weight.
We have to monitor EVERYTHING. Did you know products like hand soap
have hidden carbs in them!
Yes this means our poor gummy bear addict child is going to have to give
up her greatest love.
If she understood – she’d probably say the sacrifice is worth not having
those seizures anymore. It isn’t like we are talking a seizure every few
days folks. We are talking 5 or more events A DAY. And we count a
cluster of head drops as an event. A cluster of head drops has upwards of
50 to 75 seizures. She may have 2 or so of these a day. So the very harsh
reality of things is – she is having over a hundred seizures a day.
The hope – well of course I want a cure – I want no more of these things
EVER.
I’d still be overjoyed if these seizures were not a daily thing. If she had a
few events a week – or less. Heck yeah I’d call that a success.
Her VNS helps with the one type of seizure quite a bit – the one that is
kind of like a tonic-clonic (she does this odd posturing and trembling
thing). Its reduced the intensity and duration of those. Usually using the
VNS magnet can stop those.
So what if – just what if …. the diet can eliminate the drop seizures. All
those dang head drops. Or the sneaky atonic attack (imagine your child
hitting the floor like a ton of bricks – just suddenly and violently crashing
to the floor with ZERO warning). Yeah – I’d LOVE it if the diet helped
those, since the VNS has never helped those.
The odds are good. Most folks do see reduction in seizures with the diet.
Its just a matter of – is it worth all the effort.
Time will tell.
We go into Duke on October 4th to start the diet. Because the diet starts
with a 36hour period of fasting it has to be done in the hospital. That and
I’ll be getting TONS of training on how to weigh her meals, test her urine
and everything else I need to know. (Hrmm I already feel like an
honorary Neurologist, PT, OT, guess I can add dietitian to this list).

Monday, August 9, 2010 12:05 PM, EDT

I don’t remember the exact dates – and those are rather
irrelevant since it took me a while to get the doctors
attention. The fact remains, we are now at 5 years of
Rebecca having some type of seizures.
It all started out with these strange little eyelid
twitches. At the time she was a colicky little almost 2
month old. I was still breastfeeding her. When these events would occur
she would stop nursing. I knew in my heart, something was wrong. I tried
to explain it to the Dr. who was our pediatrician at the time. He brushed
me off. “Oh everyone’s eyelids do that now and then, its no big deal.” At
our next visit a few weeks later I brought it up again. This time I was
adamant. “NO! She stops nursing when it happens.”
I watched all the color drain from the man’s face. It was then I knew, in
my heart that my fears were confirmed. This is serious. He suspected
seizures. David and I had already talked, we were smart people. We had
looked online. We suspected as much.
We went to see the Neurologist at UNC. Appointment was horrible.
By the time of our Appointment Rebecca’s seizures had changed. No
longer innocent looking eyelid twitches, she was having what is referred to
as jack-knife seizures. Her arms flung out and her knees and legs pulled
up – or something like that. We have old video. It looks like someone
walks up to her and says “BOO!” but the scary part is it happens over and
over and over again in a period of 3 or 4 minutes. Occurring every few
seconds. All in all, in that time she might have 50 to 100 seizures. We
never really counted the number of individual seizures, not for years later.
We were to focused on helping our baby through these horrid things.
But at this first Neurology visit – the man they call a Doctor, did not care
about our video. He didn’t spend much time with our child. He told us
that she was having “simple partial seizures” and that surgery was likely
her best option. He sent us home with a prescription for Tegretol sprinkle
capsules. Keep in mind – this was for a 2 month old breastfed infant!
David and I were appalled. The MRI had not been done yet, simply
ordered. No EEG had been done yet, a “routine” EEG was being ordered.
We would learn soo much more about EEGs in years to come.
I think we saw him on one follow up visit, him still insisting the same thing
– despite the obvious pattern of her seizure.
All of that – 5 years ago.
We’ve come so far. Learned so much more about Epilepsy, Seizures, EEGs
and everything else in this world.
Rebecca has gone from that first diagnosis of “Simple Partial seizures”
to Infantile Spasms, which has now progressed to Lennox-Gastaut. She
will likely carry LGS for the rest of her life.
We will continue to hope and pray for a cure for Epilepsy.
I am so blessed that Rebecca is a fighter.
So no, we don’t have seizure control after these 5 years.
But we have a beautiful little girl who loves life. She loves people, giving
hugs and kisses (big wet slobbery kisses!)
She is learning so much. Yes, she learns slower than everyone else, she
learns at Becca speed.
Back when I was pregnant I never dreamed I’d spend my days searching
though websites with adaptive equipment.
I dreamed of spending days at the park, pushing my little girl on the
swings, chasing after her as she climbed up the slide.
It doesn’t matter that my days are not what I envisioned. I learned a long
time ago to make peace with those dreams. I’ve been able to embrace a
new future with Rebecca. One that involves getting snuggles on the couch
for years to come.
You see, there are blessings to having a child with major special needs.
The extra hugs. The reason to go into her room each night and watch her
sleep (I have to give her medication each night).
5 years of epilepsy. Not what I dreamed about when I was pregnant, no.
Nothing I’d wish on anyone. And I pray every day God will heal her.
However in the meantime I’ll have to look into her sweet face when she
climbs into my lap for a hug and a kiss and think, “I love you just the way
you are!”

Friday, July 23, 2010 12:50 PM, EDT

I am so happy with how Rebecca’s first week has gone!
Monday was great. She instantly adapted to her new teachers and her new
schedule. I got the cutest set of pictures, one of her in the car seat right
before we got to school, one when I put in in the car seat at the end of the
day, and one as we just pulled into the driveway at home.
The first pic she has this “why are you taking another picture of me”
expression.
Getting into the car at the end of the day, you can see her exhaustion, but she is all smiles.
When we get home – she is zonked out. She was alseep, until she heard the camera.
When we get home – she is zonked out. She was alseep, until she heard the camera.
The picture included for the journal is probably one of my favorites from that day. Its the encounter
of Rebecca and her teacher. So incredibly sweet.
The first week, and few days back after an intercession back are always the hardest on her (she is in
year round school, and was also for Pre-K). It just wears her out. I know she will be in bed super
early tonight, and sleep in late tomorrow.
So happy news – part of the routine in her classroom is setting the kids on the potty at diaper change
times (most of the kids are not fully potty trained). The first 3 days, Rebecca of course hated sitting
on the potty (same reaction we’ve gotten at home). Well yesterday they finally had a special needs
potty chair. In the afternoon they set her there, she didn’t scream and fuss and just sat there like a
big girl and then……
she peed in the potty!!!!!!
Thursdays have been one of our Therapy days for a long time. She is getting PT and OT on Thursday
afternoons. You may recall several months ago we decided to switch from PT twice a week to once a
week.
Well things continue to go so well that we are going to every other week. This is great! Another huge
step.
Seizures are doing a little better now that we are back on Clonazepam.
We’ll go back to Dr. Mikati in September. Around November is when we will have her annual MRI (our
first on our new Annual schedule – hard to believe it will have been that long between MRI scans)
We are working on self feeding – using a spoon, these days. She is doing better with this. The process
is still me holding her hand and guiding her through the motions, however she is getting the concept.
She loves to crawl up on the couch to snuggle or get attention. Its cute – except when she does it when
I am trying to eat something or use the laptop. Yesterday she crawled onto the couch and then tried to
climb into my lap (while the laptop was there). Okay, you say put the laptop down and snuggle your
child. But as soon as I do, she is ready to get back down on the floor and play again. Becca plays this
game of “up, down, spin around, elbow you in the ribs”
but all in all she is on a hot streak – the good kind!

Friday, July 16, 2010 1:15 PM, EDT

I can’t believe my baby girl starts Kindergarten on Monday! I am so
excited for her.
excited for her.
Yesterday we had her open house at school. Now granted I’ve already met
her teacher during Rebecca’s IEP meeting, but yesterday was the first time
Rebecca and her teacher got to meet. Rebecca loved the classroom. She
instantly started exploring the classroom – no fear. Not that I expected
any. Rebecca is the type of kid if there is someone there willing to pick
her up and hug her she is a-okay.
Instant love between Rebecca and her teacher. This class is going to be
great for Rebecca. She is in a class made up of Kindergarten through 5th
graders – all with severe and profound special needs. Including Rebecca
there will be 8 kids in the class, a teacher and two assistants (this doesn’t
include therapists who will be there to work with kids).
As far as her seizures go we are holding steady. We had a little bump in
the road when we tried to wean her off of clonazepam. That turned out to
be a mistake. Her seizures got worse. She started having bad atonic
(drop) attacks. She was having more seizures each day as well. I spoke
with her Neurologist and we went back onto her previous dose and things
have slowly but surely returned to normal. We are still dealing with a
strong gag reflex with seizures that is part of her new normal for seizures.
Sad to think that it has been nearly 5 years since we started seeing
seizures. It was at her 2 month well baby visit that I convinced her
pediatrician at the time that her repeated eyelid twitching episodes were
not normal.
Yet in these 5 years, she has never stopped amazing me. She has an
amazing wonderful determination. She has the most beautiful inner spirit.
I love to snuggle with her, and just sit there, the two of us gazing into
each others eyes – the same way most parents do with their newborn.
Its a joy many nights going in at night to give her the late night dose of
meds. I only barely have to wake her up to get her to take those pills.
Then she snuggles back down to sleep. Although some nights she is
awake and playing when I go in. but I enjoy the nights when she is
asleep. Then I get to watch her sleep.
My friends, you should all go in each night – at least for a week, and watch
your children while they sleep. Give them a kiss. Tell them how much you
love them, how beautiful they are, how much God loves them. I love to
whisper these sweet notions into her ear while she dreams. Life is going
to come at her hard and fast one day. I want her to to have absolutely no
doubt by then that she is loved, she is beautiful and God loves her.

Saturday, June 19, 2010 8:21 PM, EDT

We had Rebecca’s 5th Birthday party today. Prayers were answered – I
don’t think she had a single seizure during the party. She was actually
able to enjoy family and friends coming to see her and celebrate her
birthday. She helped open presents (although she was still more
interested in eating the paper, but oh well).
She did get tired, and went down for a nap before all of her guests had
left, but David and I are overjoyed that she had a great day.
This is truly one of the greatest Gifts from God for her Birthday. I can only
hope and pray she has many many more days like this – where she gets to
run around from toy to toy, or person to person having FUN! Being a kid.
After her nap she got to have her cupcake. I captured a very adorable
series of pictures of the cupcake progressing from a whole cupcake to mere
crumbs (too bad I didn’t have minutes or seconds instead of a date
stamp). They would make a really cute flip book. hahaha
She was so excited with that cupcake.
On another positive note – she is continuing to be very expressive.
Although still not verbal, I can tell she is TRYING to communicate more.
She is certainly getting better at answering yes and no. If you ask her
something and the answer is yes, you’ll usually get a grin and a nod. If
that isn’t an affirmative – well then I reckon I don’t know what else would
be.
She also continues to babble quite a bit, as if trying to talk – esp when
upset. For instance, at the end of the school year her Pre-K teacher had no
idea what I’d fed her at the end of year picnic. She asked her “did you
have hamburgers” (Rebecca continued making whatever noises she was
making) “Did you have hotdogs” (Rebecca got quiet)
I reentered the room – and Ms. Jones asked me which she had – of course
the answer was Hot Dog!
Please keep her in your prayers that this wonderful – fabulous God Given
Streak would continue!

Wednesday, June 9, 2010 8:00 PM, EDT

Rebecca had her last day of Pre-K today. A bittersweet day for
any parent.
I’m going to miss all the fabulous staff at Pearsontown. Words
can not express how good ALL of those people have been to her.
Even staff who don’t even work in the Pre-K room, or aren’t even
in the EC program know her and love her. Yeah I’ll miss them
(But sorry folks – I cheered for saying goodbye to the parking situation).
She will have 6 weeks off for break. During which will be her 5th birthday
coincidentally. Then she will be off to what has been referred to as “Big
School” (a term coined by those in the Pre-K program for Kindergarten
itself). Her new school is going to be Easley Elementary. Its on the other
side of town, but the teacher is fabulous and has been in this career field a
long time. Rebecca will also still have the same OT, since Erin splits her
time between both schools. This consistency will be good. Not necessarily
because its hard for Becca to adapt to new people – but because its hard
for new people to figure out Becca. Becca is a world class cheater when it
comes to working hard for PT and OT. She is a challenge. It takes a gifted
therapist to be able to work with her. To be willing to keep trying new
things – even throughout a singular session. I love my child, but she is
stubborn, and not every teacher or therapist understands her or can work
with her. So I am so very glad that we will have the same OT that knows
Rebecca and works well with her.
Rebecca has come so far lately with many of her skills. She is using her
hands better. Her left hand is more relaxed. We’ve even seen the pointer
finger show up when the hand is on the table. Not so much pointer finger
for activating a toy – but she can isolate pointer finger. She will fairly
easily isolate pointer on her right hand and use it, but she needs a little
help steadying her hand or arm. She has FINALLY learned how to put toys
into a container! She also continues to be so aware and alert. It is
beyond amazing. Even our Neurologist saw it and was overjoyed by this.

Wednesday, May 19, 2010 4:26 PM, EDT
Wednesday, May 19, 2010 4:26 PM, EDT

So this morning we had Rebecca’s Kindergarten transition meeting. Mostly
this was some formalities of signing some new forms since her IEP had
recently been done. I also got to fill out her Kindergarten registration
forms. But I also got to meet, and spend some time with her teacher.
Rebecca will be in a class next year with other children who have other
significant handicaps/delays (some of the older children technically being
labeled as MR – but little ones like Becca are too young for that formal
diagnoses).
The teacher, and her aids are GREAT! Rebecca is gonna love them. And
from what I’ve learned about her future classmates – Rebecca is gonna fit
right in – and have her work cut out for her as far as being the Queen of
the classroom (she has been the only girl in the class 3 of the 5 days for
this year, and the only girl at all last year!). So not being the queen of the
class is gonna come as a shock to her.
I got her School picture back today. I have to give major Kudos to
Lifetouch studios. Ya know for as much as people say negative things
about school pictures – these folks really do have a knack for children with
special needs. Ms. Jones had told me they took time with her and were oh
so patient. They got a good shot. Sure, she isn’t looking at the camera
giving a smile – but that isn’t Rebecca. What the captured IS Rebecca. In
all her sweet glory. And she looks so grown up, sitting on the bench,
holding the bear for a prop. I was worried she would eat the doll they had
as a prop (the doll as a prop was one of the options for the pictures), so I
gave the teacher one of Rebecca’s bears. Surprisingly enough she isn’t
eating the bear.
Seizure activity isn’t too bad right now. This past Saturday was REALLY
bad – one of the worst I’ve ever seen. But since then its been pretty
good.

Sunday, May 9, 2010 1:27 PM, EDT

Another Beach trip vacation is over. Yes, its nice to get
away, but it wasn’t the greatest of our vacations we’ve
ever had.
As far as seizure activity it started off okay – few
seizures seen. But it also started off with yucky
weather, VERY windy, then the rain came (both literal
and figurative).
Our drive down was nice enough. Rebecca seemed to enjoy the ride. She
didn’t sleep a wink on the ride down, but instead just looked out the
window and watched. At one point we stopped at a rest stop for a potty
break (for the grown ups, and a clean pull up for Becca). While waiting on
Daddy to come back to the Truck, momma spotted a lady with a dog, so I
walked Becca over to where they were sitting. The nice lady got up and
walked the dog over to Becca and let her pet the dog. Daddy was coming
back, so we thanked the nice lady for letting us pet her doggie.
Sunday was mostly R&R – we hit a few of the same ole gift shops we’ve
hit a dozen times before. Ya know what – not much changes year to year.
And not too much was open so we didn’t do too much.
Monday we actually made it out to the beach. Its a funny thing out there,
folks who don’t know any better hear that the house we were staying at is
4 lots back and think that is close. They don’t realize how much protected
dune space is beyond that – that is at least 2 or 3 more lots worth of
homes (and those dunes are HARD to walk over!). Becca did great and did
most of the walking to the beach. We hung out on the beach for a little
bit Monday, but due to the wind didn’t stay too long. Becca didn’t eat too
much sand, but did play with it!
Tuesday was our day to drive up to Manteo and visit the Aquarium – and
the “Christmas Shop” – famous among any regular visitor or local to the
OBX. Really a must see – its MASSIVE. Rebecca was actually more
interested in the Aquarium this year than in years past. Tuesday was the
start of the rain – it POURED most of the day – it was also when her
seizures started getting bad.
Wednesday was the day we went out to the beach again. This time it was
nice and sunny. We stayed out there for about an hour before heading
back for lunch. We lathered up Becca with sunscreen good – and when she
was taking a catnap on her beach towel I used mine to cover her up and
shield her from the sun. Its a darn good thing I did – saved her from
getting as much sun as Daddy and I got (which was WAY too much).
getting as much sun as Daddy and I got (which was WAY too much).
Becca had fun playing in the sand – eating some, but cramming more into
her ear of all places.
Thursday we rode down to Ocracoke but that trip turned out to be a bad
idea. I think we’d all gotten too much sun the day before. We rode the
ferry down, drove down to the village, too her picture by the lighthouse and
visited one gift shop before deciding no one felt good and heading back to
the ferry and driving back to the house. OH well. I don’t think Becca
understood why she was in the car all day. Poor thing. OH we did start
our day with a YUMMY breakfast out.
Friday was more chilling out at the house. We did get Becca into the hot
tub – which she liked, once she figured out she wasn’t getting a bath.
hahah!!!
Some good things with Becca
She sat in a regular chair whenever we ate out, or even at the house at
meals. We may have used a booster once or twice, but overall she just
sat in the chair like a big kid! And she was almost always oh so patient
waiting on meals when eating out. Only really that first night when we got
into town and decided to eat out and then get groceries was she harder to
control and that was because she was soo tired.
Whenever possible coming out of shops and stuff, we let her walk. If
Daddy had one hand and I had the other, she did AWESOME going down
stairs – even doing reciprocal steps going down a few times!!!!
The house we rented had an elevator, which in the end make it really easy
to childproof the steps – we put the gate we brought at the top of steps in
the den area, and just didn’t use the stairs. She could run around the den
all she wanted. But when we used the elevator Becca became our official
button pusher. She would use isolated index finger and push the button to
call the elevator (with some help the button wasn’t that easy to push,
thank goodness!).
She had a BLAST just doing laps in the den, “running” around the sectional
sofa. It was so cute. Who knew that such a large open room would be so
much fun for a child. That, and of course I pity the poor cleaning crew
because they will have some finger prints to clean off the windows –
hahaha. She LOVES to look out windows, so large sliding glass doors are
just a dream come true for her.
On the way home, we knew she was trying to have a bowel movement –
On the way home, we knew she was trying to have a bowel movement –
but it turned out it was much worse. To the point we had to pull over at
the next exit. Thank goodness there was a hotel right at the exit. I gave
Daddy a fistful of wipes from the container and left him to clean the car
seat and took Becca and dragged her into the lobby to find the bathroom.
Again – thank goodness I already had a spare change of clothes readily
accessible in the Truck.
I will probably call the Neuro this week, she has been having a lot of
seizures lately. And at least some of the ones I’ve seen I am fairly certain
are tonic-clonic.
Keep her in your prayers that we stop the seizure monster.
School year is almost over – Pre-K is almost done.

Sunday, March 21, 2010 4:28 PM, EDT

Rebecca is doing fairly well these days.
So I don’t have much details from our recent EEG. Mainly because we
nearly forgot to ask the doctor about the EEG! He looked it up while we
stood in the hallway as we were on our way out the door. Still shows
seizure activity, but something about the wave form patterns or amplitude
or something (?) was within normal limits for her age. Overall the EEG
looked better. I think all David and I really took home was “Better”.
So far it really appears the VNS is a blessing! Sure we don’t have total
seizure control – but its only a tiny fraction of patients that achieve that.
We are happy we are in the percentage that have reduced seizures,
reduced length of seizures she is having. Her quality of life is going up.
This means also we are weaning her off some of the medications we know
haven’t done much for her. This may allow us room later to put something
different on. But even getting her off so many medications will improve
her quality of life. Those medications are really hard on a developing
mind.
She is a VERY active child now. Who would have thought she has only
been walking a year. She is now learning how to go up and down stairs.
She can do it, but still needs some assistance. She is learning to walk
She can do it, but still needs some assistance. She is learning to walk
across the parking lot, holding hands like a big girl – this is more of a
cognitive skill than anything else.
Our next big thing will be her transition meeting in May. This will be when
we iron out all the details of her moving from Pre-K to kindergarten! As for
her annual IEP, which was earlier this month, we did decide to move her to
“Support Services” for PT, which means she access the school environment
on her own power now, and no long needs Physical Therapy at school. She
still gets OT and speech, and we still do PT and OT on a private basis. But
moving to support services is a big step. The PT will still be available to
her, should she need it, should anything come up – but there just won’t be
a set “15 minutes a week” or anything like that. But if say, the teachers
notice Rebecca’s gait is all wonky – they can have the PT come in and take
a look at things.

Saturday, February 13, 2010 11:14 AM, EST

Just wanted to let you know I added a few photos from us playing in the
latest NC snowfall today. Rebecca had fun playing in the snow. We didn’t
get to play in the last snowfall because she was sick with a really bad
chest infection. Today though, we got more snow and she got to play in
things. She really seemed to like things. for a child who used to HATE cold
things, she wasn’t hesitant to touch the snow, taste the snow or be
outside. Her boots made it a little hard to walk around, so she wasn’t very
eager to move but she didn’t do too bad (then again snow boots make it
hard for “normal” folks to walk!)
Seizure activity is still so-so but we are still going along with the Keppra
wean. So the fact things aren’t getting worse is good.
Soon we start with the big transition to Kindergarten for Rebecca.
Another EEG is planned for March 3, and follow up Doctor appointment with
Dr. Mikati on March 4th.
I’ll update when I know more from that appt.
HAPPY VALENTINES DAY

Wednesday, January 20, 2010 4:11 PM, EST

Rebecca is having a good 2010 so far. We are seeing lots of little things
showing how much she is learning. So much improvment with how she
plays with her toys. She is engaging with everything so much more.
Seizure activity is up and down. But we are titrating down the Keppra.
This is in hopes of adding Banzel later. Banzel is a drug specifically for
kids with Lennox Gastaut. We wanted to get her off at least one of her
other seizure medications that were not working very well before adding a
new one.
Keppra was never very effective, but it does seem like each time we have a
drop in the dose, there is a dramatic increase in activity for a few days.
But then it levels off, back to a baseline. The good news is that there has
been 4 weeks between drops in doses.
The VNS still continues to do fairly well. By and large she is having fewer
seizures, and mainly the events she does have are only about 30 seconds.
I’ve been really trying to track them, and keep a record of how long they
are lasting. I was shocked when I started to time them lately and seeing
how short they were. Of course she may not think so.
We are still seeing a pesky Atonic seizure pop up now and then – these are
the ones where she just falls down to the ground. She looses all motor
control. BAM. A little puddle of Becca. yeah, we need to make her wear
her helmet more because of these. But she is a con artist, she knows how
to act like she wants to snuggle with us like she wants to sleep, so we will
take it off, and then Poof she is ready to play again.
We also often put the helmet on when she has clusters of head drops. To
the untrained eye, these seizures might look like someone who is nodding
off to sleep/fighting sleep. You know – the classic head falling forward
then jerking back up – then a short time later repeating the pattern.
Except for her, this goes on and on for several minutes. She might have
upwards of 50 plus drops in that time. Being a little kid, she is still top
heavy, and un-coordinated so these sometimes make her fall down.
Hence, the need for the helmet when she is having these as well.

Monday, December 28, 2009 3:31 PM, EST

Christmas was pretty good! Rebecca had a great time
and was really interested in her presents. She had a
bunch of seizures Christmas morning and had to be
given diastat, but otherwise had a good time.
This morning she had her port taken out. We were at
Duke bright and early and were home before at 9:30
(withh most folks on vacation still many people were probably still home in
bed). Rebecca is doing really well today post surgery.

Tuesday, December 22, 2009 10:39 AM, EST

Rebecca continues to do really well. Sure she has had cold after cold – but
we’ve been told that comes with her age. So does her “sharing” her germs
with Mommy and Daddy. Thankfullly we are all getting over this latest
cold. The good news is though, that the ear tubes seem to be doing their
job and she hasn’t gotten any more of those painful ear infections. Praise
God!
Another praise is that the VNS seems to be doing some good. The main
beneft of the VNS is improving quality of life. So we are able to use the
magnet to swipe over the devise to stop seizures. Even when we don’t use
the magnet, it does seem her seizures are overall shorter.
The only sad thing is that the VNS seems to have no affect on the cluster
of head drops she has. These are the ones where she has many very small
seizures in a row – upwards or 50 or more (we don’t count the individual
seizures only the entire event). I talked to her Neurologist about this and
we agreed we could switch her to a different seizure medication in the new
year but first we would wean her off one of the less effective medications
first. The “new” medication is one specifically approved for kids with
Lennox-Gastaut and for drop-attack type seizures. Her doctor agreed this
drug is a logical choice to try to hopefully stop the ones the VNS is not
helping. (He seemed to appreciate my own research in the matter,
something that I could tell used to offend the previous doctor).
I am excited for Christmas. My immediate prayer is that Rebecca would be
able to enjoy the wonder and magic of Christmas without having seizures.
So often all of the over stimulation trigers seizures. Just once, I pray the
Lord would bless her and allow her to enjoy the Holiday like a normal
child. I want her to be able to rip open her presents, to play with her toys
child. I want her to be able to rip open her presents, to play with her toys
and to have FUN on Christmas and not worry about those stupid seizures.
Just for those two days (Christmas Eve and Christmas Day). I know the
Lord has the power to heal my Child. I pray it is in His will to grant her
so.
and I have the same prayer for all of my other young friends afflicted with
Epilepsy. Health to enjoy the Holidays.
Have a Blessed Christmas everyone. May 2010 bring you Healing.

Tuesday, December 1, 2009 10:12 AM, EST

3 years ago today Rebecca had the port put in to start the Chemo for the
optic glioma. She got Chemo once a month for 13 months. We left her
port in so that she could have easy vein access for all the MRI’s she would
need (and any other time she would need an IV). On December 28th she
goes in to take the port out!
I can’t believe 3 years ago we were starting Chemo for our baby girl. Going
up onto the 4th floor of the CHC of Duke – where all the really sick kids
are. All those little faces peering out from behind the masks. Masks,
because those kids have no immune system and any germs anyone else
have could be very dangerous to them. Such adorable little faces – but the
ones that make you grateful for what you have.
We met so many wonderful people. Some have won their battles, some
have lost their battle. But all taught us many wonderful life lessons.
And some of those children I will never forget (Especially Mackenzie “Z” –
her memory will live in my heart forever).
Thanksgivng is over – but the time of year to be thankful is not. Hug your
loved ones. Whether you face medical and or developmental challanges or
not – there are blessings to be cherrished. There is HOPE to be found.
Three years ago Rebecca was getting Chemotherapy and David and I were
scared out of our minds. Today – the tumor can’t even be seen on the MRI
and she is now going to go for her MRI once a year. Once a year! That is
a huge milestone for kids with NF.
This Christmas she is walkng. She is smilng and laughing. She babbles
quite a bit (no words – but she is “talkative”). The VNS magnet stops the
worst of her seizures. So there is HOPE that as we work her up to higher
worst of her seizures. So there is HOPE that as we work her up to higher
settings it may prevent these seizures. But we must go slowly with
building up her tollerance to the pulse. I know I probably don’t have that
worded correctly – but hopefully you get the idea.
Go and hug a family member today.
Pray for a loved one far off today.
Know that Rebecca and I love all of you and pray for you often.

Sunday, November 15, 2009 10:21 AM, EST

Well we’ve made it through several colds already (or one really long one,
who knows). and NO ear infection! Seems like the tubes are doing their
job! yippie!
Still having issues with seizures, but that could be in part to her having
lowered resistance because of the cold. Her body gets stressed when sick
– and that makes her more prone to seizures. (and as a sick joke – the
increase seizures lower the bodies ability to fight any infection, so she
can’t get well as easily, and continues to have more seizures – its a horrid
cycle).
School is going great and Rebecca is doing AWESOME with her gross motor
skills. She is learning to walk up stairs (she ALWAYS has someone right
behind her at all times), and EVEN going downstairs. Now all I’ve ever
seen going downstairs is resisting, but today I let her do it her way,
meaning leading with the foot she wanted to each time. I kept her left
hand on the banister, and held her right hand, and stood in front of her the
entire flight of steps (I went down backwards). She went down the ENTIRE
flight, just like a big girl. I couldn’t believe my eyes.
In medical news – she had her MRI this past week – all clear. And even
better, Dr. G said we don’t need to get another one for ONE WHOLE YEAR.
this also means we can get the port taken out, since the main reason we
left it in was so she could have easy access for sedation for MRIs. Yeah, it
means another surgery, but its another huge step in her overall health.
The port makes for super easy access when she needs an IV – but its also
a huge infection risk (each time it is accessed, not in general – its totally
closed under the skin).
Rebecca is our little girl on the go – right now she is running around the
house from toy to toy (each one going right into the mouth). But she
doesn’t stop. Eventually she will just crash – but that is how she goes.
Full steam ahead until she just runs out of energy. She sleeps for a while,
wakes up ready to go again and the cycle repeats.
Thank you for all your prayers. continue to pray that we have success with
the VNS and will be able to taper some of her medications.

Friday, October 9, 2009 10:08 AM, EDT

Yesterday was our first of many appointments to turn up the VNS – we’ll be
going in monthy for a while to keep turning it up to find the right setting.
Nothing unique to her case or anything – that is just how it goes.
We probably won’t really know much for 6 months I think Dr. Mikati said.
We are getting the hang of using the magnet when she has a seizure. Not
that we have to use it on each and every seizure – since the magnet is
really meant as an alternative to diastat. For times when she has a
prolonged seizure or a bunch of clusters. but we can also use it when we
see the Aura before the seizure. In essense there isn’t a wrong time to
use it – we can’t over use it (unlike medicine)

Tuesday, September 29, 2009 1:27 PM, EDT

Surgery is over and we’re back home. Everything went well.
Rebecca is pretty sore, which is too be expected. We’ve got to be careful
when we move her.
The device is at a low setting for now, but it is on. In two weeks we’ll go
back in, and they’ll start turning it up, to a more effective setting.
She did get the ear tubes as well!

Saturday, September 26, 2009 7:01 PM, EDT

Well, we are still a GO for the VNS surgery on Tuesday. Rebecca is still
healthy as of today.
We had our appointment on Friday with the ENT. The doctor was really
nice and is going to talk to Dr. Grant and see if she can’t arrange for the
few minutes it takes to put the tubes in to be done on Tuesday when
Rebecca is already getting the VNS surgery. This will be GREAT since it
would mean one less sedation. The ear tube surgery literally only takes
about 5 minutes, and she doesn’t forsee any problems with them letting
her have a few minutes time to tag onto the surgery.
Please pray this works out! Pray the ear tubes mean less ear infections for
Becca this winter. She is such a trooper with so many things, yet ear
infections are REALLY painful for her.
Hopefully the VNS surgery will be outpatient if all goes well.
The settings on it will have to be slowly turned up over the course of time,
so we won’t know anything for a while.

Tuesday, September 8, 2009 12:34 PM, EDT

So her VNS surgery is going to be postponed – Becca has another Ear
infection. Doctors don’t like to perform sugery on folks who have an active
infection. So the new surgery date is Sept 29th.
Oh well.
We also are getting a referral with ENT to hopefully get Ear Tubes. So
hopefully we won’t go through this – ear infection after ear infection this
winter.
***
On another note
I know I’ve mentioned Mackenzie aka Z a few times over the past couple
I know I’ve mentioned Mackenzie aka Z a few times over the past couple
years.
She lost her battle with Cancer
Her caringbridge update this morning read
Z’s earthly journey has come to an end. Snuggled in Tricia’s arms, she died shortly
before midnight. Z spent her final days surrounded by those she loves. Please offer
prayers of gratitude that she is now at peace.
I can honesty say that Z was one of the most amazing people I’ve ever
met – either child or adult. She touched many lives and I am certian that
her spirit will live on forever in the people she touched.
Thank you Z – for making David, Becca and I smile on so many occasions.
We will not forget you.

Saturday, August 29, 2009 9:35 AM, EDT

We got the stitches out this past Monday. That was a horrible experience.
The wounds had healed almost too nicely, and so getting the stitches out
was really hard. But Nurse Brandi was awesome and was really good with
Becca. We’ve known Brandi for a long time in the Neuro clinic and she
knows Becca well. After Becca got all the stitches out we visited the
Treasure Box and Becca got to pick out a prize for being soo good.
Becca is back in school after the surgery, and back onto her regular PT/OT
schedule. She is so happy back in school. Actually Tuesday it was rather
priceless. She practically raced down the hallway. I’ve never seen her
walk so well and so determined to get where she was going! Granted the
rest of the week didn’t go quite so nicely, but oh well.
Because Ms. Katie isn’t working at Lennox Baker any more we’ve had a bit
of change in our PTs. Rebecca gets to work with Lisa Mangino again!
Thats right – the same Lisa who worked with Becca for so long. We are so
excited to have Lisa back in our lives again.
Surgery for the Vagal Nerve Stimulator is still scheduled for September
9th. It should be an out-patient surgery, unless there are any kind of
complications. Even if Rebeccca has some issues waking up from
anesthesia we’ll stay overnight. Granted, we want to be in and out, but
we do have a safety net if needed.

Tuesday, August 18, 2009 7:21 PM, EDT

Becca continues to do awesome recovering. She had her first PT session
after the surgery today – she did great. Yeah, not the same endurance or
strength, but awesome!
She is going to get to start seeing Lisa again – the PT she saw when she
was really little up until early this year. Lisa is now seeing patients at
Lennox Baker (she was doing Home Health and kids who were inpatient at
Duke). So happy that Becca and Lisa get to work together again! We love
our other therapists, but Lisa has a long history with Becca, so its extra
special.
We go Sept 9th to get the Vagal Nerve Stimulator (VNS) put in.
Here is a link to the website for the VNS
http://www.vnstherapy.com/epilepsy/patient/index.asp
That can explain it better than I could.
I do have a prayer request – not for us, but for another child that is very
near and dear to our hearts.
We met Mackenzie (aka Z) when Rebecca was getting Chemo. She is the
most amazing child I have ever met – or will ever meet. Wise beyond her
years (heck, wise beyond MY years!)
She has been battling cancer for a long time, and well – things are pretty
grim right now.
http://www.caringbridge.org/visit/mackenziebaysden
As much as I want God to heal her completely so she can grow old to help
other kiddies with Cancer, I reckon the biggest prayer she needs now is
just that God would be right there with her. That she wouldn’t be in pain,
and that she can really enjoy her days – how many more she may be
blessed with (that her days would be a blessing).
(I’m gonna cry now, thinking about the world loosing this child)
Thank you friends.
PS – check out some of the pics I added of Becca in the hospital

Sunday, August 16, 2009 10:46 AM, EDT

Becca is recovering well. Her appetite is more or less back to normal. I
guess like all kids her age, she has ups and downs in her appetite, and she
is at the low end of her normal. Soon she’ll be back to eating everything in
sight. She is perking up as soon as David or I walk into the room with
food, which cracks us up. She is like a little puppy dog the way she comes
and begs for bites of foods, its so cute! (and she does a great baby bird
impression, opening her mouth and pecking her head forward).
It never ceases to amaze me though, how clingy our little girl gets after
hospital stays. Now granted, she is a snuggler by nature, but she turns
into what I lovingly call “Velcro girl” – because she clings to us like velcro.
You try to pry her off, but her little arms just wrap around you so tightly.
She practically climbs back up you.
We’re still working on getting her to not rub and scratch at her head, but
we are unable to keep any kind of wrap or bandage on there to keep little
hands off her head. She has pulled off everything I put on there.
We go on the 24th to get her stitches taken out.
I plan to take Becca to her PT appointment on Tuesday – it was one I didn’t
cancel and I decided we’d go and just give it as much as Becca was up to.
She needs the work out anyhow – and I know she will LOVE LOVE LOVE the
chance to ride the tricycle.
I hope to get David to upload the pictures he took with his phone while we
were in the hospital – he took a couple of Becca in some really cute
positions (she was asleep but in a strange position).
Thank you all for your continued prayers and support!
And thank you to all of our wonderful nurses in the 5100
I can’t even remember all the nurses we had over the week – but you were
all so wonderful to us! Thank you. (ohh and the nurses in the PICU that
one night too!)

Wednesday, August 12, 2009 7:43 PM, EDT

I’ve realized over the past week a few things I never realized how much I
took them for granted
took them for granted
– Wood sub-floors (walking around on concrete floors all day hurts your
feet, Hospital floors have zero give to them. Your typical house flooring
has the sub flooring to give it that give (and usually that sqeak!).
– Being able to just walk into the kitchen to get what I want, when i want
it. No trying to make sure Becca is securly in her bed and trodding down
the hall to the ice machine/water fountiain to get something to drink (or
make my Crystal Light with).
– Not having to hear other children have temper tantrums at all hours of
the day and night.
– SILENCE, no monitors beeping, the constant claning of the little metal
rack where charts are kept, or the opening and closing of 3 ring binders.
– 2 ply toliet paper (that industrial hospital toliet paper is cheap!)
– Being able to give my child her medications on OUR schedule not the
nurses/hospital.
Ahh – so glad to be home!

Wednesday, August 12, 2009 10:56 AM, EDT

Home at last, home at last, Thank God Almighty we’re Home at last
(My Apologies to the Rev. Martin Luther King for rewording his famous line
– but its just perfect for how we ALL feel)
Rebecca was so ready last night she managed to remove her port access –
aka “De-access herself”. Thankfully the IV had been stopped and she’d
already been Heparin flushed, but its still too funny. She was pretty much
pitching a fit anytime she was in the crib too – she wanted OUT!
She is sleeping comfy cozy with Daddy on the couch now.
Now for a few days to just chill out and relax.

Tuesday, August 11, 2009 11:16 AM, EDT

well she ate pretty good for Breakfast, unfortunately she has had a minor
“setback” through the night. She has had a slight fever on and off.
Because she is post-surgery we have to stay another day to make sure it
doesn’t get worse and that there are no signs of infection.
Major bummer. We really wanted to go home. (that and the kid in the
room next to us is being a royal pain and keeps having major temper
tantrums and screaming)
Pray her fever goes away!
*minor update* – since the room we were in is one of 2 rooms wired for
Video EEG, they needed to move us to another room so they could use it
for a patient coming in who needed the Video EEG monitoring (VEEG). We
were on the VEEG monitor until they took her strips out yesterday.
guess the good news is, we aren’t next to temper tantrum girl anymore!
(she had 3 or 4 screaming fits last night between 8 and when I finally
passed out, not because she was in pain, but because she wasn’t getting
her way)

Monday, August 10, 2009 3:04 PM, EDT

So all the electrodes are out. The surgeon put a very thin layer of titanium
mesh along the area of the front where those holes are. He said the other
holes he could cover with muscle, but the ones in the front he put the
mesh to give her a little bit more protection as the bone grew back in.
She obviously still grumpy and we are managing her pain. But she has
already drank some chocolate milk with the gusto we are used to seeing
her drink with! She snuggled and slept on David for a good bit as well.
Hopefully we’ll head home tomorrow!

Sunday, August 9, 2009 7:43 AM, EDT

So just saw one of the Neurosurgeon’s and found out we are on schedule
for first thing in the morning (don’t know what that means, but really early
I suppose). He said they bumped her to the first case. All the better for
her though!
So we’ll go home Tuesday! The end is in sight. Although I know we really
NEED Becca to eat and drink better. So please – all my prayer warriors,
pray she gets her appetite back. Becca is NOT a picky eater, or a chid who
would normally ever turn away food or drink. We are dangling some of her
very favorite foods in her face and other than gummy bears she is pushing
away most everything. She just doesn’t want to open her mouth.

Friday, August 7, 2009 9:39 AM, EDT

Like clockwork – day 3 and the swelling commenced, and this isn’t even as
major as the other sugery.
Well, the doctors met and talked, and it seems that the activity does
mostly come from the right temporal lobe, but enough activity is seen
everywhere else to say surgery is not a option. So the next step would be
a VNS (Vagal Nerve Stimulator). So they will monitor her through the
weekend, She is on the surgery schedule for Monday to remove the leads.
Monday they will take them out and we should go home Tuesday.
Then we’ll give her a month or two to recover and decide on the VNS.
She ate a little bit better breakfast this morning and even drank a little bit
of her chocolate milk!

Thursday, August 6, 2009 8:01 PM, EDT

We’ve spent most of the day trying to coax her to eat and drink. She still
hasn’t been very eager about either. I reckon part of her refusal to drink is
she is so well hydrated with IV fluids. But we’ve gotten her to eat a little
bit more at each meal. Dinner tonight was Chicken Tenders, so those cut
up into teeny pieces were gobbled up because she could do it herself when
I gave her the bite. But it wears her out fast.
She did get to snuggle and sleep on daddy’s lap for about 10-15 minutes
today. Moving her isn’t easy, aside from managing her pain there are also
the wires to worry about.
Those EEG electrodes from inside her head are attached to a small
backpack with little jumper boxes. During a normal EEG she only has 1
jumper box thingy in the backpack. But because of the number of
electrodes there are 3 of them. Not something she could lift herself. Plus
the lead from the wires from her head to the backpack isn’t all that long
(the backpack is sitting beside her head on the bed). So to manage that,
all the other typical hospital stuff, it takes 2 people to move her.
The good news – and those that know her well can appreciate this. She is
still excited about gummy bears. Put a bite of food in front of her and you
can see the “ehh” reaction though eyes that are only halfway open. Put a
gummy bear in front of her and those eyes open nice and wide and she
looks at the gummy with that look of “ohhh!” Then her little hand reaches
out and grabs it and she shoves it into her mouth. Gobble Gobble!
Our baby LOVES her some gummy bears (The Target brand gummies are
especially soft, and flavorful. Total oposite of the traditional “Haribo”
brand! Whoda thunk the tarjay brand would be head over heals better, but
it is.
The doctors are going to have their big Epilepsy conference tomorow. This
is where they will look at all the data they’ve gotten, her scans etc and try
to come up with a next step. We don’t know the time, only “morning”. It
isn’t something we get to attend unfortunately, but it does mean that by
mid-afternoon we should know something.

Thursday, August 6, 2009 7:43 AM, EDT

Rebecca and I both had a fairly restful night.
After my last update thanks to my faithful prayer warriors we were able to
coax her into eating more pudding. yippie! I’ve given her a few bites this
morning, but it was about the time she needed more pain medication, and
she was just getting to sore to use the energy to eat (I imagine using your
she was just getting to sore to use the energy to eat (I imagine using your
mouth and jaw to open for food is hard when your head hurts as bad as
hers does). So we’ve given her some more medicaiton and will give that
some time before giving her some Applesauce (a favorite food!)
They are gonna take out the catheter today. I know – a catheter for a kid
in diapers? But it is so they can easily measure fluids in and fluids out
during that period right after surgery. They will also take out the 2nd IV
line in her left hand. It hasn’t been used since the surgery, but was there
just in case. They kept saying they wanted it in case her other IV fails. I
finally convinced the Dr they can use the Dang port if her IV fails, it was
stupid that it wasn’t used in the first place. All she keeps doing is chewing
on the IV access. (I think its a bit of “Hrm what is this – get it off my
hand!”)
I feel badly because she so badly wants someone to pick her up, but she
hurts to badly for us to even get our hands under her.
She has signed eat a couple times to get a few bites of food.
And yesterday – maybe she was playing, I dunno – but she signed “More”,
we couldn’t figure out more what, but she kept signing more. She has
NEVER signed more before. I know this isn’t even THE epilepsy surgery,
but still, a major communicaiton breakthrough.
Dr. Grant said they will likely have their conference on Friday to discuss all
the data.
Keep up those prayers.

Wednesday, August 5, 2009 4:33 PM, EDT

We are settled into the room now (5103). I went home and took what was
perhaps the best nap of my life! David stayed with Becca.
Rebecca is still getting pain medication pretty much every few hours to
control her pain. We still haven’t coaxed her into eating or drinking.
We’ve given her drops of apple juice through a straw – but she has yet to
suck or drink on her own. We’ve tried giving her bites of yogurt on a
spoon, but she isn’t very interested. poor baby!
Now we just settle in, and “push the button” every time we see a seizure
event.

Tuesday, August 4, 2009 7:20 PM, EDT

We’ve been into the PICU to see Rebecca, she is still really groggy and
sleepy, so we’re just trying to let her sleep for now. They gave her some
additional pain medicaiton, since she seemed to be pretty uncomfortable
(you would be too with holes in your head!). But the more she rests now
the faster she can heal.
But so far she seems fairly responsive to David and I. Tomorrow we’ll get
moved to one of the EEG monitored rooms in the 5100 unit.

Tuesday, August 4, 2009 3:07 PM, EDT

Rebecca is out of Surgery and we are waiting to see her in the PICU
Dr. Grant says everything went well.
I’ll update more tomorrow once I’ve seen her etc.

Monday, August 3, 2009 1:29 PM, EDT

Today was pre-op
we did learn one thing today, that was different than what we thought. It
isn’t going to be all one admission like we were under the impression it
was supposed to be.
Evidently this will just be the 1st surgery (the intracranial EEG leads).
Then after they get all that data that they are happy with, they will remove
those, keep us another night or so, and send us home. Once she is back
at her baseline, we will return, and THEN proceed from there. Dr. Grant
said the risks are to great to just proceed with grid placement right away.
She needs some time to heal.
So whereas it doesn’t mean as much consecutive time in the hospital as I
thought, it will mean more back and forth than we thought. oh well.
We’ll know for sure after 4 today what time the surgery is, but Dr. Grant
thinks it will be about 9 or 10 am tomorrow. It should last about 4 hours.
Still expect 1 night in PICU, then off to one of the EEG monitoring rooms in
the 5100, likely 5102 again.

Saturday, August 1, 2009 9:36 AM, EDT

Well Tuesday is going to be our big day!
The past month has gracefully flown by. We did manage
to switch Rebecca’s Keppra back to regular Keppra from
the Keppra XR and that has helped, but she is still in
somewhat of a rough patch in regard to her seizures.
But don’t fret – that is a GOOD thing, going into this
surgery. The first part of the surgery is to implant EEG electrodes, and
monitor her seizure activity. So we WANT the seizures to continue, hard
and heavy once we get into the hospital, so the doctors can get lots of
data to make the right decision.
Becca started her new year at Pre-K. Same classroom and same teachers,
but this year the 4 year olds go 5 days a week, all day. So Becca is going
to school as much as a Kindergartener! It wears her out, but she enjoyed
it. They even take nap during the day.
she has had a few bouts of digestive issues (I’ll spare you the details),
and has missed a few precious days of her only 2 weeks of Pre-K before
the surgery, and missed several sessions of OT or PT, but keeping her
healty before surgery is important.
I’ve been helping her walk into school this year, so instead of riding in her
wheelchair to and from the classroom, she is walking in! Just like one of
the big kids. Well – not quite, she requries a lot of hand hold assistance
to keep a distracted 4 year old from sitting down to play where she is, or
walking up to any and every stranger in the hallway to say “Hello” in her
own special ways. I am so proud of her. Even other teachers at the
school, who just know Rebecca from seeing her in the hallway are amazed
at how well she is doing and have commented on her progress to me.
Rebecca even has a special teacher friend at school, that isn’t even her
teacher! Ms. Eubanks teaches 4 grade, but Rebecca loves to stop and say
hello to her each morning. The first day of school she toddled right up to
her and gave her a big hug. I don’t know who was more ready to cry, the
teacher or myself.
The attached picture is from her first day of pre-k this year.
Continue to pray for us as we have her Pre-op on Monday, and surgery
Tuesday. I’ll do my very best to keep this site updated after her surgery is
over (Duke has internet access so it shouldn’t be a problem).

Sunday, July 5, 2009 3:24 PM, EDT

Becca is having a really hard time with the mornings lately. I don’t know if
it is because we switched her to the Keppra XR (extended release) and she
only takes Keppra in the morning and it isn’t staying in her system like it
should, or if something else is going on. But lately she is having some
really bad spells first thing in the morining. Spells bad enough to freak me
out! I’m going to call her neurologist tomorrow to see what I should do.
She did enjoy the fireworks last night. We had bought some fireworks and
set them off in our driveway. Well – Fireworks according to NC standards.
Which means glorified sparklers. but hey – they are pretty. Rebecca liked
them – except some of the noises did startle her. The brightest, flashing
lights are the ones she liked best. The kinds that give most people
headaches. It is hard to believe that just one year ago she was so sick
because her shunt had failed. We didn’t know that was what was making
her so sick and so lethargic. But a year ago she could barely stay up for an
hour at a time.
This year she is walking, playing, and doing pretty good (except for first
thing in the morning).
We have a surgery date – for the doctors to place the intercranial strips.
That surgery is August 4th. We don’t know how many days they will
monitor her that way. Presumably after they monitor her that way for
several days she would have a 2nd surgery to place a grid on brain surface
to do motor mapping and to pinpoint precisely where the seizure originate.
the grid would not cover the entire brain – but only a portion of one
hemisphere.
I will keep everyone up to date through the entire surgical process since
Duke has wi-fi access, and I take my laptop with me when she is in the
hospital.
Right now, we all just need prayers to get through the next month to get
to the surgery date. As you can imagine, anxiety levels are fairly high.
Rebecca will start back to pre-school in a couple weeks, and go to school
as planned, until her surgery.

Thursday, June 18, 2009 6:56 PM, EDT

So the latest and greatest…..
We met with Dr. Grant – the neurosurgeon, and he gave up ample time to sit, talk, discuss, ask questions.
Actually, I was fairly impressed with the time he gave us. He of course had answers to many of our
questions before we even asked them. He was glad we had a list of questions.
He helped us have a really clear understanding of the “plan” (I say plan because we have not committed to
anything.
also, he was great about saying how they can advise David and I, but ultimately it is our decision. But as we
progress, everything is a team decision. No decisions would be made without consulting with us.
(I’m so impressed because of how often we’ve been blown off, only learned of things through “eavesdropping”
as the doctors talk outside our door, etc. This was a wonderful change of pace).
We also met with Dr. Mikati, her neurologist. He is a little more “gung-ho” to go ahead and proceed.
Supposedly he is going to have the secretaries in the department call us to set up surgery. (I really need a
good shocked smiley face to insert here!)
So the “plan” as we’ll call it, is to do some inter-cranial monitoring. They want to insert these strips into her
right and left temporal lobe (and I think perhaps it was the frontal lobe?), to first determine is the majority of
the activity is occurring on the right side. The hope would be that if she had, say, 20 seizures while being
monitored then all 20 would occur on the right side. But if she has 20 seizures and 18 are on the right and 2
are on the left, they might proceed, under the hope and presumption that it would stop most of her seizures
and the remaining few could be well controlled with medication. The worst cases are either that they see 20,
and quite a few occur on the left. Or that the ones seen on the right side are not her typical seizures, but
the ones seen on the left are. Again – we know the damaged side is the right hemisphere. The technical
term is Cortical dysplasia – it just means that the brain didn’t develop properly. No diseases, it just didn’t
form properly. The data they have suggests the seizures are occurring on the right. but you don’t just
proceed with removing part of the brain until you are sure.
So – after the strip monitoring – as long as we see scenario 1 or 2 – vast majority of her typical seizures
occurring on the right side, then they would proceed with placement of a grid. The grid goes onto the surface
of the brain and is a much more major surgery. It was explained to us, that they can do the motor mapping
while she is still under general anesthesia. Because she is so young, non-verbal and doesn’t follow
commands well, they would use different kinds of mapping. An adult can be told to do things like “say cat”,
or “Wave your right arm”. Not so much with Becca. But we were assured that they do take into
consideration all of the motor areas and other important areas. (Speech is on the left side of the brain).
so after monitoring with the grid for a while (week?) – she would go back into surgery and they would take out
the grid. At that point, IF all the data looks good, then they could proceed with surgery. At this point we
have no way of knowing how much they’d want to take out.
If the data looks shakey, or indicates surgery can not proceed, we can consider a Vagal Nerve Stimulator.
But that device has a much lower rate of seizure control. And, considering Rebecca’s seizures we doubt it
would be of little help.
So now, David and I have some major decisions to make (not that we haven’t been thinking about this for
weeks). Its just finally coming down to decision time.

Monday, June 15, 2009 2:45 PM, EDT

So today – we FINALLY get the call (I had to call a few times to harass
them because they were supposed to call Friday, and I’ve been sick with
anxiety waiting). They aren’t 100% certain all the activity is localized to
one side of her brain.
So now David and I have the heartbreaking decisions of deciding to
proceed with the intra-cranial monitoring or not. And IF it looks like all the
seizure activity is coming from the right side – do we proceed with surgery?
We’ve known for fact that the right side of her brain did not develop
properly. today the doctor said something about the left side having some
structural abnormalities that showed up on the MRI (we have never heard
this before).
We’ve got meetings Thursday with both the Neurosurgeon and the
Neurologist to discus the matter.
So we really don’t know anything more than we knew a few days ago 😦
Hopefully we’ll know on Thursday were we are going from here.

Thursday, June 4, 2009 2:57 PM, EDT

So we are still waiting on her doctor to call us back, but here is the “low
down” from our much anticipated appointment this past Tuesday.
They had not been able to have their conference yet, but it was supposed
to take place Wednesday morning.
What Dr. Mikati does know is that to clearly determine where the seizures
originate and how much area of her brain is seizing they would need to do
Intercranial EEG monitoring.
http://docs.google.com/?hl=en&tab=wo#all
the placement of those electrodes is major surgery in and of itself.
she would have about a week of monitoring, then they could decide how to
proceed with surgery. The surgery she would need would be a
hemispherectomy (on her right side)
http://en.wikipedia.org/wiki/Hemispherectomy
How little, or how much needs to be removed depends on the EEG results.
Ideally they would have a very small area to take out. But they know that
the right hemisphere is not properly developed. Dr. Mikati used the
diagnosis Cortical dysplasia
http://en.wikipedia.org/wiki/Cortical_dysplasia
The intracranial EEG would help the team decide exactly how to proceed.
They would want to take out every part that is seizing, but obviously to
not leave Rebecca in worse condition than the leaving things alone would
cause. But if they don’t get out all of the brain matter that is seizing, she
would continue to have seizures.
As the Wikipedia page says, we will expect her to have limited use of her
left hand after surgery. But she doesn’t use it much now anyhow, its taken
years of OT to get her to use it at all.
We know that the surgery has a success rate of anywhere from 50-80%,
but that the doctor thinks in Rebecca’s case it would be closer to 50 than
80.
Relying on medication alone, she has a chance of becoming seizre free
somewhere in the low single digits.
somewhere in the low single digits.
Even the other surgical option, a Vagal Nerve Stimulator,
http://en.wikipedia.org/wiki/Vagal_Nerve_Stimulator only has a success
rate in the low teens. (and has MAJOR side effects and can NOT be
removed).
Please pray for David and I as we make what is one of the hardest
decisions a person can be asked to make.
David said it best the other night – the only harder decision a person could
be asked to make would be when to “pull the plug” on life support. We are
being asked to allow them to remove part of our child’s brain – with the
hope it would stop her seizures. The recovery would be long, and painful
for Rebecca.
Please, please pray for us.
*Quick note a few hours later* They weren’t able to have the conference
yesterday as I was told because the Neurosurgeon was out of town.
Evidently the Nurse/Secretary didn’t see it important for him to attend
since most of the other doctors were attending. (I want to strangle that
woman, because now we have to wait a WEEK before they have their
conference)

Friday, May 22, 2009 11:01 AM, EDT

Just wanted to update and let everyone know that Rebecca has been on
fire developmentally! She has been moving non-stop. Her walking is
getting soo much better. She still prefers to hold onto the wall, or your
hand, but you can really tell the difference in how much she is holding onto
you.
she is also making many more attempts to communicate. We have a
special communication device, where I can record a message, and Becca
pushes the button. Right now I have it set to “More”, so Rebecca can push
the button at meals, etc, to request “More”. She fully understands how to
use the button. Previous attempts the button was only a toy. Since I only
have the one, I am using a card to represent “All Done”, and she is quickly
learning to grab the “All done” when she is done (or in the case of dinner
last night, she didn’t like it and wanted something else).
Pray that Rebecca continues on this upward spike. We are used to her
having periods where her development spikes, then she will plateau for a
having periods where her development spikes, then she will plateau for a
long time again. I just hope and pray that this spike lasts a long time,
and that everyone involved in Rebecca’s life is able to take full advantage
of it, to teach Rebecca as much as she is willing and able to learn right
now. And pray for me – as my baby is doing so major growing up. Having
a child who is delayed, its tough seeing her grow up. I have to remember
to let Rebecca do for herself more.

Sunday, May 17, 2009 8:22 AM, EDT

We got back last night from a week at the Beach (Outer
Banks of North Carolina). Its kind of an annual tradition
for our family. Becca tolerated it really well this time.
Previously she has not been fond of the long trip there,
the wind of the sand. This time she was really good! I
think she really liked the sand (or it must have tasted
good, she kept trying to eat it anyhow!). We got to go to the aquarium
again. I know she enjoyed seeing the fish, and everything else. In one of
the tanks they even had a Sea turtle that really did look like a mini version
of “Crush” from “Finding Nemo”. It was really cute, and seeing the reaction
of all the kids was priceless (they are how I learned he was named Crush).
The water in the pool at the house we stayed at was a bit cold, but still,
Rebecca did a great job in the water. that being said, one of the days all
three of us were a bit chilly, so we all jumped into the hot tub after a while
in the pool. Rebecca fell in love with the hot tub. I know next time we go
to Grandma and Pop Pops house she is going to want to get into their hot
tub (or in the words of my neice Ashlynn, “Hot Pool” – I love you darling.).
Rebecca did some growing up while we were there, or at least in her
mommy’s eyes. On our way home the high chair at Burger King was way to
small, so she sat on the booth seat, right beside me! And she sat very
good. For a child who learned to sit up late, and sometimes has a little
trouble with trunk control, she had no trouble sitting at the table, just like
a big kid. She even ate her Cheesburger without me tearing it into little
pieces! She reached across the table for her fries when she wanted one.
(she did the same for her drink, but only succeeded in tipping it over, she
still needs help with that task, if her drink isn’t in a sippy cup).
I’ll add some pictures soon – but I’ve been informed the princess has
awoken on this Sunday morning.

Friday, April 3, 2009 8:05 AM, EDT

we got home yesterday afternoon. Becca went to be around 4pm. I fed
her some yogurt when we got home since she had not eaten food since the
night before. They have to be NPO (nothing per oral) for the sedation for
the scans. She was tired around 4, so I put her down for a nap, fulling
expecting her to wake up after a bit, ravenous. She slept through the
night. We had to wake her to give her both her dinner and bedtime meds.
I crashed around 6pm. I barely made it through dinner. I can’t believe I
slept ALL night and until 7am. (we’ll continue to catch up on rest today).
We won’t know scan results until we go back to the doctor on June 2nd.
For now, just pray that Becca gets the rest she needs to recover from the
stress of the hospital stay. Stress = more seizures.

Wednesday, April 1, 2009 1:06 PM, EDT

We are here hanging out at Duke, Becca has had both of her SPECT scans –
they do an ictal spect and an inter-ictal spect. Bascially for the 1st one
they wait until she is having a seizure, inject her with the (radioactive)
dye, and then go do the scan. Then 24 hrs later they inject her again when
she is NOT having a seizure and do another scan. Then they will run some
fancy computations to subtract one from the other. The scan detects blood
flow in the brain (or something like that).
Tomorrow we go for the PET scan – and my poor child will once again have
to become radioactive (she already growls like the Incredible Hulk now she
is gonna turn green). This scan is also done during a period when she has
NOT had a seizure for something like 1 hour. I know the PET is compared
to the MRI to see brain function.
basically with all of this they are trying to determine if her seizures are
localized to one area, and if so, would that be an area that could be
removed to give her a great shot at having no more seizures.
I overheard her Neruologist in the hallway when they were doing rounds
before they came in, and I reckon they need to determine if Rebecca has
before they came in, and I reckon they need to determine if Rebecca has
true Lennox-Gastaut (LGS) or Pseudo LGS. I guess some kids have most of
the symptoms of LGS, but the wave patterns that show up on the EEG are
different. Traditional LGS patients do not respond well to resection
(removing the bad part of the brain). However, patients with Pseudo LGS
respond very well. They will need to carefully study Rebecca’s EEG
patterns, the SPECT and PET scans and her MRIs to determine what the
best course of action will be. Sometime in the next month a team of
Neurologists will hold an Epilepsy Conference to discuss Rebecca’s case.
Then around the first of June, David, Becca and I will go back to see Dr.
Mikati again.
That is about all I know for now – the princess is settling down in her crib
for now – hopefully to take a good nap. She and I both slept well last
night, hopefully tonight is as good of a night.

Sunday, March 29, 2009 1:19 PM, EDT

I just got an urgent prayer request from one of my friends from my
Infantile Spasms message board. Her Daughter Maddie is in remission
from Leukemia, but is currently in the PICU because she is septic
http://maddiegorman.wordpress.com/
She is a gorgeous little girl. Please pray for her healing, and for strength
for her family as they pass through another trial.
thank you!

Saturday, March 28, 2009 4:37 PM, EDT

Just wanting to ask for your prayers since we head off to Duke on Monday for Becca
to have more seizure monitoring done. This is all to try to determine a focal point for
her seizures. We don’t know how long we will be inpatient. Basically until they
capture what they feel like they need to capture. Doctors want to know if their is a
capture what they feel like they need to capture. Doctors want to know if their is a
focal point that can be safely removed to reduce or elimate her seizures since
medication is not controlling her seizures.
Pray that we keep our sanity. it is hard to keep Becca from chewing on all the cords
and wires, and to keep her happy, contained to the hospital crib bed. and for David
and I, just being stuck in the room. David goes back and forth between home and the
hospital, and that get tiring for him (esp since he also adds trips to work for partial
days at work).
Becca continues to play well, and loves playing with all her toys, and toddling all over
the den. She has the most wonderful belly laugh in the world, and it is so much fun
for David and I to get her started laughing (blowing raspberries at her usually does
the trick).

Saturday, March 21, 2009 6:38 PM, EDT

Just wanting to let everyone know how well Rebecca continues to do with
her walking. She isn’t all over the house – but we do keep her corralled to
the den. But she can walk wherever she wants to in the den without help.
The rest of our downstairs needs MAJOR childproofing, since Rebecca loves
to grab anything she can get a hold of and put it into her mouth. this
means ANYTHING on a table, or ledge that she can reach. And trust me
when I say, you should never underestimate this child’s reach. So for
everyone’s sanity, her world is the den (plus it is carpeted in here, so some
padding for falls).
She has started doing a lot of babbling – baby talk if you will. She is doing
her little chatter constantly. Its so cute. Very Pre-Language/Pre-Verbal.
The cutest thing is her laugh. All you have to do is make the raspberry
noise and she howls with laughter. the more you do it, or the longer you do
the sound, the harder she laughs. her laugh is contagious, so before you
know it you are laughing. Then she is laughing at you! It is all great fun!
Only another week before we go back to Duke for the SPECT scan, A special
type of scan to try to find the focal point for her seizures. We’ll be
inpatient for a few days (any of our friends who are often at Duke, if you’re
there the 30th or 31st look for us on the 5100)
there the 30th or 31st look for us on the 5100)
Becca’s ophthalmologist, Dr. Young wants us to consider the surgery for
Strabismus. This is the misalignment of her eyes that prevent her from
having binocular vision.
Guess that is all I have to update for now. Happy Spring!

Saturday, February 21, 2009 6:31 PM, EST

Rebecca has been doing FABULOUS lately. She has been taking lots of
independent steps. She isn’t totally walking by herself (using that as her
primary means of mobility). But she is getting more confident, and is able
to take about 10 steps by herself with very little prompting (or bribery with
Gummy Bears).
She is doing several other little things here and there that show great
improvement developmentally.

Saturday, January 17, 2009 6:37 PM, EST

So Rebecca had her Video EEG this past week. All I can say is I am glad
that is over with. We don’t have any specific results. I had spoken with her
doctor on Wednesday morning, but haven’t since. I know they still know
most of the activity is coming from the right side of the brain. They
decreased some of her meds while she was in the hospital to bring on
more seizures. So the doctors got lots of information to review. They are
trying to schedule a SPECT scan to further determine the focal point. You’ll
have to Google that one yourself – all I know is that when she is having
the seizure a nurse will inject her with the special dye, and then Rebecca
will go get a special scan of her brain. It measures the blood flow. The
theory is that there is increased blood flow in the area of the seizure
activity.
Anyhow, we are recovering from the hospital. It was nice while we were
there that Rebecca got to have one of the same nurses that she had back
when she was little and last admitted to the 5100. Lucy is a GREAT nurse.
It was so cool that she remembered our Rebecca. I had remembered that
there was a nurse that we had really loved when we had been on the 5100
there was a nurse that we had really loved when we had been on the 5100
before, but I couldn’t recall who it was. But after a short time talking to
Lucy again, I remembered it was her. Thank you Lucy for taking such good
care of Rebecca (and Thank you to Tonya, Stephanie and Rachel as well).
One thing we still struggle with and hopefully one of our faithful
caringbridge readers will have an idea – is persistent serious gas. I don’t
mean a little bit of burping and farting. I mean excessive. Within a short
period of time you figure out that there is no possible way that it is
normal, or healthy. And her belly is distended. I’ve taken her to the ped
once, but they didn’t really offer much help.
On top of that, we are back to her intermittent vomiting. She threw up the
morning before we went in for the Video EEG. We thought maybe dinner
from the night before was “off”. Thursday when we got home, she threw up
again. This time, the her bed looked like a scene straight out of the
Exorcist. There was puke EVERYWHERE. Poor baby! Yet neither David or I
heard a thing. Friday she didn’t want to eat much (can you blame her).
Then she threw up again this morning when I was attempting to give her
breakfast and her morning medicine. She went though this a LOT as a
baby. She’d throw up once a day, on and off. It would come and go. It
might be a couple times in one week then disappear for weeks at a time.
All we were ever told by the doctors then was “All babies spit up”
Something isn’t right. I don’t want to see to hypochondriac, but I just know
something is wrong with her GI tract. Hopefully one of you who follows her
story will have an idea. And yes, she does take stuff for reflux.

Sunday, January 4, 2009 2:02 PM, EST

Rebecca is doing well, we had a good Christmas and New Years. I’ve
enjoyed all the time with David at home, and I know Rebecca has too. She
did have her usual, expected increase in seizures right after Christmas. The
holidays are so overwhelming for her.
She has rung in 2009 with yet another cold. This is her 3rd cold since early
September. She managed to get me (mom) sick right away this time too.
Lucky me.
A happy thing to share is how much Rebecca is just letting go of things,
and standing independently. This happens often in our den, while she is
playing. She will let go of the couch, or coffee table and just stand there.
This morning it was for nearly a minute while she ate some leftover pieces
of the mini-bagel I’d left for her on the coffee table. Other times she
of the mini-bagel I’d left for her on the coffee table. Other times she
stands in front of her toy shelf, with no support. Considering at one point,
not so very long ago that Rebecca would stand as long as you held her
hand – but the split second you let go or tried to get her to stand alone,
she lowered herself to the floor. Hopefully she will gain more and more
confidence and we will see her walking on her own in 2009.

Monday, December 22, 2008 10:13 AM, EST

Wishing everyone a very Merry Christmas
Rebecca is doing well and very ready for Christmas.
My prayers go out to all of my caringbridge friends, those who have won
many victories this year, those who are fighting hard, and especially those
who earned their angel wings this year. Thank you for sharing your life. I
pray that 2009 holds many good things for you and your family. May the
Lord be with you.

Wednesday, November 26, 2008 5:47 PM, EST

HAPPY THANKSGIVING
Yesterday was her MRI, all went well. The Gliomas are still gone! YIPPPIE
Reason to be very thankful this Thanksgiving. Apparently the ventricles still
look good, so this means that the shunt must be doing its job.
Today was a long day for Rebecca. Aside from some confusion at Duke
about getting from the main hospital over to Duke South (they got rid of
the rapid transit system folks! Totally messed with my plan). We managed
to make it to the EEG appointment not to late, or at least no one
complained.
Rebecca was very patient with the nice nurse, Grace, making all the marks
getting ready to hook up the electrodes. She started to loose her patience
as all the electrodes were attached, but there were a lot of them to get
hooked up, and it was a long time for David and I to keep her hands out of
trouble. Then she had about twenty minutes of monitoring, including some
photo stimulation (flashing the lights at her). The lights did NOT trigger
anything, which we knew, she loves bright flashy lights. She had a small
seizure event as she was getting hooked up, but nothing we could see
during the monitoring time.
After the EEG we went and had lunch. Some minor trauma as I tried to get
her through the turnstiles with the stroller – note to self – don’t try that
again!
We went for our Appt with Dr. Mikati, and I am very happy with my
decision to seek his opinions. First he took the most thorough history I
have EVER had a doctor take.
So the end results – what you’ve all waited for:
The EEG only showed activity on the right side of the brain, but of course
didn’t really show them all the data they needed
There are some neat MRI findings – basically if you look at the left side of
the MRI the differences between the gray matter and white matter are very
clear, on the Right side, not so much. This means that the right side of her
brain is under-developed. This could explain why she has such weakness on
the left.
He wants her to have a Video EEG to pinpoint all of her seizure activity.
There are really 3 options
Continue with meds – there are many other ones we can try. But she has
“Failed” so many, there is a slim chance a new one would work.
Immune therapy – this would be either a new round of ACTH, or IVIG
(Immuno-Globulin) Therapy. We could decide on this when she is admitted
for the Video EEG
The other option would be surgery. There are several choices for surgery,
the most common and the most effective is Function Hemispherectomy (I
think that was the right name). Basically they remove a large section of
the side of the brain causing the seizures. If needed they also disconnect
the two halves (Corpus Callostomy I think).
Putting in a VNS is another surgical option.
We can also go back to the Low Glycemic Diet. Or if we push hard enough
to get the right people on staff, start the Ketogenic Diet. But first Duke
has to have the Dietitians who are willing and able to help administer it.
Right now they don’t. However, they do now have a doctor who is trained
(Dr. Mikati).
Thanks for all your well wishes for her appointments!

Monday, November 24, 2008 1:25 PM, EST

well we have moved Rebecca into her Big Girl bed! We bought her a nice
bunk bed and David made some really nice railings for it. Now it is like she
has a Twin sized crib. This way she has a bed big enough for her, but is
still totally safe.
Wanted to let you know that we have a few important appointments this
week. Tomorrow she has a MRI. Then Wednesday she has an EEG before
we meet the new Neurologist (yes our appointment with the Neuro was
changed).
Please keep us in your thoughts and prayers for these appointments. Pray
that we get the kinds of results we need on the EEG, it is one of the few
times we need her to actually have seizures. We need the doctors to see
what has been going on.

Friday, November 14, 2008 9:04 AM, EST

Well Rebecca has missed school this week because of a cold. I took her to
the doctor yesterday because of a suspected ear infection. Sure enough,
she does have an ear infection. Poor thing is hurting so bad in her right
ear.
At least this morning she is finally getting some good sleep, her ear has
hurt her so badly she hasn’t slept the past two mornings.
Her seizures still seem to be doing okay (as good as okay is for her).
Developmentally we continue to see improvement. We see her using her
left hand a lot more, reaching for and attempting to manipulate toys.
please continue all your prayers – they are working!
We see the Neurologist on the 25th, Rebecca also has a MRI that day.
Please pray for the MRI to be clear. We also hope to talk to the
Neurologist about getting an EEG for Rebecca, so pray that we will be able
to arrange that without too much fuss.

Tuesday, November 4, 2008 11:46 AM, EST

Just had to come in and share what a wonderful accomplishment Rebecca
did today. She stood on her own (No support at all) for one whole minute! I
was able to get her to stand several times, but her longest time this
morning was 1 minute. I couldn’t convince her to take a step unsupported,
but standing unsupported is still a major accomplishment. She was doing
that some before all of her shunt surgeries (and even taking a couple
steps).
This means we appear to FINALLY be back to where she was before all of
this shunt stuff started. And with her new found energy, stamina and
determination (of a typical 3 year old), she should start skyrocketing!
I’d say our only problem is that she is doing some self-stimulation
behavior. She is making grunting/growling noises and waving/smacking her
right arm. She does this for hours on end (okay the better part of the day).
She drives David and I crazy with her noise sometimes – especially at night
when she won’t be quiet and go to bed. She doesn’t sleep like she should.
So if you could, please keep Rebecca in your prayers that we could meet
her sensory needs so that she could relax and not need to “self-stim” (a
common behavior among kids with Special needs – esp those with Sensory
issues aka Sensory Processing Disorder). And also pray that she could get
the sleep she needs – so that David and I can get the sleep we need!
God bless you all –

Thursday, October 30, 2008 12:32 PM, EDT

I just got this sweet little poem in an email forward
Sure, snopes calls, it “Glurge” Its one of those sappy little stories that
makes it way around the internet. But it is one that reminds us that if you
have lost a child, to have faith, and know that they are reunited with loved
ones, and sitting on God’s knee. I had one miscarriage, fairly early. I know
that little baby is back in heaven, right where God wants them.
And to all my carepage and caringbridge friends who have lost a child – you
are always in my prayers. *hugs*
are always in my prayers. *hugs*
********************************************
She jumped up as soon as she saw the surgeon come out of the operating
room. She said: ‘How is my little boy? Is he going to be all right? When
can I see him?’
The surgeon said, ‘I’m sorry. We did all we could, but your boy didn’t make
it.’
Sally said, ‘Why do little children get cancer? Doesn’t God care any more?
Where were you, God, when my son needed you?’
The surgeon asked, ‘Would you like some time alone with your son? One of
the nurses will be out in a few minutes, before he’s transported to the
university.’
Sally asked the nurse to stay with her while she said good bye to son. She
ran her fingers lovingly through his thick red curly hair. ‘Would you like a
lock of his hair?’ the nurse asked. Sally nodded yes. The nurse cut a lock of
the boy’s hair, put it in a plastic bag and handed it to Sally.
The mother said, ‘It was Jimmy’s idea to donate his body to the University
for Study. He said it might help somebody else. ‘I said no at first, but
Jimmy said, ‘ Mom , I won’t be using it after I die. Maybe it will help some
other little boy spend one more day with his Mom .’ She went on, ‘My
Jimmy had a heart of gold. Always thinking of someone else. Always
wanting to help others if he could.’
Sally walked out of Children’s Mercy Hospital for the last time, after
spending most of the last six months there. She put the bag with Jimmy’s
belongings on the seat beside her in thecar.
The drive home was difficult. It was even harder to enter the empty house.
She carried Jimmy’s belongings, and the plastic bag with the lock of his
hair to her son’s room.
She started placing the model cars and other personal things back in his
room exactly where hehad always kept them. She lay down across his bed
and, hugging his pillow, cried herself to sleep.
It was around midnight when Sally awoke. Lying beside her on the bed was
a folded letter. The letter said:
‘Dear Mom ,
I know you’re going to miss me; but don’t think that I will ever forget you,
or stop loving you, just ’cause I’m not around to say ‘I Love You’ . I will
always love you, Mom , even more with each day. Someday we will see
each other again. Until then, if you want to adopt a little boy so you won’t
be so lonely, that’s okay with me. He can have my room and old stuff to
play with. But, if you decide to get a girl instead, she probably wouldn’t
like the same things us boys do. You’ll have to buy her dolls and stuff girls
like, you know.
Don’t be sad thinking about me. This really is a neat place. Grandma and
Grandpa met me as soon as I got here and showed me around some, but it
will take a long time to see everything. The angels are so cool. I love to
watch them fly. And, you know what? Jesus doesn’t look like any of his
pictures. Yet, when I saw Him, I knew it was Him. Jesus himself took me
to see GOD! And guess what, Mom ? I got to sit on God’s knee and talk to
Him,like I was somebody important. That’s when I told Him that I wanted
to write you a letter, to tell you good bye and everything. But I already
knew that wasn’t allowed. Well, you know what Mom ? God handed me
some paper and His own personal pen to write you this letter I think
Gabriel is the name of the angel who is going to drop this letter off to you.
God said for me t o give you the answer to one of the questions you asked
Him ‘where was He when I needed him?’ ‘God said He was in the same
place with me, as when His son Jesus was on the cross. He was right
there, as He always is with all His children.
Oh, by the way, Mom , no one else can see what I’ve written except you.
To everyone else this is just a blank piece of paper. Isn’t that cool? I have
to give God His pen back now He needs it to write some more names in the
Book of Life. Tonight I get to sit at the table with Jesus for supper. I’m
sure the food will be great.
sure the food will be great.
Oh, I almost forgot to tell you. I don’t hurt anymore the cancer is all gone..
I’m glad because I couldn’t stand that pain anymore and God couldn’t
stand to see me hurt so much,either. That’s when He sent The Angel of
Mercy to come get me. The Angel said I was a Special Delivery! How about
that?
Signed with Love from God, Jesus & Me.

Tuesday, October 28, 2008 4:00 PM, EDT

Just wanted to update. We had some clinic appointments today. Turns out
we won’t see the Neurologist until November. But I wanted to update on
Rebecca’s growth spurt.
She is now 32 lbs (Holy Cow did my child grow!)
and 37 1/2 inches – probably even more, the woman doing the inches
measurement has always been notorious for getting it short, but not fully
extending her legs and stretching her out tall.
At first we tried doing her weight by having her stand on the scale holding
onto my fingertips. But the weight came up 28lbs. I looked at the NA, and
said, “NO WAY”, she has been 28lbs for Months, there is just no way she is
still 28lbs. So we zeroed the scale out, and sat her down. That time it
came to 32. I looked at that number and said, “Ahh, that is more like it!”
I’m willing to be her height is probably another 1/2 to 3/4 of an inch more
than they measured her at.
I coulda sworn the 3T pants I grabbed for her this morning were really
pants not capri, but when you put them on her, they were capri. Guess this
means we need 4T clothes this winter. haha
She continues to do great. Off the charts with her energy and enthusiasm.
She did have one atonic seizure the other day (complete loss of muscle
tone), and fell and bit her check as she fell. That was pretty traumatic for
her, and it took a long time to calm her down. The good news is though,
other times when she falls she is actually putting her arms out to protect
other times when she falls she is actually putting her arms out to protect
herself – this is new, and a huge improvement! Her clutzyness is seeming
to get a little better.
Thank you so much for all of your prayers – they mean so much to me.

Sunday, October 26, 2008 7:00 PM, EDT

Rebecca continues to do GREAT. She is doing well in school, and loves her
teachers.
She is doing fabulous in therapy and is making great strides. She has done
some really impressive things the past few days, including pushing up to
standing from her little theradapt chair, and then standing there with just
one hand on the arm of the chair. She even lets go briefly, and then grabs
back onto the chair and lowers herself back to sitting!
But today, I got the most precious gift, a smile. Because of her seizures
she doesn’t smile much. But today I got a real smile. It used to be she
only smiled during a seizure, but this wasn’t seizure related.
She was watching the kids/pre-school show “Imagination Movers” on
Disney Channel and she was really responding to it. The guys on the show
were signing a really cute song, which was all about making a song out of
fun noises (which is her favorite thing, funny mouth noises), and she really
really got into it. She was waving her arms, making her growling noises,
and intently watching. I’ve never seen her react that way. Then a short
time later she looked at me and grinned, a very happy, grin. I got so
excited I jumped up from my chair and ran to her in her wheelchair and
hugged her! Then after her nap (all that excitement wore her out), she
gave me another sweet grin when I went to get her. I was giggling and
teasing her when I went to pick her up, and she grinned at me, knowing I
was being silly!
I have been praying for her to smile for so long! I’ve been able to accept
the seizures, but have just prayed that she would be able to smile and
laugh! Thank you Lord!
Of course she also has so much energy. Right now its 7pm and she is still
full of energy and attacking my legs (wrestling me as we usually refer to
it). If you ever need a sparring partner, I’ve got a 3ft 30lb one for ya!

Wednesday, October 15, 2008 9:50 AM, EDT

I copied this from the Yahoo Childhood Epilepsy Group. (This petition only
applies to friends in the United States). Dear Friends, The Epilepsy
Foundation is trying to collect 100,000 signatures in support of a cure,
better care and an end to discrimination. Please sign right now at
http://www.epilepsypetition.com We want to show the new President, Congress
and your state legislature that the public supports our cause! We also want
to raise awareness. Since we launched this effort last week, we’ve
collected more than 1,000 signatures. But we need to collect 99,000 more
by our deadline of December 31, 2008. We need your help!!! Help us
spread the word!!! Please – post this on your Caringbride, or other blog
sites, or other groups you belong to. (even if you are outside of the US but
have many US friends) Lets get Epilepsy more funding so we can get our
children cured! Rebecca, David and I thank you very much.

Friday, October 10, 2008 1:57 PM, EDT

Just wanted to update because Rebecca had her first full week of Preschool
this week. She went Monday, Tuesday and Wednesday from 9 until 1. She
did GREAT and had a fabulous time. I stayed with her this week, so that
her teachers could get a better feel for her, and so that if she were to have
a seizure that I could alert her teachers since they don’t know what her
seizures look like. The good news is that she didn’t have any typical spells
while in school. Next week I will probably be a good mommy, and let my
daughter be on her own like a big girl with the other kids and the teachers.
I know she is in good hands (and frankly I look forward to some “Me”
time).
I can’t believe how much she has already come out of her shell. Now those
who know Rebecca – say “What shell?” Rebecca is such a friendly little girl.
But she is really engaging in her environment. She is watching the other
kids (well they are all boys, so I should say the boys – my daughter, the
flirt).
She has had so much energy. I can’t get over it. I feel so blessed.
Later this month we see Dr. Gallentine. Then in November Rebecca has
another MRI, and see’s Dr. G (the Dr. following her because of the previous
optic glioma), and Rebecca gets to see Dr. Mikati, the new chief of Peds
Neurology at Duke. He from Johns Hopkins, and has some new ideas about
Neurology at Duke. He from Johns Hopkins, and has some new ideas about
treatment for Rebecca. I am excited.
Please continue to keep Rebecca in your prayers – God has been faithful!

Thursday, October 2, 2008 10:43 AM, EDT

Wanted to update with how good – or I mean GREAT – Rebecca is doing.
I feel like she is staring in her own version of the movie Awakenings.
Someone (God) turned on her “On” switch. She is so suddenly full of life,
so awake, so interested in her world. So much “Our Becca”. She is
Babbling, making lots of noise. She is moving all around the den again.
Wrestling Daddy and I. She is playful. She is pulling to standing, and
standing at the couch. All of these things she wasn’t doing in the week
before we went to the beach. A few days after we got back from the beach,
the light inside her came on. Its been a miracle. Please pray with us that it
continues.
Her seizure activity seems to be in a relatively stable pattern. Ever since
Dr. Leigh had us add the clonazepam at night for about a week when we
see her getting into a bad pattern it has really been helpful. So as soon as
we something starting, I can add the extra dose of clonazepam at her late
night meds and it pretty much breaks the bad cycle. It is a wonderful little
safety net.
On some other news, my Grandmother recently passed away. Don’t feel
sad for me – she had suffered from Alzheimer’s for many years, and I am
glad she is no longer suffering. She is in heaven with my Grandfather
again. What is nice is this weekend we are having the memorial service.
My brother and his family will be coming from Arkansas. I haven’t seen
them since before Rebecca was born. Rebecca gets to meet Uncle Steven,
Aunt Karen and her cousins for the first time! There will be many other
family members traveling to Raleigh. Please pray for everyone’s safe travel,
and that Rebecca has a good weekend, so she can enjoy the time with her
family.
*on a sad note the baby I had requested prayers for in my last journal was
called home to Jesus – feel free to go back to my previous Journal to find
the link to Gracie’s site again. *
Thank you to everyone who prays for Rebecca, you all mean so much to
me!

Thursday, September 25, 2008 7:10 PM, EDT

Rebecca continues to do well. We had a nice mini Vacation last week, at
Carolina Beach. Rebecca actually liked the sand and ocean this time. She
was so cute with the help of myself, or Daddy standing in the surf, letting
the waves crash on her. I think she really liked the feeling of the water,
and how the sand pulled away under her toes. Of course she tried to eat
some of the sand when I showed the sand to her. YUCK! Becca and I have
both had a nasty cold (I think quite a few people have had the one going
around). It has been a tough one to kick. Another happy note is I think
Rebecca is now totally done with bottles, and only takes a sippy cup (or
one with a straw). This has been a really long process! She has also
started getting really vocal again – perhaps some of the old Becca is
reappearing, the one we had before her shunt surgeries. I have a request
for folks – there is a little baby, whose caringbridge site I have been
following. She is VERY sick, and is in need of our prayers. This is her site
http://www.caringbridge.org/visit/graciejeanlockyer Please pray for Gracie.

Thursday, August 28, 2008 7:00 PM, EDT

I meant to update earlier this week – but time slips away.
So Rebecca has started Preschool. She will be going on Monday’s from 9:30
– 11 for a while, just to get her used to things.
Mondays she has 4 classmates – all boys. And don’t you know they all fell
in love with her. It was the cutest thing I’ve ever seen. I stayed with her,
and will stay until she is all settled in. I’m doing this more for the staff
than anything. Everyone is pretty anxious about her seizures.
We are weaning her off the Depakote (one of her seizure medications). It
wasn’t working for her – to control her seizures, and it was having bad side
effects for her. We are still in the weaning stages and already there is
effects for her. We are still in the weaning stages and already there is
marked improvement. She is more alert and more vocal since she started
on this drug. We haven’t seen our little girl like this in a long time (this is
a good improvement).

Monday, July 21, 2008 3:19 PM, EDT

The latest CT scan looks GREAT! Oh my goodness, I couldn’t believe the
difference.
Rebecca got the stitches out today. She was such a good little girl.
She is doing so good today, active and playing.

Monday, July 14, 2008 6:22 PM, EDT

Rebecca has been doing pretty good recovering. Take a look back to April,
and you will see we did not have a good time at all with the initial shunt
placement. This time is so different. (I blame it all on the anesthesia
people because she wasn’t waking up right the first time – but this time
with our hounding about her response to the anesthesia she was awake
the night of the surgery).
Yesterday and today she has been playing, pulling up to standing and even
waking with two handhold assistance (look at the main picture up to the
left – that is what she was doing there). And even better is her appetite is
back.
We’ve seen a few clusters of seizures each day, which is always sad and
depressing, but we are oh so glad she is bouncing back fast.
Lets pray that these seizures are still a part of her brain and body
recovering from the surgery and that this time around the shunt really will
help stop her seizures.
We go to the Neurologist on Thursday, just a regular appointment. Then
Monday is our big follow up CT scan, and Becca gets the stitches out (Dr.
Fuchs had to do sutures this time on the scalp incision – the belly incision
still has the dissolvable kind)
Thank you so much for all your prayers and your support!
(and yes Jason – I really do hope to see you this weekend. Its been ages
since I’ve seen you! and I know Becca would love to meet you).

Friday, July 11, 2008 6:58 PM, EDT

Oh how wonderfully fun our life has been since Wednesday afternoon –
NOT!!!!
So we get back from the bloodwork and CT scan. I’m just finishing up
dinner, and Dr. Leigh (the neurologist) calls and said the CT scan looks bad
and shows a shunt malfunction – we need to go directly to the ER and
neurosurgery will come see here there. We know how painfully stressful the
the ER is, so we balked at that idea without knowing that a neurosurgeon
(hereby typed as NS) having viewed the scan, to confirm. (there was a
previous time she said the scan looked bad, but NS said it was fine).
So after NS called and said, yes it appears there is a shunt malfunction,
you should come in, David and I rapidly gathered what we needed for a few
days stay at the hospital.
So we get to the ER, and find out there are NO rooms upstairs in the
children’s hospital. So we have to spend the night (and half of the next
day), in the ER waiting. the next morning even when we see Dr. Fuchs –
the NS on call that day (Dr. Grant was off), he said he didn’t have any OR
time, so we were at the mercy of the OR to even get a slot to perform the
surgery.
It was around 3:30 or so on Thursday when someone finally came to get us
for Rebecca to go up for surgery. Poor baby hadn’t had anything to eat or
drink since 6:30 the night before. She had gotten an IV started earlier – so
she wasn’t dehydrated, but she was CRANKY about no food or drink.
So the surgery started around 4. At 5:30 we were told that Dr. Fuchs was
finishing up and to go into the little room and he’d talk to us in a minute.
(The little room isn’t an indicator of a problem – most doctors talk to the
parents in their after surgery, since it is more private).
so here is where you jaw falls down
Dr. Fuchs said the source of the blockage was a blood clot in the shunt!
(Feel free to curse, yell, scream, cry, whatever floats your boat – me I sat
there with my jaw on the floor). There was big clot at the top – therefore
the shunt couldn’t work – it was blocked. Then down a big portion of the
top of the shunt tubing they found blood (clotted in a little snake like line
all down the line).
He tested the rest of the line, and it “tested” fine (as if no blockage), but
he said since he found blood in higher parts of the line, he thought it
would be better to replace the whole thing.
So we hung out in recovery for a while, STILL waiting on a room. At 8:30pm
a room was finally ready for us up in the 5300 of Duke.
The great news is she was already awake, and alert. Groggy of course from
the surgery, but sooo much better than the initial shunt placement. In the
morning (friday) she had some breakfast, and gobbled it up. She still didn’t
eat much – but considering the past 24 hrs for it, it wasn’t unreasonable.
But by lunchtime her normal appetite was back.
We were finally discharged at 5:30, and came home. Time to collapse.

Tuesday, July 8, 2008 4:04 PM, EDT

well tomorrow we go to the Dr to get some bloodwork done, to check all of
her medication levels. They have also ordered a CT scan, to make sure that
the shunt is functioning properly.
We still have our appt on the 17th with Dr. Leigh. But they have bumped
up our appt with Dr. Grant (the Neurosurgeon who put in the shunt) from
the 29th, to the 17th. So we will see both of them that day.
Please, pray that her blood work shows us something!

Tuesday, July 8, 2008 10:59 AM, EDT

Poor Rebecca has been having a hard time lately. She has been sleeping
way too much (the better part of the day – she is only awake a handful of
hours each day). On top of that its a struggle to get her to eat. Those of
you who do know Rebecca know that she LOVES to eat – so this is not like
her at all. This morning for breakfast I managed to get her to eat about
half of a thing of oatmeal. And even that was a struggle.
I’m still waiting on the Neurologist to call me back. Rebecca’s therapists
are also troubled because we have noticed she is regressing in her skills.
For instance – where as we were working on walking, we are now working
on sitting. She can’t even maintain a sitting position without looking like a
on sitting. She can’t even maintain a sitting position without looking like a
weeble wobble. Obviously something is seriously wrong. Her therapists
have offered to send their notes from the therapy sessions to the
Neurologist to help the Dr. get a better idea of what they see going on.
Please pray for Rebecca that we can solve this. Its been heartbreaking
enough seeing her struggle with head drops daily (that is the type of
seizure she has). Its been hard enough with her having significant delays.
But now she is facing serious lethargy, and appetite loss, and loosing skills
on top of everything else. Its scaring David and I very badly.

Thursday, June 26, 2008 10:06 AM, EDT

I can’t believe my baby is 3, and in a few weeks will be starting pre-school.
Time sure flies.
We had a nice small birthday party for Rebecca.
What is really special is a couple of days ago I got together with Kathleen,
and her daughter (Rebecca Grace). The two girls are only 5 weeks apart.
We usually refer to them by first and middle names, since they are both
named Rebecca. anyhow – while the two girls were sitting on the floor they
just kept giving each other hugs. It had been a long time since we’d gotten
together, and it was so sweet to see them being so affectionate with each
other. I’d never seen my little Rebecca be so affectionate with another
child. She really kept putting her arms around Rebecca Grace’s neck and
pulling her in close. And of course Rebecca Grace is such a big helper,
making sure Rebecca Kaylene has her sippy cup and paci nearby – and even
bringing her toys.
It isn’t quite the picture I had in my mind of how our little girls would play
together as they got older. God had a different plan for my Rebecca – but
the picture has turned out to be oh so Beautiful.

Thursday, May 8, 2008 7:15 PM, EDT

Just wanted to update everyone and let you all know that Becca is pretty
much back to normal. As normal as she can get 🙂
Some good news is that I am seeing a few small things here and there
Some good news is that I am seeing a few small things here and there
that show some real improvement overall. There seems to be some new
confidence and desire to walk. Of course that has sadly been diminished by
seizures causing her to fall each time she has tried. But she is trying more,
and has more confidence to try that she never had before.
We are still seeing more use of both hands. Her receptive language also
seems to be improving.
Actually her overall awareness of her environment has drastically improved.
Its amazing.
She is still a little weak from all that has gone on, but that will improve. I
can’t wait to see what is in store for her as she gets her strength back.
We take her to the Neurologist later this month (for her seizures). David
and I are wondering if we should seek a new Neurologist – actually one of
the last times we saw her she actually said to us “If you want a 2nd
opinion I’d be happy to help you find someone”. If we are going to go that
route, please pray that we are able to find a doctor that can treat
Rebecca’s very difficult to control seizures.

Tuesday, April 29, 2008 11:56 AM, EDT

Things are starting to improve a little bit. Rebecca is finally starting to
have a little bit more energy. Today was our post-surgical follow up. The
doctor thinks part of the reason she has had such a hard time is that in
addition to all of her seizures making life harder for her, is that she was
already having a generally harder time before surgery (really low energy).
So when you are starting out at less than 100% going into surgery, its
even harder to get back to 100% after surgery.
Today was one of the first times she ate a normal meal after surgery.
We’ve temporarily put the special diet on hold, just because we knew that
getting her to eat would be kind of hard and we wanted to just focus on
getting her to eat. So if that meant giving her goldfish or other fairly
typical toddler snack foods, but forbidden foods on her special diet, then so
be it. Actually one of her favorite snacks are those little gummy fruit
snacks. She LOVES those (not gummy worms, the ones with real fruit
juice).
Thank you for all your continued prayers and support. They mean so much
Thank you for all your continued prayers and support. They mean so much
to David, Rebecca and I. Continue to pray that she gains her strength back
quickly. Please also pray that we are all able to recover from the emotional
stress of all of this. I think its finally taking a toll on us. I know David and
I are exhausted lately, and it must be due to the stress.

Monday, April 21, 2008 4:25 PM, EDT

We came home yesterday around lunchtime. things have gone pretty
smoothly at home.
Rebecca is still sleepy, but doing so much better, day by day.
It’s been cute watching her try to sit up (and even pull to standing at the
couch- very briefly). It really takes a lot of work for her, and wears her out
quickly.
I think I am seeing a few subtle things that are an improvement of how
she was before the surgery. Little things like the use of her left hand.
thank you everyone for all your prayers (and thanks to Judy for spreading
the word on Gunner’s page – that was so sweet!).

Sunday, April 20, 2008 7:52 AM, EDT

Saturday went much better.
I’d actually typed out an update – but was almost done typing when
Rebecca had a minor head drop while sitting in the crib facing Daddy and
bonked her forehead on the rail of the hospital crib. I set the computer
down to check on her, and by the time I picked up the laptop and finished
typing my session timed out. DOH!
Anyhow, she was much more herself yesterday and we will be going home
today – the sooner the better. Both Daddy and I got some snuggle time
yesterday.
She is still going to be sore for a bit, but hopefully once we get her home,
She is still going to be sore for a bit, but hopefully once we get her home,
where she can move around a little more in a safer environment with more
space to move it will help. The living room floor is a lot safer than the
small hospital crib. I know after spending so much time sleeping on her
right side, its made her extra sore. I’ve helped her slowly and purposefully
turn towards the other side, just so she can be on her left.
Please pray things continue to improve from here.
– at this moment we are waiting on the doctor, silly neurosurgeon came at
something like 7am yesterday (it might have even been earlier. and of
course it woke me up as I was trying to go back to sleep. Today, i am wide
awake – and where is he????

Friday, April 18, 2008 10:36 PM, EDT

Surgery is over (well long over now).
the surgery itself went fine. The shunt is in.
However after surgery Rebecca has not really wanted to wake up, and has
had an increase in seizure activity. Most notably the not waking up has
been of concern.
the doctors did a CT scan to make sure there was no blood in her
brain/skull, which came back fine. PHEW!!
And right when we got back from CT the phlebotomist person was here to
draw the blood. That woke Rebecca up. I kept having to tell the woman
doing the stick DON’T worry about waking her up, since she was trying not
to wake her up (thinking it was just a sleeping child). I said, we WANT her
to wake up, we’ve been unable to get her to wake up. But the needle stick
did the trick (okay it wasn’t the intent, but hey, it worked).
She woke up and was able to have some juice (in an effort to get her to
not eat the oxygen sensor taped to her thumb). when her medicines came
later we did have to spend several minutes working to wake her up. But
she often does that when I bring her late night dose of meds – I have a
feeling getting her up as a teenager is going to be a nightmare. She must
have inherited that from Uncle Rick (hahaha).
Please pray that tomorrow goes better for her, and that she is able to
tolerate being held by Mommy or Daddy. I know we badly want to hug our
baby girl. But right now it hurts her too much to try to pick her up. Her
head is just too sore.
head is just too sore.

Thursday, April 17, 2008 3:51 PM, EDT

I just wanted to take a moment to update everyone who doesn’t know that
Rebecca’s most recent MRI showed signs of Hydrocephalus. 😦
Actually we found out today when we met with the neurosurgeon that her
previous scans had showed some signs of enlarged ventricles, but each one
was insignificant. But as you looked at a series of scans – especially at the
most recent one it is pretty alarming. This news, combined with her being
pretty lethargic recently prompted the doctors to decide that she needed
surgery to put in a shunt now, rather than later. A shunt is really the only
treatment available for hydrocephalus.
Although this website doesn’t have a whole lot of information, it probably
can answer most of your questions
http://www.hydrocephalus.org/facts.htm
The doctors are not sure exactly what type of hydrocephalus she has. They
don’t believe there is anything blocking the pathways between the
ventricles preventing the fluid from being flowing like it should.
Hopefully we will just be in the hospital overnight. But I think anyone who
has ever been in the hospital knows how that can go. Dr. Leigh may come
in and decide “Well while you are here, lets go ahead and get some
additional Video EEG monitoring done” or something crazy like that. So I
am going to pack for a multi-day stay. (Yeah I don’t trust the hospital one
bit!).
As Rebecca has gotten older, please pray also that we are able to keep her
entertained in the hospital room. Somehow I don’t think she will be as
content sitting in the bed all day. And since she doesn’t walk on her own
we can’t just let her crawl around on the floor (or attack all the very
“interesting” stuff in the room) Containment will be an issue, I can see it
already.

Saturday, March 8, 2008 4:48 PM, EST

Well we are officially starting on a special diet for Rebecca’s seizures. Its a
Modified Ketogenic Diet. This diet is a Low Glycemic Index Diet.
http://www.epilepsy.com/epilepsy/keto_news_may07
Basically, if you have heard of the south beach diet, then you are familiar
with some of the same principles that this is following. Its good carb/bad
carb. It is going to be limiting her carbohydrates for the day. And the types
of Carbohydrates she gets for the day (they will have to have a glycemic
index of less than 50).
I’ve got lots of research still to do, learning about foods – but it will be
worth it. So far things have gone well. Today I finally made it to Barnes
and Nobel and got the books the Dietitian recommended, so at least when
meal time comes I don’t have to pull open the lap top to figure out
appropriate foods. Granted next week the dietitian should be providing me
with several meal plan ideas for Rebecca, based on foods we talked about
and Rebecca’s height and weight (ideal calories, fat content etc). That
should make life a little easier for me. Of course I still have a lot of
freedom to plan meals as I choose.
The reason we are doing this diet, and not a traditional Ketogenic diet is
that there are no dietitians at Duke who are trained in the Ketogenic Diet.
We would have to travel to either Charlotte (closest hospital for treatment)
or even John’s Hopkins (where the main center for the diet is located).
Since the full Ketogenic diet requires a lot of commitment and has a few
drawbacks that neither her neurologist nor I are ready to face, we felt one
of the alternative diets for treatment of epilepsy was best. Some hospitals
use a Modified Atkins for Epilepsy. Duke uses the Low Glycemic Index Diet.
Please keep us in mind as we transition into this new phase of eating –
well Becca’s new phase of eating, mommy’s new phase of food prep for
Becca. Somehow this just isn’t as easy as giving her a pile of cheerios and
a can of peaches. DARN! I am gonna miss those days. But hopefully once I
get the hang of this I can have meals ready and prep time minimized.
Oh – other happy day news!! We have rescheduled OT, its gonna now be on
Thursday afternoons. This means that Mommy and Becca now have
Tuesday and Wednesdays free. I can’t even remember the last time we had
TWO WHOLE DAYS free in our week. It had to be before we added OT.
Good grief! I am so excited. And just in time for spring. WOOOHOOO!!!!

Sunday, February 24, 2008 3:00 PM, EST
Sunday, February 24, 2008 3:00 PM, EST

Things continue to go pretty well for Becca. Right now she is a little sick
(who isn’t in this horrible flu season!). But she is managing it well. Thank
goodness we are done with Chemo, otherwise this could have been pretty
scary, since we didn’t actually come in contact with anyone who has the flu
(although I got sick first).
No new milestones to report. But like all 2 year olds she continues to see
what kind of mischief she can get into. Constantly testing her boundaries.
Through my network of mommy friends I have been following the story of a
precious little baby, Paxton who has a seizure disorder much more serious
than the one Rebecca has. If all of Rebecca’s friends and family could
please pray for little Sweet Paxton, I know her family would appreciate it.
Here is her caringbridge site, so you can see what is going on there
http://www.caringbridge.org/visit/paxton

Wednesday, January 30, 2008 5:06 PM, EST

Things are going well for Becca. She is playing so much, and getting so
much more verbal. She is trying to repeat words, and doing so much better
at making requests in her environment (such as momma, dadda, baba/
bottle, signing for “eat”). This past weekend Rebecca and I went to visit
my best friend, Jennifer – ‘Aunt Jenn’ to Rebecca. Becca had soo much fun.
She got to play with Jenn’s two goats. Did I mention Jenn lives in the NC
mountains? Becca also got to ride a horse again. We went to Winterfest in
downtown Blowing Rock. Becca got her face painted with a sunshine. It
was such a fun experience.
Tuesday was our first port flush after Chemo is done. Basically once a
month Becca goes to get her port flushed to keep it in good working order.
She keeps her port in for a year so that it can be used for the sedation
meds for her MRI, or anything else that might come up (ie better safe than
sorry).
For anyone who would like to look, here is our Kodak Gallery with Rebecca’s
recent trip
recent trip
http://www.kodakgallery.com/I.jsp?c=56w6mgz.9o2lj49j&x=0&y=gq9ry5
(although the link to Rebecca’s gallery is also in our links section here, so
feel free to browse her other pictures!)
Becca loves you.

Tuesday, January 8, 2008 3:10 PM, EST

We just got back from the CHC, and we have some BIG news.
Dr. G reviewed her scans, all clear, all good. You can not even measure the
optic glioma(s) anymore, and the enhancement is totally gone. He had
discussed initially going between 12 and 18 months of treatment as long
as Rebecca tolerated them. Her platelets have begun to dip a little after
each chemo, not enough to require a transfusion but enough that it could
be problematic if Chemo continues. So – today was Rebecca’s very last
chemo!
WOOHOOO!!!
I guess going in this morning we knew there was an outside chance that
Dr. G could say “Things look great, we don’t need to continue”, but to
actually hear those words were shocking.
Rebecca will still keep the port in for the next year, and will still need to
have it accessed monthly, to flush the line. But other than that we will be
done with the Day Hospital. I am in shock.
Not that Rebecca is done with al of her other appointments. She will still
have her regular Neurology appointments. But with Chemo ending, it does
open the door for us to try alternative treatments for her epilepsy.

Friday, December 28, 2007 1:47 PM, EST

Rebecca had a very Merry Christmas.
It was the first holiday she has had that she was not overly sleepy or did
not have so many seizures that cast a shadow on the day. She had so
much fun exploring all of her toys as she opened them. Of course the
wrapping paper is still as much of a toy as the item inside the box. It has
not been until today that we are seeing the After Christmas crash, where
she is more tired and having a few more seizures. But both David and I
knew it was coming. We just feel blessed she could enjoy Christmas eve
and Christmas day.
After the first of the year Rebecca has another MRI, just a routine MRI, but
it is something to pray we get good results for. We also have several clinic
appointments in January. The Eye Dr, the neurologist, and of course her
regular Chemotherapy appointments. Please pray these all go well.

Sunday, December 23, 2007 6:38 PM, CST

Merry Christmas to all!
I will update again once Santa comes to visit Rebecca, but I just had to
stop and wish everyone a Merry Christmas and I hope everyone has a safe
holiday.

Wednesday, December 12, 2007 10:10 AM, EST

I added a picture of Becca in her helmet.
Basically we needed the helmet to protect her as she is playing and
moving around in case she has one of her seizures. Even though the
seizures she has are not what most people think of when they hear the
word seizure, she still hits her head pretty hard as she falls.
The helmet is a little big, which gives us room to grow into it, but we also
still need to tweak it a bit so it fits her properly for the here and now.

Monday, December 10, 2007 4:11 PM, EST

We have our first helmet for Rebecca!
today is day one with the helmet. so far so good. She even just took a
little tumble backwards. Not a seizure, but just an uncoordinated fall
backwards. But she conked her head hard – except for the fact she had her
helmet on. So it didn’t even phase her. How wonderful.
This past weekend poor baby was battling a touch of the stomach bug.
Early Thursday am, I was awakened to her crying. I went in to see what
was wrong, and discovered she had vomited. YUCK. Not the kind of
surprise you want to find at 4am. I woke David up and we cleaned her up,
and changed the sheets. She was fine all day, we went slow on the food
and drinks. then again Saturday morning, she got sick. Several times
Saturday. So we tried Saturday to get something into her, to keep her
hydrated. Sunday we just spent the day giving her an ounce or two every
half hour. Poor baby.
Tomorrow is another Chemo.
Wednesday we have a Speech Evaluation with the folks from Early
Intervention. This will qualify her for Speech Therapy services.

Sunday, November 25, 2007 12:26 PM, CST

Thanksgiving was good. Rebecca ate sooo much food. Thursday we went to
Raleigh and spent the day with Grandma and PopPop and she ate some
Turkey and all the trimmings, including a Becca sized slice of Pumpkin Pie.
I can’t believe she ate so much. Everyone loved seeing her. Then Friday it
was off to Thomasville and Kernersville to see Granny for Lunch, and then
Grandpa and Kathy for dessert later. Again, for the 2nd day in a row
Rebecca ate a lot of food. Friday she had some more Turkey, and fixings.
For her deserts, she ate some Banana pudding. YUMMY. The Grandparents
couldn’t get enough of her. Although everyone certainly got a taste of daily
life with her. The little girl who doesn’t walk – but never sits still! All Daddy
and Mommy kept hearing was “Wow, she sure is an active little girl”. haha!
Please pray that she can put all that energy to good use and start walking
on her own.
On a good note – we should be getting her the helmet soon. We are
expecting it to get ordered on Monday. I am very Thankful that this has
finally come through for her.
One year ago we started the Chemo. Thank you everyone for all your
prayers for the past year (and before, for the epilepsy). Your prayer has
meant so much to me.

Wednesday, October 31, 2007 7:50 PM, CDT

Wow – today’s appointment with Dr. Leigh took a long time. Not only did
we not get back to see her until an hour and a half after our appointment
time, but it took a long time once we got there.
Basically Dr. Leigh is concerned that Rebecca is now having what are
known as Drop Seizures (Atonic Seizures for those who know the technical
term). This means she is now having 2 seizure types. What this also
means is instead of having Infantile Spasms, she is progressing into
having Lennox-Gastaut Syndrome. This is more or less a progression of
Infantile Spasms, marked by having multiple seizure types. We are going
to wean her off of the Phenobarbital (at Mom’s insistence), and she will be
started on a medication called Lamictal.
Something we will need to do more research on, to consider after she is
finished with her chemotherapy is called a VNS, or Vagal Nerve Stimulator.
http://www.vnstherapy.com/epilepsy/patient/About_Basics.asp
This of course is something David and I need to do a lot more research on,
but I know it is something that has helped a lot of people with drug
resistant epilepsy, which is what Rebecca has. Infantile Spasms, and
Lennox-Gastaut Syndrome (LGS) are both Drug Resistant Epilepsies.
We took her to a few houses for trick or treating, but after such a long day
she was really just ready to get in the bed. It doesn’t matter too much, we
had so few kids come to our house that we have ample candy left over.
Plus she got a few treats at the Children’s Health Center. There was even
one nice Mother, Grandmother and cute little girl that had brought bags of
goodies and let Rebecca pick out something. We got some Play-dough!
That should be some fun sensory and Tactile stuff to play with – but we
That should be some fun sensory and Tactile stuff to play with – but we
have to learn not to eat it. Rebecca also ate her very first lollypop!
hopefully I will post the pictures tomorrow! At least She wore her costume
to the clinic today!

Tuesday, October 16, 2007 6:16 PM, CDT

I just had to post how big she is getting
Our little girl is
34 1/2 ” long
25.6 lbs
And we just got her new shoes – she is in a size 7.5 (toddler shoes).
She is a long skinny kid.
It seems like the last time she got Chemo she had just jumped to 33
inches, and this month she shot up another inch! She really is a growing
girl!
She is dong okay tonight after Chemo. Really sleepy, but okay. poor kid
didn’t take a nap today. I guess she couldn’t get comfy to take a nap while
she was in clinic. Poor baby. We got home and put her in the crib and she
went right to sleep.

Friday, October 12, 2007 12:14 PM, CDT

Fall is here!
Of course this means it is also the time of year Rebecca is getting lots of
little colds. It seems like she just got past the last little bit of the stuffy
sniffles and the next one has started. And because she is so young, all we
can really do is use lots of saline and keep using the “mean” bulb nose
suction thing (or as I call it “snot sucker”). Thankfully she hasn’t gotten
any fever with this. I am trying to make sure she is getting lots of extra
naps and rest so we can keep this little bug at bay.
naps and rest so we can keep this little bug at bay.
Chemo again on Tuesday (the 16th). As she gets older it is getting more
difficult – just trying to keep a wiggly toddler entertained for so long. It
isn’t like we can just let her get down on the floor and play. And even if we
tried to set her up a nice comfy spot on the chair she would try and climb
out.

Thursday, October 4, 2007 9:53 AM, CDT

Rebecca is doing well. I know I don’t update much, but most days are
pretty much the same as the last for us.
Right now we are trying really hard to get her a helmet for her seizures.
The hold up is of course in the red tape. We are blessed that since she is
young and still has services from Early Intervention that there is funding
from Early Intervention to pick up where Insurance leaves off. This is good,
becuase Insurance denied her the helmet because they said something
about it being “Environmental” (I wasn’t on the call, it was between the
vendor and the insurance company). I’d like to know what the insurance
company expects us to do? Pad the walls and floor with foam? would they
pay for that since they won’t pay for hte helmet? (note the very thick
sarcasm).
Similarly we are still trying to get her a bath chair, a special seat to fit in
the bath tub for kids with special needs. Kind of like a lawn chair. There
are all kinds of attachments you could buy for kids with more physical
involvement, but mainly we need one with the seatbelt so when Becca has
a seizure in the bathtub she won’t instantly go under the water. The first
vendor we were trying to use wasn’t working out, so we switched.
Fall is here! YEAH! I am so glad.

Friday, September 7, 2007 6:14 PM, CDT

Rebecca has been doing well the past couple of weeks. The day after her
big fall, she was totally fine.
I find myself laughing a bit that she is so significantly developmentally
I find myself laughing a bit that she is so significantly developmentally
delayed, yet somehow she still hit the terrible 2s right on target! How does
one manage that?
I think we are getting even closer to her walking by herself. On labor day I
took her to see Pop Pop and Grandma Jacky. She loved holding onto
someones hand (mostly just a finger) and walking all over thier house. It
was so cute. She even walked down the front sidewalk, just holding onto
my hand. This week David and I have seen her let go of things more and
more, and just stand there for a few moments, and taking a few more
independent steps. so far the most she has ever taken have been 3 full
steps by herself. I just know she is waiting until no one is looking. That is
just how she has hit all of her other major milestones. I guess she has to
practice first.
If my friends and family could please pray for my patience with her. I’ve
found that the more she exhibits the 2 year old terrors, the more frustrated
I am getting. Also, I think I am just run down buy all of this seizures,
physical & occupational therapies, and medical stuff. I know other parents
of kids with special needs (medical and/or developemental) know exactly
how I feel. Some days are just hard.
Keep on praying for Rebecca. We want those seizures to stop! It is very
hard for little girls to learn to walk when they might have a head
drop/seizure and fall down and bump their head. owwie.

Tuesday, August 21, 2007 7:14 PM, CDT

So today was another one of our long days at Duke. Normally in the day hospital we are just
in one of the chairs, and David and I have to take turns being back there with Rebecca (only
one adult allowed back there with a child, unless you are in a room). Well after a while the
nurse said they had a room open, and if we wanted to use it, we could. This is a RARE event,
so I took it. After a while David gets back. I was talking to the woman who used to
coordinate the study for seizure medications Rebecca was in (before she started on Chemo).
I called her and told her to stop by and say hi, and see Rebecca. I seriously thought David
had Rebecca. But she was quicker than he was. Well, all too fast, our poor baby fell off the
bed. She landed on the base of the IV pole (can we say, mega major OUCH). Of course
several nurses came in, and her nurse practicioner came in and did a thorough check to make
sure nothing was broken.
Our poor baby!
She screamed for a good while, and then calmed down and fell asleep.
She screamed for a good while, and then calmed down and fell asleep.
She isn’t even any worse for the wear after we got home. She is still just as rambuntious and
wild as usual. She has a few bumps, but nothing more than the average two year old has.
And she has been proving herself quite normal in that area lately!
BTW – the MRI shows things as stable. I guess that is better than things growing, but not as
good as shrinking. All of my prayer warriors, please pray the tumors start shinking again.

Saturday, August 11, 2007 10:27 AM, EDT

Things are still going well. Not much in the way of changes or progress.
She is babbling quite a bit and you can hear more and more words starting
to emerge.
She had her MRI the other week. We should know some results either this
Tuesday or next Tuesday, since we have visits over at Duke those days.
Rebecca did have her 2 year “Well Baby” pediatrician visit this week.
Things look good. Rebecca is in the 12% for height and 20% for weight. So
we will continue to give her pediasure when she isn’t eating enough.
We will go back to the opthomolgist in September. The doctor will reevaluate
Rebecca’s Stabismus and Amblyopia. We haven’t been able to
continue patching – Rebecca just pulls the patch right off.
Please continue to pray for her seizures to end. As she is getting more
mobile, and spending lots of time standing, and cruising, her head drops
are becimming a little problematic. Our poor baby keeps hitting her head
on things. Or the head drop throws her off balance and she falls down.

Saturday, June 9, 2007 7:24 PM, EDT

We got a chance to talk to Dr. G about her more recent MRI lately. It
showed the optic gliomas are still showing improvement. He measured on
one side and it was originally 12mm and it is now 7mm. The enhancement
is now almost gone.
We are still struggling with her seizures. We recently added Klonopin. We
also increased the dose of her Phenobarbital. Hopefully this will get things
under more control so she can have more developmental improvements.
under more control so she can have more developmental improvements.
Still no independent walking. It almost seems as if she is scared. Anytime
you try to get her to stand by herself, the moment you let go she either
reaches for the nearest object (ie couch) or sits down. The good news is
she doesn’t fall down anymore, she has a controlled sit and protective
extention reach with her arms.
We are also seeing a lot of improvement with her interaction with toys.
She is much more interested in her environment, exploring toys and playing
with things.
I can’t believe my baby is almost two. Just a week and a day until her
birthday. Prayer requests would be that she is able to enjoy her birthday
this year. She had so many seizures during her first birthday it really put a
damper on the day’s festivities.
Thank you friends and family for your support!

Thursday, April 19, 2007 9:37 AM, CDT

Things are still going well for Rebecca. No indepent steps yet – but
hopefully soon. She is getting more confident of her own crusing along
furniture, and sitting down though. Strange to think a few months ago we
couldn’t convince this child to bend her knees to sit down (she just went
straight legged back over).
Our little girl is almost 2 years old! Time flies. She has been having a few
seizure clusters again. Please pray that these get under control again
quickly.
Her next Chemo will be on May 1st.

Wednesday, February 28, 2007 7:50 AM, CST

Rebecca had her MRI yesterday and things went GREAT! We got news that
the Chemotherapy does appear to be working. Her tumors look like they
have shrunk and the enhancement is gone. There was something about the
images from the MRI not being done the exact same way as her previous
images from the MRI not being done the exact same way as her previous
MRI, so the Doctor didn’t have identical images to compare. Something like
one was a 4mm slice and the other was a 5mm slice. The doctor also said
that these tumors can shrink on thier own – but he would like to think it is
the Chemo. David and I would also like to think it is the Chemo as well,
that we are not putting her through this for nothing. She will have another
MRI in 3 months. Please continue to pray that by this time the tumors are
gone!

Friday, February 16, 2007 9:58 AM, CST

Things continue to go well for Rebecca. We’ve had a small personall hurdle
of sleeping issues, but alas I think she is finally doing better at night
again.
Rebecca’s next Chemo is set for Feburary 27th. That is also the day of her
first MRI after the Chemo has begun. This will tell us if we are going to
continue on the Chemotherapy or not (or at least change the drug). If the
tumor has grown her course of therapy will have to change. As long as it is
stable, we will continue. Please pray that the tumor already shows signs of
shrinkage. Also pray that we get through the day. We will arrive at Duke at
8:15 for her bloodwork, then she goes for her MRI at 9. She has a Dr’s
appointment with the neruosurgeon at 11:45, and then when done with
that she will get her chemo (which will take 3 hours).

Friday, January 26, 2007 9:31 AM, CST

Rebecca’s Chemotherapy has continued to go well. Tuesday January 30th is
her next dose. Chemo days prove to be very long days at Duke. We are
very blessed to have dinner provided to us those nights. It is so wonderful
to come home and not have to worry about fixing dinner after spending all
day in clinic.
Rebecca’s antibiotic has been changed from something we give her 3 days
a week to something she gets once a month, the week before chemo. The
previous antibiotic was causing her blood counts to get all messed up. The
antibiotic is to help prevent her from catching anything since her iminuty is
low.
We went to the eye doctor recently. Because the left eye has such poor
vision and is “lazy”, we are now patching the right eye for two hours a day,
every day. This will force her to use the left eye more and make it get
stronger. She isn’t happy about it, but is tolerating it.
Developmentaly she is doing great. she loves to pull up to standing on
anything she can get her hands on. She cruises pretty well on furniture,
and walks holding onto someones hands. She loves to “sing” and babble.
Our Becca is still our cuddle bug. Right now she is pulling on the laptop
trying to get my attention.

Tuesday, January 2, 2007 7:24 PM, CST

Christmas was wonderful. Rebecca had a great time, trying to unwrap her
presents. She was a little overwhelmed by all her new toys, but she is very
happy.
Today was her second Chemo treatment. All went well. Because the
antiobiotic we give her three days a week was interfering with her blood
counts we have had to swtich to a different type that is given through an
infusion once a month.
Happy news to report that Rebecca is crawling now. Not far and not much
yet, but its still in the first few days of crawling.
Thank you to everyone for your praryers!

Friday, December 8, 2006 7:38 AM, CST

Rebecca had her frist treatment yesterday for the optic gliomas.
Ya know – the Dr’s and Nurses at Duke are great – but the system is
horribly innefective! First off, the woman at check in forgot to put
Rebecca’s paperwork back there for the nurses, so the nurses never knew
we where there. We waited over an hour before we were taken back. The
woman claimed it was becuse things got so busy when we got there (I
didn’t see all those people). So for a 9am appt, and what should have been
3 hours of treatment, we were leaving at 3:30.
3 hours of treatment, we were leaving at 3:30.
Rebecca did pretty good while we were there. Mostly slept. Santa was in
the Children’s Health Center and although Rebecca didn’t get to see him,
one of his helpers brought Rebecca a present – a nice cute stuffed animal.
Santa bought toys for all the boys and girls in the Health Center that day.
Rebecca got sick around 9 last night, so David and I had to clean her up,
and change her sheets. While changing her sheets, she got sick again.
Then she didn’t want to go back to sleep. So she played in her crib for at
least an hour. I got smart though and took out all the soft toys – just in
case they were in the line of fire.
Already this morning she is playing and doing well. But then again, she
just finished her bottle. We shall see how long it lasts in her tummy.
I don’t know how these treatments are going to go in the long run – as far
as keeping her occupied. Rebecca really wants to be climbing around and
because the treatment area is really just a row of chairs anyplace for her to
play. There are a few game systems and TV’s with VCRs for older kids
though. We shall see!

Sunday, December 3, 2006 5:06 PM, CST

Here it is Sunday and Rebecca is already doing a lot better. She is back to
playing almost normal – not quite 100%, but probably 80% or so.
Just wanted to post a quick note to let everyone know she was doing so
well.

Friday, December 1, 2006 7:11 PM, CST

Surgery went well today. We were home by noon. Rebecca is very sore and
very tired. She really doesn’t like anyone touching her – even holding her. I
guess the first few days post-op we just move through the days as best we
can. Each day Rebecca will feel better.

Tuesday, November 28, 2006 5:21 PM, CST

We met with Rebecca’s new Dr today.
Rebecca will start Chemotherapy next Thursday (December 7th).
They were actually able to get her in really quick for the surgery to implant
the Infuser Port – that is going to be this Friday (December 1st). It will be
a same day surgery if all goes well.
Then Thursday, and every fourth thursday thereafter for the next year,
Rebecca will go to Duke for outpatient Chemotherapy.
Chemotherapy is the single best way to treat this tumor type. Although it
is benign, the pathology doesn’t matter. It is still a bunch of cells growing
and behaving in ways they shouldn’t.
Her hair shouldn’t fall out, but she will be nauseous. She will get Nausea
medication each time before her chemo starts.
We will also have to get blood cultures done weekly. The nurse from Dr.
G’s office is trying to work it out for us to go to the clinic over on Herndon
Rd for those, so we don’t have to come to Duke each week.
The port, will be completely under her skin. Doctors will be able to
administer medications through it, and use it for blood draws. It will save
her in the end from starting a new IV each week, and multiple sticks each
time.
Here is a great site with info on the Port – click on Subcutaneous Ports on
the Right. Its a really neat Audio/Visual to describe it all.
http://cancer.duke.edu/btc/modules/learningcenter15/index.php?id=1#

Tuesday, November 21, 2006 2:07 PM, CST

Well the hospital visit was much more long and drawn out than we
planned. Rebecca had the Video EEG monitoring. She also had a PET scan
and another MRI. We met with Dr. Gururangan (aka Dr. G) because of the
bi-lateral optic gliomas found on the previous MRI. The new MRI done was
to focus on this region. Since surgery is not an option with this type of
tumor she will need to have chemotherapy to stop the growth (and
hopefully shrink) the gliomas. Rebecca will have a portacath put in so the
chemo will be easy to administer. All of the chemotherapy treatments are
scheduled to be outpatient.
However, before she can begin chemo the Neruologists and Neruosurgeon
need to decide if there is anyting that can be surgically done to help
Rebecca’s seizures.
So right now we are still in a hurry up and wait pattern. We meet with Dr.
G again next week, any maybe by that time the Neruo team will have
reviewed her EEG, MRI and PET scan and made a decision.

Friday, November 10, 2006 7:30 AM, CST

Rebecca will have a new Video EEG (VEEG) done at Duke next week. We
check in on Tuesday. The VEEG will entail having the electrodes attached
to her head to monitor the brain activity – particually the seizure activity.
There will be a button that David or I can push each time we see Rebecca
having a seizure. This will make a notation in the recorded file so doctors
can go back and compare the brain activity and know more about where in
her brain her seizures originate from. The only downside for Rebecca to this
will be that she will be somewhat limited in what she can do. There is a
pretty long lead on the eqiupment lines, but she won’t be able to be as
active as she is at home. She is quite good at rolling all over the floor at
home.
Later this month we will meet with a Neruosurgen to discuss the fact that
the right hemisphere of her brain continues to grow larger than the left and
is starting to cause too much pressure in her skull. Right now I don’t know
much more than that.
We also know that she has bi-lateral optic gliomas, which are directly
related to Neurofibromatosis. It appears these have also grown. Although
these are benign, we will be meeting with a Neruo-oncologist to discuss
options. Surgery is usually not an option for these types of tumors because
it is nearly impossible to operate without doing more harm than good.
I will try to keep everyone updated

Friday, November 10, 2006 6:28 AM, CST