Tuesday 1-11-11
Another uneventful day....no seizures thus far (8 pm ).
Dr. Holder and Dr. Patterson did more "mapping", see yesterday's notes for details.
If Alannah has seizures in the middle of the night tonight, they may perform surgery later
in the morning tomorrow. If not, then the surgery probably won't happen until Friday.
Zia Marianicola came today and brought lunch, with grandma and grandpa. We had a nice visit.
Father John, our priest, came to visit this afternoon too. We had a fun visit and he gave
Alannah a special blessing.
When Dr.Holder came in yesterday and saw Alannah's Steeler emblem on her headwrap, she was not
happy. She is a Cleveland Browns fan, having grown up in Ohio. So we had an interesting
conversation about how she lives in Pittsburgh now, and she probably shouldn't hate the
Steelers. She doesn't agree. I had the feeling that she is one of the very few, or maybe
the ONLY Cleveland Browns fan in this hospital.....so we decided to support her a bit and today
we asked one of the nurses to print off a Cleveland Browns pic for Alannah's headwrap
( she has requested to remain nameless - she doesn't want anyone to know
she printed a Cleveland Browns pic for a pittsburgher ). We think Dr. Holder was happy with
Alannah's support, but we took a lot of flak from all the others who came into her room
today. Alannah decided it was worth it for Dr. Holder.
Eric and I are tired, but we are happy that Alannah is well loved by family, friends and
all the people who come into contact with her. We know that she is well taken care of here
and that makes the whole situation easier to handle. I think once this is all done, and she
is well, Eric and I will probably sleep for a week straight.
Good night.
Tuesday, January 11, 2011
MONDAY - JAN 10, 2011
DAY 7 MONDAY JANUARY 10, 2011
Well, today when Alannah woke up, I could see wires under the head wrap because she
had moved around so much in her sleep that she had worked some gauze up and off
the wrap. I freaked out a little bit, but true to experienced nurse form, no one
else freaked out. They just sent some people to re-wrap it....new headwrap pictures
to follow...
Bad night sleep again for Alannah, and of course, for the parents too. She was itchy,
itchy, and more itchy under the headwrap.....so she got a dose of Benadryl to help with
that. They informed us that it would probably make her sleepy, which we thought might
work out well since she hadn't been sleeping well. However, Alannah never does anything
as they predict, so instead of getting sleepy, she was up for 3 hours....all you can
do is laugh....so go ahead, laugh.
They decided to do some "mapping" today, which means that they stimulate certain
electrodes in her brain to determine exact placement of electrodes over the "motor"
areas of her brain. This is the area of her brain which controls the muscles
that move the left side of her body. So when they do this stimulation, it moves her
hand or facial muscles. They do this procedure to determine exact
location of motor areas of the brain, so that they don't remove or disturb this
part of the brain when they are removing the epileptic brain tissue. It went very
well, and Alannah cooperated pleasantly, although, she didn't like it too much.
She said, after they left, that it was weird....
The surgery has definately been canceled for tomorrow. She, as of today at 4pm, has
not had any seizures yet. They have to see at least 3-4 seizures before they can
have all the information they need for the most successful surgery outcomes. So we will
wait.....if she has any tonight or tomorrow morning, the surgery may be Wednesday....if not,
it may be Friday. And if all else fails, it may even be pushed to next week. We obviously
don't want to be here forever, but it is way more important that they have all the info they
need for the most successful outcomes.
Grandma and grandpa made their lunch run today....and brought Alannah one of her favorites:
McDonald's chicken nuggets. She ate them all! Uncle Ben and Aunt Mary also came today and
brought delicious dinner. They also got to experience Alannah's new water gun....which
just happens to be an old saline syringe. She had a good old time trying to soak every one's
face! That thing can shoot pretty far! ( see pics ) Aunt Denise and Uncle Rick came over
too, they did not get to escape the water gun either! Alannah also played some games with
her visitors and of course, watched some movies.
The doctors have now ordered that Alannah be "sleep-deprived", which means she is only allowed
to sleep from 12am-6am, no naps. They are doing this because sometimes, sleep deprivation
can cause seizures, and they are doing everything they can to bring the seizures on. Eric and I
were thrilled to hear that our already very short sleeping hours were going to be reduced
even further. Eric and I take "shifts" at night. One of us is always awake, watching her,
making sure that she doesn't yank off her headwrap or have a seizure that someone misses or
rolls over and konks her head on the bed rails. Eric brought a laptop for us to use and
we use our "awake shift" to blog, or watch movies, or check email, etc. Sometimes we are
exhausted at the "changing of the shift" so we whine and complain about something trivial
and give each other dirty looks.....then we're over it. And then we usually laugh about
it later....usually.
Nurse Darla let Alannah play nurse and "give her an IV" which was a lot of fun. They were
shooting "medicine" (aka saline water) into her IV.....which is of course how the whole water
gun thing started. This is just another example of how the nurses go out of their way
to make Alannah feel good and have fun.....they are wonderful! ( see pics )
I think that's all for today.....
Well, today when Alannah woke up, I could see wires under the head wrap because she
had moved around so much in her sleep that she had worked some gauze up and off
the wrap. I freaked out a little bit, but true to experienced nurse form, no one
else freaked out. They just sent some people to re-wrap it....new headwrap pictures
to follow...
Bad night sleep again for Alannah, and of course, for the parents too. She was itchy,
itchy, and more itchy under the headwrap.....so she got a dose of Benadryl to help with
that. They informed us that it would probably make her sleepy, which we thought might
work out well since she hadn't been sleeping well. However, Alannah never does anything
as they predict, so instead of getting sleepy, she was up for 3 hours....all you can
do is laugh....so go ahead, laugh.
They decided to do some "mapping" today, which means that they stimulate certain
electrodes in her brain to determine exact placement of electrodes over the "motor"
areas of her brain. This is the area of her brain which controls the muscles
that move the left side of her body. So when they do this stimulation, it moves her
hand or facial muscles. They do this procedure to determine exact
location of motor areas of the brain, so that they don't remove or disturb this
part of the brain when they are removing the epileptic brain tissue. It went very
well, and Alannah cooperated pleasantly, although, she didn't like it too much.
She said, after they left, that it was weird....
The surgery has definately been canceled for tomorrow. She, as of today at 4pm, has
not had any seizures yet. They have to see at least 3-4 seizures before they can
have all the information they need for the most successful surgery outcomes. So we will
wait.....if she has any tonight or tomorrow morning, the surgery may be Wednesday....if not,
it may be Friday. And if all else fails, it may even be pushed to next week. We obviously
don't want to be here forever, but it is way more important that they have all the info they
need for the most successful outcomes.
Grandma and grandpa made their lunch run today....and brought Alannah one of her favorites:
McDonald's chicken nuggets. She ate them all! Uncle Ben and Aunt Mary also came today and
brought delicious dinner. They also got to experience Alannah's new water gun....which
just happens to be an old saline syringe. She had a good old time trying to soak every one's
face! That thing can shoot pretty far! ( see pics ) Aunt Denise and Uncle Rick came over
too, they did not get to escape the water gun either! Alannah also played some games with
her visitors and of course, watched some movies.
The doctors have now ordered that Alannah be "sleep-deprived", which means she is only allowed
to sleep from 12am-6am, no naps. They are doing this because sometimes, sleep deprivation
can cause seizures, and they are doing everything they can to bring the seizures on. Eric and I
were thrilled to hear that our already very short sleeping hours were going to be reduced
even further. Eric and I take "shifts" at night. One of us is always awake, watching her,
making sure that she doesn't yank off her headwrap or have a seizure that someone misses or
rolls over and konks her head on the bed rails. Eric brought a laptop for us to use and
we use our "awake shift" to blog, or watch movies, or check email, etc. Sometimes we are
exhausted at the "changing of the shift" so we whine and complain about something trivial
and give each other dirty looks.....then we're over it. And then we usually laugh about
it later....usually.
Nurse Darla let Alannah play nurse and "give her an IV" which was a lot of fun. They were
shooting "medicine" (aka saline water) into her IV.....which is of course how the whole water
gun thing started. This is just another example of how the nurses go out of their way
to make Alannah feel good and have fun.....they are wonderful! ( see pics )
I think that's all for today.....
 |
| THE OLD HEADWRAP....ABOUT READY TO FALL OFF! |
 |
| NEW HEADWRAP WITH EVERY ONE'S FAVORITE TEAM EMBLEM! |
 |
| DOING HER BREATHING EXERCISES |
 |
| BEATING HER MOM AT A GOOD OLD GAME OF CANDYLAND |
 |
| PLAYING NURSE WITH NURSE DARLA! |
 |
| ALANNAH LOVES TO GIVE SHOTS TO SOMEONE ELSE! |
 |
| ALANNAH PREPARING NURSE DARLA FOR HER I.V. |
 |
| IT'S TIME FOR THE BIG PINCH! |
 |
| AND NOW FOR YOUR MEDICINE! |
 |
| ALANNAH HAS COLLECTED A TUBE OF "BLOOD" FROM NURSE DARLA |
 |
| ALANNAH WORKING HER "WATER GUN" SYRINGE ON UNCLE BEN |
 |
| AND AUNT MARY! |
 |
| PLAYING TROUBLE WITH AUNT MARY |
 |
| ONE OF THE NURSES MADE OUR PRINCESS A TIARA TODAY |
Monday, January 10, 2011
Sunday - January 9, 2011
DAY 6 SUNDAY JANUARY 9, 2011
marilena writes:
The second surgery may not happen Tuesday. She hasn't had any seizures yet, and unless she has them
tonight or early tomorrow morning, they won't have enough time to do everything prior to scheduled
surgery time on Tuesday. Therefore, the surgery may be rescheduled to Wednesday or Friday.
Eric went to the blood bank yesterday and donated some blood, because we found out that he is the same
blood type as Alannah. And since she needed a blood transfusion during the 1st surgery, he decided to
go ahead and donate in case she would need blood products again. He fainted at the site of his own blood....
ha ha, just kidding. He's a tough old cookie.
Compare Chris came over today, and brought a special lunch from P.F. Chang's. He stayed for a long while and
we had a nice time. While he was there, Zizi Frank came to visit and he played Connect Four with Alannah.
He wanted a rematch with the farm game, but Alannah wasn't handing out rematches today. She wanted to play
Connect Four (see the pics), and she told him where to put all his chips, so she won again! Imagine that!
She was suppose to have an MRI today, but they canceled it because they didn't want to take the chance of missing
any seizures while she was at the MRI. (because during the MRI they would have to unhook her from the monitor).
So MRI will be scheduled for a time after they record some seizures.
eric writes:
Nurse Kalani (yes, this is an Hawaiian name but she was born and rasied in the
'burgh. Her parents were in the service and stationed in Hawaii for a while) is
back for another round tonight. Tonight after Alannah washed up for bed, Kalani
sat down with her and talked about what was going to happen during the midnight
blood draw for her sodium level check. (See pics of Alannah wearing the gloves
and practicing on Kalani.) She is hoping to avoid a repeat of
Alannah's performance from last night.......
[flashback to last night, queue the wavy screen effects]
.....Kalani came in around midnight to draw the blood for the sodium level check
and Alannah just freaked out. She started to cry, whine and got herself so
worked up that she was up for about 2 and half hours. After a little while,
Kalani came back in to try to help settle Alannah down. Kalani sat on the bed
and helped Alannah hold her baby doll and finally got Alannah to sleep. Kalani
got up from the bed and turned around to make sure Alannah was asleep, she raised
the bedside rail halfway and looked at Alannah to make sure she was still asleep,
she raised the rail all the way up and taking care not to make the locking
mechanism click and looked at Alannah to make sure she was still asleep, she went
to open the door and Alannah opened her eyes and said, "Where are you going?". I
watched the whole thing from the other side of the bed and Alannah was sleeping.
Kalani told her she had to go check on the other kids she was looking after and
said she would be right back. Alannah said "OK" and slowly drifted off to dream.
I tried to take some pics without the flash of her sleeping and holding her baby.
Alannah didn't sleep well the night before last and she skipped two days worth
of naps. She has been taken off her anti-seizure meds in an effort to induce
some seizures so that the doctors can get the data to help with the second
surgery. Typically, these meds are weened off and on. Her body has been under
alot of stress from this little thing called brain surgery and this "hat" she has
to wear is really start to get to her. It is so itchy that she wiggles her head
back and forth on the pillows and she has the thing so crooked that it looks like
she a one or two drinks too many. she might be sporting a new head wrap tomorrow.
So, I guess she has a few legitimate reasons to freak out. For a 5 year old, she
is holding up extremely well and deserves a "FREAK OUT" moment or two.
No fevers today, and sodium levels stayed stable.
marilena writes:
The second surgery may not happen Tuesday. She hasn't had any seizures yet, and unless she has them
tonight or early tomorrow morning, they won't have enough time to do everything prior to scheduled
surgery time on Tuesday. Therefore, the surgery may be rescheduled to Wednesday or Friday.
Eric went to the blood bank yesterday and donated some blood, because we found out that he is the same
blood type as Alannah. And since she needed a blood transfusion during the 1st surgery, he decided to
go ahead and donate in case she would need blood products again. He fainted at the site of his own blood....
ha ha, just kidding. He's a tough old cookie.
Compare Chris came over today, and brought a special lunch from P.F. Chang's. He stayed for a long while and
we had a nice time. While he was there, Zizi Frank came to visit and he played Connect Four with Alannah.
He wanted a rematch with the farm game, but Alannah wasn't handing out rematches today. She wanted to play
Connect Four (see the pics), and she told him where to put all his chips, so she won again! Imagine that!
She was suppose to have an MRI today, but they canceled it because they didn't want to take the chance of missing
any seizures while she was at the MRI. (because during the MRI they would have to unhook her from the monitor).
So MRI will be scheduled for a time after they record some seizures.
eric writes:
Nurse Kalani (yes, this is an Hawaiian name but she was born and rasied in the
'burgh. Her parents were in the service and stationed in Hawaii for a while) is
back for another round tonight. Tonight after Alannah washed up for bed, Kalani
sat down with her and talked about what was going to happen during the midnight
blood draw for her sodium level check. (See pics of Alannah wearing the gloves
and practicing on Kalani.) She is hoping to avoid a repeat of
Alannah's performance from last night.......
[flashback to last night, queue the wavy screen effects]
.....Kalani came in around midnight to draw the blood for the sodium level check
and Alannah just freaked out. She started to cry, whine and got herself so
worked up that she was up for about 2 and half hours. After a little while,
Kalani came back in to try to help settle Alannah down. Kalani sat on the bed
and helped Alannah hold her baby doll and finally got Alannah to sleep. Kalani
got up from the bed and turned around to make sure Alannah was asleep, she raised
the bedside rail halfway and looked at Alannah to make sure she was still asleep,
she raised the rail all the way up and taking care not to make the locking
mechanism click and looked at Alannah to make sure she was still asleep, she went
to open the door and Alannah opened her eyes and said, "Where are you going?". I
watched the whole thing from the other side of the bed and Alannah was sleeping.
Kalani told her she had to go check on the other kids she was looking after and
said she would be right back. Alannah said "OK" and slowly drifted off to dream.
I tried to take some pics without the flash of her sleeping and holding her baby.
Alannah didn't sleep well the night before last and she skipped two days worth
of naps. She has been taken off her anti-seizure meds in an effort to induce
some seizures so that the doctors can get the data to help with the second
surgery. Typically, these meds are weened off and on. Her body has been under
alot of stress from this little thing called brain surgery and this "hat" she has
to wear is really start to get to her. It is so itchy that she wiggles her head
back and forth on the pillows and she has the thing so crooked that it looks like
she a one or two drinks too many. she might be sporting a new head wrap tomorrow.
So, I guess she has a few legitimate reasons to freak out. For a 5 year old, she
is holding up extremely well and deserves a "FREAK OUT" moment or two.
No fevers today, and sodium levels stayed stable.
 |
| Sleeping with bitty baby |
 |
| "no, not there, zizi frank. put it in this row..." |
 |
| Nurse Kalani teaches Alannah about cleaning her PICC line and lets Alannah practice on her elephant |
Sunday, January 9, 2011
SATURDAY JAN 8, 2011
DAY 5 SATURDAY JAN 8TH, 2011
The nights have been kind of rough these past 2 nights......that's the time of the day when
there is nothing to distract her from the itching under her "hat" and the discomfort of the "hat".
She is so irritable that the least bit of movement will wake her up and she'll cry and whine for hours. This, of course, drives me
almost to the nuthouse. I am trying to be a good, understanding mother, unfortunately, sleep
deprivation makes me less amicable. I told her I couldn't take it anymore, and true to Alannah form,
she said, "You'll have to take it." Good thing we're being video taped or I may lose control!!
Big sister Bella came to visit and they had a good time fighting over coloring pages and watching
a movie together. Bella stayed for lunch and dinner and played with all of Alannah's new toys. (Pics
to follow.) We were all really glad to see Bella, we miss her. Love you Bella.
Alannah taught the nurses some yodeling today....they got a big kick out of that. She's a girl of
many talents!
Still waiting for seizures to happen.....somehow Alannah always puts her own spin on things. When we
don't want her to have seizures, she has 50-100 per day. When we need her to have them....nada.
Go figure. Well, tomorrow is another day.
Zizi Frank came to visit today, and played the farm game with Alannah and helped her finish a color
wonder picture. Frank lost the game, but accused his 5 year old niece of cheating! Sore loser syndrome...
did I say that? Grandma and grandpa also made their daily lunch run....they are suppose to take tomorrow
off.....we'll see how that goes.
I wanted to say thanks for all the well wishes people have been sending via email and through other people...
I'll try to answer them all, but be aware that if I don't, it's only because I'm either busy with
Alannah, busy worrying, or busy bothering the nurses!
Tomorrow Alannah has another MRI....they have to see the placement of certain electrodes before the
surgery....hopefully the movie goggles are fixed.
Compare Chris came to visit on Thursday and is planning to come back tomorrow....Alannah always loves
when he comes to visit. They chit chat and we all get a big kick out of Chris's immediate reaction
to the site of anything with blood in, on or around it. I remember the day of the first surgery,
when he was with us in the waiting room, and the doctor came to update us on the procedure....I thought
he would vomit just from the details she was giving us, but he held his own! I give him kudos
for hanging in there. He's always very supportive of Alannah, which we truly appreciate. He has been,
and will always be, a good godfather.
Alannah's temperature came back up a little today, nothing they're worried about yet. Her sodium
levels have been staying stable.
Well, that's all for now.....until tomorrow.
Hugs and kisses to all.
The nights have been kind of rough these past 2 nights......that's the time of the day when
there is nothing to distract her from the itching under her "hat" and the discomfort of the "hat".
She is so irritable that the least bit of movement will wake her up and she'll cry and whine for hours. This, of course, drives me
almost to the nuthouse. I am trying to be a good, understanding mother, unfortunately, sleep
deprivation makes me less amicable. I told her I couldn't take it anymore, and true to Alannah form,
she said, "You'll have to take it." Good thing we're being video taped or I may lose control!!
Big sister Bella came to visit and they had a good time fighting over coloring pages and watching
a movie together. Bella stayed for lunch and dinner and played with all of Alannah's new toys. (Pics
to follow.) We were all really glad to see Bella, we miss her. Love you Bella.
Alannah taught the nurses some yodeling today....they got a big kick out of that. She's a girl of
many talents!
Still waiting for seizures to happen.....somehow Alannah always puts her own spin on things. When we
don't want her to have seizures, she has 50-100 per day. When we need her to have them....nada.
Go figure. Well, tomorrow is another day.
Zizi Frank came to visit today, and played the farm game with Alannah and helped her finish a color
wonder picture. Frank lost the game, but accused his 5 year old niece of cheating! Sore loser syndrome...
did I say that? Grandma and grandpa also made their daily lunch run....they are suppose to take tomorrow
off.....we'll see how that goes.
I wanted to say thanks for all the well wishes people have been sending via email and through other people...
I'll try to answer them all, but be aware that if I don't, it's only because I'm either busy with
Alannah, busy worrying, or busy bothering the nurses!
Tomorrow Alannah has another MRI....they have to see the placement of certain electrodes before the
surgery....hopefully the movie goggles are fixed.
Compare Chris came to visit on Thursday and is planning to come back tomorrow....Alannah always loves
when he comes to visit. They chit chat and we all get a big kick out of Chris's immediate reaction
to the site of anything with blood in, on or around it. I remember the day of the first surgery,
when he was with us in the waiting room, and the doctor came to update us on the procedure....I thought
he would vomit just from the details she was giving us, but he held his own! I give him kudos
for hanging in there. He's always very supportive of Alannah, which we truly appreciate. He has been,
and will always be, a good godfather.
Alannah's temperature came back up a little today, nothing they're worried about yet. Her sodium
levels have been staying stable.
Well, that's all for now.....until tomorrow.
Hugs and kisses to all.
 |
| Coloring - a favorite passtime for the sisters |
 |
| Fighting over the markers, another favorite passtime of the sisters |
Saturday, January 8, 2011
PICTURES FROM FRIDAY, JAN 7, 2011
 |
| SNOWFLAKE MADE BY BIG SISTER BELLA |
 |
| GOOD THING ALANNAH'S LEGS ARE SHORT, BECASUE THIS IS WHAT THE END OF HER BED LOOKS LIKE! |
 |
| ALANNAH CHEATING |
 |
| ALANNAH KNOCKING DOWN THE OPPONENT |
 |
| STILL LOVES THE CHIPS! |
 |
| BATHROOM DOOR LOOKS MUCH BETTER DECORATED, SNOW FLAKES MADE BY BELLA'S CLASSMATES |
 |
| GET WELL CARDS |
 |
| THE BALLOON CORNER |
 |
| PAPER CRANES HANGING IN ARCHWAY, ALSO MADE BY BELLA |
 |
| WATCHING TV IN CHAIR, SAT UP FOR 3 HOURS TODAY! |
 |
| BALLOON CORNER GETS NEW ADDITION |
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