Butler in the Final Four!

The Hoover Family picked Butler to win the NCAA championship because Butler is Lauren's middle name.

Butler just knocked off Kansas State to earn a spot in the final four! Not only that but they will either be playing Michigan State or Tennessee in their home town of Indianapolis.

In this year of upsets, we all know who to root for now!

The Golden Period

Yesterday, Sandra and I attended Lauren's 2 pm physical therapy appointment to review spotting and transfers in preparation for Lauren's visit home.

We practiced getting up out of the wheelchair and onto the walker, walking down the hall with her walker, and we went to the stairwell to practice going up and down one step (for going up the one step at the front door). Lauren wears a blue Velcro belt around her waist that we can loosely hold on to, but also use to catch her if she starts to fall. Then Lauren got back in the chair and we went down to the parking garage to practice getting in and out of the car. It all went pretty well.

Afterwards, we went back to the PT gym and watched Lauren do exercises with her Physical Therapist Ashley. They took her to the parallel bars where Lauren would put her right foot on a 5" high wooden box then take it back down, then she would do the same with her left foot (the weaker one). This is called mirroring. By doing it with both the right and left sides, the brain will make new connections. They do it continuously and repetitively to build strength and make these neuro connections. Ashley turned her sideways then and put down a foam block that was 5" square and about 2' long. Lauren would have to side-step over it with her left leg, transfer her weight and then bring her right leg over next to her left one. Back and forth, over and over. The next exercise was walking along the parallel bars and high stepping, like a Clydesdale, and the last exercise was called "kicking your butt", where you swing your heel up high towards your buttocks. This was my first observation of her PT and I found it very interesting. The physical and occupational therapists here are remarkable.

A 3 pm, Lauren went off to music therapy while Sandra and I had the family meeting. We met with the Dr. Kim's nurse practitioner Danielle, the social worker Wanda, physical therapist Ashley, occupational therapist Kate and psychologist Rebeca. Dr. Kim was supposed to be there but had a conflict. We ended up meeting with him later, one on one. We are still on track for an April 13th release, but we found out that she will still be treated here daily for another 4 weeks after that. So, another three weeks as an inpatient, then four weeks in what they call the Day Hospital. They do this for several reasons. The first is that now is what Dr. Kim called the Golden Period. The most progress is made in the first three months after a brain injury, which is what Lauren is effectively recovering from now. More progress is made by working intensively now than would be achieved by working more moderately for a longer period of time. The brain is healing, making connections, and if we do not facilitate them now we will lose the opportunity. Lauren was disheartened by this, she was thinking that on April 13th she would go back to school. Instead she will be coming back to the Seashore House daily until mid-May. They also offered Lauren to go to Camp Cranium (http://www.campcranium.org/) which is in early June, so if she makes it to school this year, it will probably only be for 3 weeks.

Kate and Ashley both said that Lauren is a remarkable girl and they both said they loved her. They noted that she is making great progress. Ashley said that Lauren will walk, run, swim, and ride a bike again (not that she ever rode a bike much). It is also quite likely that she will wear an ankle brace for the rest of her life. Kate said that her fine motor skills are coming back quite well. Remember the exercise where she finds the beads in the silly putty? It was a quite intensive therapy then. Now, Lauren and Kate chit chat while Lauren makes beaded friendship bracelets for both of them. Which they both wear and of which Ashley was jealous and asked for one too. Kate said she literally uses a mirror when they do mirroring exercises so that Lauren can see how the right and left side of her body move differently and make the adjustments necessary to move similarly (bi-laterally). Kate said she is working on getting Lauren's core strong as sometimes she will slump to the left. She said with conditioning and mirroring that can be eliminated. I was thinking today about the quality and quantity of conditioning and exercise that Lauren is benefiting from, she has two personal trainers focusing on her all day long.

Rebeca said that while Lauren gets frustrated at times, her overall attitude is good. She is positive and motivated. Lauren seems more willing to participate in activities now, prior to her surgery she would not attend Epilepsy Foundation meetings or support groups. She wanted to just be normal, denying her condition. I was shocked when she was so enthused by Camp Cranium, I think Ashley did a great job of selling it.

So, all in all, it was an educational day. Learning about mirroring and the Golden Period.

Time Together and to Reflect

Lauren had a field trip yesterday. The whole crew from our floor went to the Penn Museum of Anthropology and Archaeology. Its only a block away, but it got them all out of the hospital for a while.

Sandra and I got to spend the night together last night. Drank wine, went out to dinner, James was at a school dance. Tonight is James' basketball championship game. We are both looking forward to attending that too.

We ran together this morning and afterward made some observations.

First we both feel guilty for running while Lauren struggles to walk. We decided we were going to see what her therapies are going forward. Maybe we will become walkers or swimmers.

The second thing is how much I/we miss Dr. Storm. Here is a person, in whose hands we put our daughter's life and future. That creates a connection, as least for me. He was there for us for a month and now he's gone. Not that I would expect anything else, and I am sure we will see him again, but I have a little feeling of abandonment. I wonder if they tell them about that in medical school or their fellowship.

So...Where Are We?

I am starting to wonder if daily updates are necessary. So tonight I will wrap up with a synopsis of where we are, as in what Lauren can actually do. Then going forward, if there is something newsworthy to report, I will. Otherwise...

So Lauren is doing well. The reports we get back from the people that work with her are all good. This morning she woke up, ate the bagel I ordered for her and dressed herself in bed. She cannot dress herself out of bed yet as she cannot stand long unsupported. As I said earlier, she can move some of her left leg independently but frequently she will need to pick it up with her hands. She still wears a padded turquoise boot on her left leg in bed, but switches to the slimmer and lighter lavender (with hot pink straps!) leg brace for action. She wears regular socks and sneakers on both feet, so when she has long pants on you cannot see the much of the lavender brace.

Once dressed she sits upright on the edge of the bed, lifts herself up and pivots into the wheelchair. She is getting good at driving the chair. She moves herself into the bathroom where she reverses the bed pivot only this time onto the toilet. The sink is HC accessible so she can wheel up to it too and wash hands and brush her teeth and hair. And that's it! She can also do those things with a walker, it just takes longer and requires more spotting. Of course, I think they prefer her to use the walker as it builds her strength and balance, but they also know they are working her hard the rest of the day so they cut her some slack.

In general, Lauren looks good and her spirit is good too. She commented to her mom that it had been several days since she got sad at night. She is sleeping well, no seizures, and no complaints of headaches.

This morning she complained that she was having vision problems. So that continues to come and go. The Neurologist, Dr. Clancy said he feels it is from the mega dose of Dilantin they gave her after the seizure she had following the last surgery. Dr. DiLuna (Good Fellow Mike) also said he did not feel their was any type of infection. Sandra clarified that Dr. Liu was non-specific about his mystery infection. So, like everything else, we will have to see.

Beyond that, Sandra and I are getting lessons on administration of emergency anti-seizure meds, car-wheelchair transfers, etc. in preparation for Saturday's home visit. Friday we meet with the Rehabilitation Team for a Pow-Wow to review progress (eat your hearts out 7W nurses!).

Are you with me Dr. Liu?

Sandra had a busy day with Lauren yesterday. The capper at the end of the day was the visit with the Opthamologist, Doctor Liu. Sandra said it took a long time, 2 hours and they didn't even dilate her eyes. The doctor was perturbed, saying that a spinal tap was not done after the last exam. He intimated that she may have had an infection and that the spinal tap may have led to an antibiotic treatment that could have avoided scarring. Sandra wasn't very clear with me about what was scarred or what the long term consequences of such scarring would be. Lauren appears to be seeing 20/20 and she is on Facebook, which has a small font, as does her telephone text messages. Overall, the whole eye thing is resolving itself. He didn't even remember seeing Lauren previously, so maybe he thought he ordered something, or maybe he was covering up an oversight. She was being treated with antibiotics prophylactically anyway. We have a follow up appointment with him in 3 months.

I'm at the hospital now. Since I worked today I had to get briefed by Lauren. OT started in the pool. Lauren said she practiced lowering herself into the pool and swam freestyle while using a noodle. She then had PT for half an hour, which consisted of doing work on the parallel bars. Practicing walking, stepping over obstacles, uneven and soft surfaces. Lunch was next, followed by an hour with the teacher, who reviewed her schoolwork. Then more time in PT doing work with weights and other exercises. Last activity of the day was community art therapy. I looked for her work but could not find it. They certainly are working her hard.

When I arrived, Grandma was there. She hung out for a while but Lauren fell asleep. Aunt Leslie is coming into town tonight from Washington state. She will be here about a week to bond with her neice and help out.

Clowns and Clonus

Thought I was going to miss a day didn't you?

More PT/OT today, like everyday. When I left Lauren, she was peddling the bicycle with her hands. Not a real bike, just a machine on the desktop that resembles bike pedals. We got a late start though, due to ablutions, knots in pant drawstrings, meds, etc. Kate the OT was patient though. Everything takes twice as long.

DK came by and caught us in the room. His exam showed that she is getting stronger in every facet. With all the exercise she is getting, she is definitely going to rock the beach this summer. We need to put some skin back on her bones though. She lost 10 pounds over the surgery month. Every girls dream right? Well when you are 5'8" tall and 107 pounds it is not good. Lauren said her hip-bones look like daggers. She called them gross. Like everything else, we will make this right.

McDonald's gift cards kindly accepted. If Ronald can't put some meat on your bones, who can? (see Super Size Me)

DK's tests showed her arms are both strong and her left leg is progressing nicely. She is doing well at independently lifting her knee towards her chin, and is also doing well at lifting her whole leg off the ground. She cannot lift her toes off the ground and when you do it manually she has Clonus, which is an involuntary twitching caused because her calf muscles are too tight (too much tone they call it, which seems a contradiction to me). DK said if they cannot resolve the Clonus through exercise, it could hamper her progress. If that were to be the case they will inject her calf with Botox, which will relax the muscles and allow the other muscles to become stronger. I know, Botox? I thought people used that to tighten things. I guess it tightens skin, but loosens muscle. Anyway, I think the goal is to loosen the overworking muscles (which the brain has put into panic mode) and allow the muscles that are being dominated to do their job.

She got into the pool today too. With flippers! 5 weeks ago she was working towards her lifesaving certification.

Went to see her friends on 7W today and had an Ophthalmologist appointment today too.

Anyone Recognize This Girl?

That's why we call her Laurie Lou Who!

Keep Calm and Carry On

I saw a t-shirt today with this on it while running on Forbidden Drive. Sounds very British, I like it.

I looked it up, it was one of several posters produced by the British government during World War II. This particular phrase was to be used when Germany invaded/occupied Britain. As that never happened it was never officially seen by the public.

Spring at Last!

I can't find any better metaphor to motivate Lauren, or the rest of us for that matter. After a long, snowy winter, spring is here at last.

Saturdays still have PT & OT, just half as much. Schoolwork will be thrown in the mix next week. Sandra reports that she, Lauren and their roommates Lauren (mom) and Marissa slept through the night with no interruption. The new room is great, looks like a spacious college dorm room with its own HC accessible bathroom.

They had a tentative release date on Friday of April 13th. My guess is sooner, as I would think they would throw out a conservative estimate. A 6-hour pass to leave the hospital is scheduled for next weekend.

Lauren is still having vision issues, probably related to the inflamed optic nerves. The Ophthalmologist is scheduled for Monday. Our friend Carley, the PICU nurse is also friends with the neurosurgical fellow Mike. She said, he said (I love that) that they (the neurosurgeons) feel they got all the bad stuff and are 75% confident these seizures are not epileptic. She has not been having seizures, but she is on medication, including a new one (Phenobarbital) which sometimes presents with a "honeymoon" seizure free period of 6-8 weeks. They are going to start weaning her off of her Zonagran though. So, back to chemistry for dummies, but we are making forward progress.

Happy spring everyone.

Loving DK

Yesterday, they moved Lauren into a room on the other side of the unit. It is a more spacious room and she has a 14 year old girl for a roommate. Sandra says the family is really nice and sweet. The roommate is so filled with anxiety that she has lost her ability to walk. Literally, paralyzed with fear.

Yesterday was a busy one. I had spent the night so I hung around a little bit to see some of the therapy. First thing they did was fashion a lightweight plastic boot for Lauren's left foot. Its purpose is to keep her foot perpendicular to her leg. Since she doesn't have great muscle control around the ankle, this will prevent her foot from "dropping" and will prevent tendinitis. It is lavender, and goes from toe to calf like a sweat sock. Looks like a thin cast, but can slip on and off. Jessica and I convinced Lauren to go with the hot pink Velcro straps, very fashionable. So, that was PT (Physical Therapy). Which if I was to quickly characterize it, handles the gross motor skills. I think they are going to focus on her leg and getting her walking again.

Her next activity was OT (Occupational Therapy) which again, if I was to quickly characterize it, it would be fine motor skills. They had her work on transferring from her wheelchair onto an big, low table with a mat on it, about the size of a double bed. The therapist moved her arms to see how loose she was and had her do some exercises in front of a mirror. Mostly focused on her left arm. While she can use her left arm, it was clear that it is weaker and her motor control was not as fine.

Dr. Kim (code name DK), the rehabilitation medicine doctor stopped by. He is in his late 50's, but Lauren is quite taken by him. Amazing, I have never seen that look on my daughter's face. She is quite smitten, I would even say gaga. Funny thing is, he is nothing to write home about. It has us all baffled.

Other exercises included laying down and swinging her arm up to hit a ball. At first she was floppy with it, by the end controlled. They also made her reach out and grab a tennis ball that they moved high, low, left, right, transfer it to her right hand and hand it back. The last exercise involved opening a little Tupperware container which contained a stiffer Silly Putty and massaging it. They would roll it into a hot dog and have Lauren pinch it along its length with thumb and forefinger, then thumb and middle finger, thumb and ring finger and thumb and pinkie. Lastly, the therapist put 10 beads into the putty, Lauren could use both hands to find the beads, but then she would have to take it out of the putty with her left hand and put it into the Tupperware container with her left hand.

That was the morning, in the afternoon she had more PT and OT and lastly and hour with the Psychologist. By the end of the day, they had her going to the bathroom with a walker. Granted, she had spotters on both sides, but in my mind, that is amazing progress for the first day.

Actually, she doesn't wear glasses.

A BABY?

Things were quiet last night. No seizures I could detect. We had a good nights sleep from midnight on.

We had a couple of visitors, young and old alike. Jessica went out to celebrate St. Patrick's day (I heard someone call it the Irish Christmas) with her girlfriends. Sandra went home to take James to his basketball playoff game (won, 40-22) and get some well needed rest. Apparently the night before she had made the mistake of telling the nurse that Lauren had a couple of small breakthrough seizures and the nurse wanted to give her a suppository. Sandra refused the treatment which created quite the hub-bub.

Yesterday when I arrived at the room, there was an empty crib in the place where a second bed would be. I joked to Lauren, "they stole your baby!". I was joking because I assumed they were storing it in our room. All the rooms here are doubles but ours has got to be one of the smaller ones. In fact the whole Seashore House is a little older, little smaller, and more worn. While the main hospital has been added to and renovated, the Seashore house is a little tired. Later, a nurse came in and started checking the monitor on the adjacent bed. I asked the nurse, "you aren't going to put a baby in here are you?". She apologised and said that she had talked to the charge nurse about it and that yes, they were. A baby with a 16 year old. I went out to discuss the absurdity of this with the charge nurse and she said that it very rarely happened, but apparently when the main hospital is full, they send kids over to the Seashore House as a last resort. That led to a discussion about matching sexes, room availability, arrival order, acute vs. rehabilitation care, and we compromised that the next baby to come in would go in an empty room (apparently the last in the whole hospital complex which comprises 10 buildings, not to mention that Philadelphia has another children's hospital named St. Christopher's), then the next baby could join that one and when the third baby arrived, we would have to share. Of course, if someone more age appropriate arrived we would gladly share with them also.

Having dodged that bullet for now we settled in to sleep. The nurse comes in to put the pulse-ox monitor on her finger (some call it the E.T. finger, which to kids these days means nothing, especially since Drew Barrymore is old enough to have kids of her own), we settle down, then the nurse comes in again to put the calf massagers on Lauren (and warns us again that the hospital is full and we may be having a roommate, i.e. baby), we settle down, then the nurse assistant comes in to do vital signs, we cannot settle down any more. The nurse assistant asks if I saw a menu anywhere. I ask her if she intends to place an order at midnight and she goes on that it is to order food for tomorrow. I say, its midnight, the room is dark, we are trying to sleep, don't sweat the menu. Then I lay back to stew over the acute care baby that might eventually end up in a neurology patients room who needs rest and rehabilitation. Lauren is crying that she hates the leg massagers and wants to go home. The leg massagers are foam sleeves with Velcro fasteners that go on the calves and they inflate and deflate with air to massage the calves and prevent blood clots. This was important when she had been on her back for three weeks, but now that she is moving around, and getting daily Heparin shots in her stomach to thin her blood, they are obsolete. In fact they could probably ditch the Heparin too but things are in her chart and never get removed. She still gets laxatives, even though they are no longer necessary.

I remove the leg massagers (they could have had them on all day, she is trying to sleep now) and the monitor keeps alarming. Not because there is anything wrong, but because the pulse-ox is poorly attached. There is health care reform for you. When we were here with Spencer and Jessica's malignancies they would put a new one on daily at $100 a pop (18 years ago). Now, they don't change them enough. Since the nurse wasn't reacting to the continuing alarms, I took the pulse-ox off and turned off the monitor. That was about midnight. We had a good nights sleep from midnight on.

The baby in the room still amazes me. Major city, one of the best hospitals in the country, and they are putting acute care infants with 16 year old rehabilitation patients. I love babies, and I want them cared for, but there has to be a better way. Any baby that comes in overnight is either injured or infectious, not what you want rooming with someone who needs R&R. It is mixing apples with oranges and seems like a poor treatment plan to me.

Days ending in "y" with Lauren (apologies to Morrie)

Things I have learned from Lauren:

1. Be courageous.
2. Keep your sense of humor.
3. It is not only OK to cry, it's necessary.
4. Take chances (see #1)
5. Don't play games you don't like (on a scale of 1-10).
6. Trust.
7. Love.

Children's Seashore House

They moved Lauren to the Children' s Seashore House today. It is right next door to the Children's Hospital, so it is more of a symbolic move than an actual one. The building is different. It has a lot of elevated outdoor play areas, a pool and is more therapy oriented. We park in the same garage though and if anything went wrong, they certainly can treat her here or wheel her straight to the main hospital.

Today Lauren had her second day of work on her hair. I didn't see it last night or earlier today, but when I arrived tonight, it looked good. It is about 80% done. It is a painful process I understand. Slow and tedious. Apparently the woman that the social worker referred us to for Lauren' s hair care is not the best. I'll call her "Brenda the Beautician", Lauren and Jessica call her "Crackhead" and admit that she makes them a little nervous. At first, we thought she would be really good. Like someone who had a lot of experience reversing dreadlocks and such. But now, 6 hours in, they have the feeling that they may have misjudged her. Perhaps references would have been in order, but we assumed the social worker knew what her work was like. Now, this far into the process, we'll just mark it up as a lesson learned. Jessica is washing and conditioning Lauren's hair tonight with good shampoo and conditioner. Hopefully that will make Brenda's job easier tomorrow as she finishes up.

The Seashore house does patient evaluations on Thursdays and Mondays. This Thursday will be too soon, but they are putting a treatment plan together for Lauren based on another girl her age who had a similar rehabilitation. They will evaluate and revise next Thursday based on how she responds to the inital treatment.

Lauren is much more alert now and Jessica said she had some minor seizures, but that they slept well last night. Sandra is staying tonight.

All in All, Pretty Good.

Sandra and I both worked today. I was with Lauren until about 10:30, then Grandma came and Sandra was back in the hospital by 4 (maybe earlier).

I could tell Lauren was having a good day because when I sent her a text message she responded and seemed in a good mood.

Leah and Lexi are there now, so I know she will enjoy hanging with the cousins.

The EEG's did come off, so now she is mobile. I heard they made a road trip to McDonalds in the hospital. I offered to take her this morning, but I wasn't sensitive enough to get that she didn't want to be seen with matted hair filled with wires. Now with the EEG leads off she still has matted hair, but without wires and they hid her hair with a hoodie.

The neurologist said that these seizures may indeed be seizures, just ones that are not showing up on the MRI. They may go away and they may be treatable with drugs, we will just have to see how things play out. He noted they might go in again as soon as a month from now it they determine that it will be necessary or substantially beneficial. For now, looks like we will could be in the Seashore House as early as Wednesday.

Dare I say... Normal?

Last night was a good night. Lauren was fidgety and weepy, but eventually I said, lets settle down and try to get a good nights sleep. Which we did.

No seizuires, no interruptions. Pretty sweet.

Today we hope to get some meaningful feedback from the neurologists, take the EEGs off, and have the hairdresser in to work on Lauren's hair.

Not So Happy Anniversary

Well, tomorrow will be one month in the hospital. The unfortunate thing is I am not sure what we have gained. Lauren had more seizures last night for Sandra, but the neurologists keep saying the EEG's are clean. I don't know. It walks like a duck.

Moppy, Janis, Susan and Denise visited this afternoon. Brought a couple of cheesesteaks. They commented on Mike, the handsome, buff, Villanova intern who is trailing our nurse. We explained to our nurse that when you are a month in the hospital, you have to make things interesting. I welcomed him to the cougar den. Thank you ladies for being there for Sandra, Lauren and me.

Lauren got a opportunity to Skype with Jessica and Langley this afternoon. Pretty cool, my first time. Lauren loved it and so did I.

Went out with the Borellis to the White Dog. Its been a long time since we frequented that strip of restaurants/bars. Hopefully it will be a long time till we do so again.

Jessica is coming home tomorrow, which means the world to Lauren, and to Sandra and me. Jessica went off to college when Lauren was 11, so I think that was "relationship interupted". Now, Jessica sees Lauren dealing with her difficulties and I am sure it strikes a chord with her. I think she feels that now is the time for her to be home. It reminds me of that segment of the Rocky and Bullwinkle show (dating myself here) when they call Peabody back from the time machine by saying "time for this one to come home". Usually, Peabody had gotten himself in trouble and needed to be rescued, this time Jessica is coming home to rescue us.

She may be coming home until she starts PA school at Emory in August. It is a sacrifice for her, she needs to work and make money. On the other hand, if she doesn't come home now to help us, when would be a more appropriate time? I know it is a blessing for us, an inconvenience for her as well as for the family she nannys for. To them, I am sorry for the inconvenience, but the core of Jessica that makes her such a good nanny to your kids is the same thing that compels her to come home at this time.

Is that the positive side of our cancer experience? Has it made us stronger people? Has it made Jessica a stronger, more sensitive person? Will this experience make Lauren a better, stronger person? I can't imagine how, I must trust it will.

Cruisin'

Just got Lauren in the wheelchair and took her around the floor to see the sights. She is now kickin' back and savoring some Flaming Hot Cheetos. Life is good.

Rainy Day Blues

The only computer available to me right now is in the playroom. So behind me to the right is a chime-type melody from a computer game with occasional characters talking in a foreign language I cannot identify and behind me to the left is an electronic harpsichord sound playing "Jingle Bells" and " Do Re Mi" while the mother sings along and speaks to her daughter in Japanese. May have to keep this post short.

Pretty quiet last night. Lauren goes from sleeping to wanting to be somewhere else. Like home. She is teary and whiney and all I can do is sympathize and give her hugs. A couple of times she would become unsettled and stretch in funny ways that I could not tell if they were seizures or not. So I would hit the EEG monitor button and make notes on the time and type of seizure. The button just marks the place on the digital recording, it does not set off a gong like the hard wired rooms have. Not that we need that. Her seizures are not that severe. She also noted a couple of times to me that she was having seizures (the 8-10 year old kids behind me now want to play x-box, but the play therapist won't let them play Halo or Call To Duty) so I marked them also. The curious thing is that when I met with the neurologists today, they reviewed those marked areas and said they did not see seizures. So that is promising.

Her head still hurts, but I don't think as much as it used to. She complains of blurry vision (so no reading, movies, cards, etc.) and she is generally unhappy and bored. She wants to feel better, lose the EEG grids, be more mobile. Maybe in the next couple of days those things will fall in place for her.

"I Want a PowWow With The Nurses!"

Sandra and I are home now. Enjoying an evening together, dinner and then going to James' basketball game. I will go back to sleep at the hospital tonight. Grandma Jerry is there now.

Kind of an uneventful day. Sandra said they slept OK last night, and today there were not a lot of doctor visitors. I was there this afternoon when the neurologists came in. They said she looked better and they were impressed with the strength in her left leg. Perhaps our rehabilitation will be on the shorter side. We may go to the rehabilitation hospital next week. For now, they want her to stay on the EEG monitors, so she will not be too mobile this weekend.

She is still a little loopy. The drugs they gave her Wednesday night to sedate her have a long half life. Yesterday she was sleeping a lot and slurring her words. Last night and today she was a little disoriented.

She keeps asking Sandra where she is. "You're in the Hospital", "I am"?

She would touch her head and feel the EEG wires. "What's this?", "That is your EEG.", "It is?".

"You had brain surgery", "I did?".

Apparently she woke up in the middle of the night and declared "I want a PowWow with the nurses!", "Which nurse?", "All of them!".

Sandra said it made for a rather entertaining day.

I love this girl!

Searching for Normal.

Dr. Dlugos came to meet with us after the PREP meeting. He said that they consider the seizures to be atypical, which is a good sign. He acknowledged that it represents an emotional setback, but that they do not consider the surgery a failure. We still have the potential for a 50 - 70 % cure rate, only time will tell.

He said that now is not the time to do anything drastic. They want to keep her on her pre-surgery AED medicine, and add a low dose of Phenobarbital to keep the seizures in check until her brain settles down. The seizures may be attributable to the surgery, grids, inflammation. Or they could represent the "new normal". We just don't know for now.

They are hooking up Lauren to a portable EEG monitor (the Cole Hamels, there is some "head case" comment in there somewhere, just can't find it now). Dr. Dlugos was not keen on doing that. He feels that we need to be on a healing, dis-connecting track, if this is the new normal, we will have plenty of time to monitor seizures. However, I think the team convinced him that it may be useful for now to monitor her EEG to see if there is any "quiet" activity.

Clutching at Straws?

The initial feedback from the neurosurgeons is that maybe these were non-epileptic seizures? Their reasoning is that the Atavan should have been effective otherwise. They may have been triggered due to general distress in the brain from resection, healing, inflamed optic nerves, etc.

The neurologist fellow had questions but no answers. She will interview the residents that were on the floor last night.

Lauren is still out of it. PREP meeting at one will most likely produce a plan.

Calm before the storm.

Seemed like a quiet night. I updated the blog, tried to untangle her hair, Lowell came by to visit. Lauren eventually became antsy, said she wanted to go to the bathroom and take a bath.

It was nice, she trusted me to take care of her at the toilet, and let me take care of her in the bath. I let her bathe herself, at one point she asked me to shave under her right armpit as her left arm was weak. I told her she was the first armpit I ever shaved, she laughed. I washed her hair the best I could, which is still terribly matted. I rinsed it and put in a bunch of conditioner, which I left in. I hope it works.

I dressed her in pj bottoms (first time in a while out of the hospital gown) and one of my oxford button-down work shirts. She looked cute and seemed settled. She started to nap, but woke up and had a melt down (see previous post). A first for me though she has had several for her mother. Eventually she fell asleep and I played on the computer. She woke about 11:30 needing to use the bathroom, then went back to sleep.

Around midnight she started to have seizures. They weren't her usual ones, mostly her left arm moving up above her head and sometimes a twisting of the wrist with a downward motion. Her right leg would move, but more in reaction to what she was feeling in her left leg (according to her). Her nurse Chrissy had just left and her new nurse Allison was coming on. I had a difficult time getting a response to the nurse page, so I hit the staff page button on the wall. Why the attendant answers, I still don't know, it is called a "nurse call button" for a reason, right? Anyway, one of those things, like the monitors in the room.

Eventually, we get some attention. The resident puts her on 2 mg of Adavan , says the neurologist ordered it and wants a CAT scan to check to make sure there is no bleeding. I suggested they put her on a portable EEG video monitor, as these are unique seizures. She said they want to check for bleeding with the CAT scan, then they will knock her out for the night and address the seizures tomorrow. I said it sounded good to me.

She continued to seize. Through the CAT scan (which came back normal), after the CAT scan, and back in bed. I said to the nurse that I wanted to see a doctor, these were atypical seizures and the Atavan didn't seem to be working. At that point everyone seemed to disappear. I don't know if they were huddling, trying to decide what to do, calling the attending neurologist, or what. But I was getting pissed. I hit the staff call button again and told the attendant I wanted to see a doctor in my room. When the resident came back, I asked her point blank what the fuck was going on? I said that these seizures appeared to be grand mals that were not fully developed because part of her brain had been resected. I was not comfortable with her having seizures on and off for an hour straight and I wanted her knocked out.

This went on till about 2:30. They kept telling me they were following protocol, increasing her dosage in steps, and there was no way they could go any faster. I suggested that a Klonapin wafer in my experience seemed to always knock her out. When we were in DC over the summer, after 3 grand mals they dosed her with something and it shut her down immediately. Nothing they were doing seemed to be working. I called Sandra, as I was getting panicky and felt I needed some support. Sandra was smart, she called Susan to drive her down. Otherwise she would have flipped the car on Lincoln Drive. All the while I am asking where the neurologist is on the floor, they said they had him on the phone. Why wasn't someone on the floor? No attending, not even a fellow. I am not happy with them "phoning it in" for my child. I asked them if she needed to code before we got someone who could manage her first hand?

Around 3:30 the ICU team showed up. A resident, a respiratory therapist and a fellow. The fellow had it together, or at least he talked a good game. That was the time we realized we were missing a neurology fellow on our neurology floor. Anyway, the ICU fellow explained about the phase 1 and phase 2 treatments, he took a blood sample to check that she wasn't seizing due to a sodium deficiency (which diminishes the effectiveness of AEDs - Anti-Epileptic Drugs). He noted that the third phase of treatment would involve Phenobarbital, which could limit her ability to breathe, so they would monitor her, be close by, and ready to take her in the ICU if necessary.

Now it is 4:30, she has 8mg of Atavan in her, another drug that was supposed to calm her, as well as Phenobarbital. Which finally did the trick. Sandra and I are exhausted and scared, but together. At this point, the only good news I have is that it is now Thursday and the PREP team meets at 1pm on Thursdays.

I wanna be home....

"I wanna be home with Mommy, I wanna be home with Jesse, I wanna be home with James, I wanna be home without headaches, I wanna be home with you, I wanna be home without needles, I wanna be home without the crying babies, I wanna be home in my room, I wanna be home without doctors, I wanna be home in our house" she cried.

Moving Sideways, With a Heavy Heart

Moving Sideways:

Sandra was determined to get Lauren more active today. She wrote the days goals on the marker board in the room. Stroll around 7th floor, eat/drink and wake up earlier. She did get her in the bath again and managed to shave Lauren's legs. She said that was a struggle. She also got Lauren into the wheelchair and wheeled her around the unit. Not quite strolling, but not bad for a days work. Lauren also managed to eat a little more and to drink some apple juice. It sounds like she is an invalid, but she's not. Her head hurts her and she doesn't want to do anything to aggravate it. But like it or not, everyone thinks she needs to be more active.

I arrived at the hospital this afternoon to find Sandra in the hall. She said an Opthamologist was in the room examining Lauren. Apparently, upon closer examination of her MRIs, it appears her optic nerves are swollen. They said it was not uncommon and it was probably due to having 3 surgeries and grids in for 3 weeks. It may be a contributing factor to the continued headaches, but then again overall swelling due to the resection could be the cause also. Just to be safe they are bringing in an optic nerve specialist to examine her, perhaps tomorrow. Her vision is fine though.

The rehabilitation doctors were here about the same time. They did an exam and noted that she was a good candidate for rehab. She has some minor loss of strength in her left arm. Her left leg is weak and she cannot move it independently. She does have feeling in it though, so she can feel an itch on her ankle, she just has to reach down and pull her leg up to scratch it. They said she will walk, but whether or not she has a limp remains to be seen. She will definitely need an ankle brace but for how long also remains to be seen. They said that if she is released by the neurology team, say tomorrow, they would need 24 hours to pre-certify her, then she could move over to the Seashore House (pediatric rehabilitation hospital) as soon as Friday. When I discussed this with the attending neurologist this evening, she said she wasn't sure if they were ready to act that quickly, but she would have to consult with the team.

Meanwhile, Lauren complains of having seizures. She does not have physical symptoms, but she says she has the feelings. Now whether this is her brain making repairs after the resection, or if she is having real "auras", we will have to see. As of this evening, she is back on her pre-surgical meds and dosage, we will have to see if they become/remain effective or if other medications are necessary.

I speak to clients about "sideways markets" where one day it is up the next day it is down. Or it can even happen intraday, where it starts up, then down, then up, then down and closes flat. That is how I feel about our progress right now. We are moving sideways.

With a Heavy Heart:

I went running this morning on the Forbidden Drive in Valley Green. Actually, I only ran half of the five miles. My arms and legs felt like they weighed a ton. After one mile I stopped to walk, and cry. I would compose myself after a while, then try running again, and eventually I would stop and cry some more. Fortunately at that time in the morning not many people are out, so I wasn't too embarrassed. I told Sandra about it. She said she calls it "running and crying".

I never used to cry about anything. After Spencer died, I find I cry very easily now. My kids love to tease me because I cried at the movie "My Dog Skip". I have figured out that once your heart is broken, it never really heals completely and remains fragile forever.

It was really hard to run, to try to be healthy and strong, with a heavy heart. Everything just feels heavy. I think of Lauren now and how discouraged she must be. She is stuck with a non-stop headache, a gimpy leg, and feels like she is having seizures. I hope her heart is not heavy though, she is too young to have a broken heart.

An Idle Mind is the Devil's Workshop

Lots of impromptu meetings today.

Dr. Delugos stopped by. He noted that everything looks good and asked me if she had any seizures. I said no, but did tell him about something that I discussed with Dr. Mike this morning. Last night when they paused the MRI to inject the contrast dye into Lauren's catheter, Lauren said she felt like she was going to have a seizure, only on the right side this time. This scared me a little bit as epileptics frequently have "auras" before a seizure. Of course, I told her that that was highly unlikely, that she was just tired and that everything would be OK. I then watched her like a hawk, and nothing happened. I did note to both doctors that I had seen her right hand twitch once and drop another time, but that I suspected they were pre-sleep twitches or fatigue. They both agreed with me.

Dr. Delugos said that they would continue Lauren on all her anti-seizure medicines for at least 3 months then start weaning her off one, then another, until she gets down to one medication. He said they would keep her on the one medication indefinitely. If we are lucky, some day we may be able to get her off all meds, but that is a wait and see possibility. Sounds good to me. We can live with one, effective medication.

The pain team was also here. They are moving ahead with Tylenol every 4 hours and Oxycontin as needed proceeded by Zofran (anti-nausea). She will be able to get "rescue doses" of morphine if needed, but they want to get her off the PCA, and eventually off the IV pole.

PT and OT will be visiting her separately, one in the morning and one in the afternoon. This is the routine she will have in the rehabilitation hospital, so they are trying to get her used to it. It is also good to get her moving around, as much as she might hate it. It will get her blood flowing, maybe make her hungry and more in the "real world". They suspect the morphine, lack of food and lack of activity may all be contributing to her headaches.

Just spoke with the Physical Therapist. She said that Lauren was in too much pain to get up and move around, but that they did in bed exercises. She stretched out Lauren's calf and hamstring on the left leg, which she said was pretty tight and they practiced sitting up on the edge of the bed, which Lauren was able to do without a lot of assistance. She was a little shaky and expressed frustration on not being able to do things, but the PT explained to her that it would come, she just needed to retrain her muscles.

She's going to love this. The education specialist was in, she called Lauren's guidance counselor and they are moving ahead with schoolwork for her to do in the hospital. Of course, we were told that she had completed enough of her work to pass the 11th grade, even if she never returned this year. This will complete her coursework though and give her more purpose to her day.

Sara and Ellen are coming in this afternoon to work on her hair and Aunt Julie will be here this afternoon too until Sandra can get off work. In the small world department: Aimee and Amanda know Mike DiLuna from Yale.

A Nice Fellow

Spoke to Dr. Mike DiLuna, he is the Neurosurgery fellow. He reviewed the MRI and said that everything is normal. He noted a little bit of swelling around the recision, but otherwise everything is as to be expected.

Dr. Mike is a nice buy. A big man, who played Yale football, one of our friends noticed that he had awfully large hands for something as delicate as brain surgery. Fortunately, I don't think their hands spend much time in the brain. He is in the last year of his fellowship. I think he is returning to Yale to practice, they must have an affiliated Children's Hospital.

THe Neurosurgery fellowship lasts 9 years. Imagine four years of college, four years of medical school, and then a nine year fellowship making as much, or less than a nurse. Starting your career at 35! Dr. Storm told us the other night that when he was at the end of his fellowship he had neck surgery that caused loss of motion in his left hand. He thought his career was done before it even started. Fortunately, he fully recovered.

Sandra is trying to work today. Looks like I will be working remotely from this laptop.

Making Progress, I Think.

Sandra slept at the hospital last night, tonight is my night. At least I got to see the Oscars, though she didn't miss much.

Lauren got a bath this morning. Sandra said it was a struggle getting her there and in the tub, even though it is only 15 feet away. They didn't have any conditioner to do her hair, but she still has to feel better being in warm water and getting her body clean after 3 weeks. There is only so much you can do with a sponge bath. Her hair is a mess, they didn't shave her, just where the incision was. It is matted though and will need a professional to straighten it out. We should have taken their advice and braided it.

They are trying to figure out what to do with the pain meds. I think they want to get her off the morphine but Oxycodin makes her sick and Dilaudid makes her too itchy. Tonight they are trying Zofran first to avoid nausea, then they are giving her the Oxycodin with Tylenol.

She got an MRI tonight just to check that nothing funny is going on that would cause the continuing head pain. She went down in wheelchair though, while before they were wheeling her down in her bed. So, little by little we are making progress. She has moments when she is sitting up, can smile, and looks great. Other times she is trying to throw up and complaining that her head hurts. We need to get her to eat, she hasn't had anything substancial since Thursday, but she is in too much pain and feels sick to her stomach. This is a cycle we have been through before after the other surgeries. This time recovery is taking a little longer.

Who is this guy Foley anyway?

Better sleeping last night, which is surprizing in light of how much she slept yesterday. Still alot of headache pain, senstivity to light and sound. Seems we have to reorient every shift to enter the room quietly and use hushed tones. And the monitors. I still do not understand why the monitors alarm in the room. If the nurse is in the room, they can see the visual monitors, and if they are in the hall, the monitors alarm there. So why the alarms in the room? To annoy the patient and/or anyone else trying to sleep or be at peace? 99% of the time they are insignificant anyway.

Don't get me wrong, that 1% of the time is a lifesaver. But the alarms should go off in the hall and to the nurses pagers. Not in the room. Particularly, for a patient with light and noise sensitivity.

She has had a Foley catheter in since Friday and is dying to get it out. I think they put it off as she is not fully mobile, is sedated, and because she has been putting out more than she has been taking in (IV & orally). Hopefully that will happen today. They are also putting her on a PCA for pain. That is where you push a botton every time you are in pain and it gives you a small dose. You can do it repeatedly, but it is capped so you cannot overdose. It helps them gauge how much is enough, and also empowers the patient. There is probably a little placebo effect going on too.

We may go back to 7 west today, need to wait and see.

Dr. Storm came in last night. In civies! Not used to seeing him out of scrubs. No real new information, he was just checking in.

Foley is out.

A little business here.

First of all, I, we, want to thank you all for you expressions of support, phone calls, gifts, visits, kind words and love. It has been humbling and comforting. We hope to come up for air soon and to reach out to each of you but for now please bear with us.

Secondly, those of you who have visited know that Lauren has a book/journal that is full of cards, notes, stickers, and well wishes. I have not written in that book, as this is my card to Lauren. Somehow, we will print this thing out for her to keep as her remembrance of her brain surgery. Some of you have joined on as official "followers" of this blog, others are following it anonymously. I would encourage anyone who has not done so already to post a comment for Lauren so that years from now she will be able to revisit your comments and the positive support of those she loves.

Someone's a little cranky. Understandably.

Sandra said it was a difficult night. A lot of crying by Lauren and complaints of head pain. Emotionally she is a wreak, certainly from pain, drugs, hunger and anesthesia. She was crying to Sandra that she will never walk again, she felt like she was dying, etc. Poor baby, everything is as well or better than expected. Her road to recovery will include emotional and spiritual recovery as well as injury and rehabilitation.

She has already run off 2 visitors, including poor Grandma, so call first.

She had an MRI this morning. It is normal. She has some slight swelling, but nothing unusual. We ran through the MRI images with the Neurologists. We could see white areas where they removed the gray matter. The white represents brain fluid filling the void. Really a very small area compared to the rest of the brain.

We will remain in the PICU throughout the weekend and Monday will either return to 7 west or to the Seashore House.

Another day at the hospital

Got to the hospital yesterday at noon to consult with doctors about the surgery. Just got home. Lauren's been there since February 15th.

Dear BFF's, Surgery a piece of cake, LOL Lauren

Lauren got out of surgery around 9 pm. This picture was taken around 9:30















Her head hurts, but it is incisional. The deep pain headaches are gone as the grids have been removed.

When we first got to the room, she was miserable. They had her on 2 mg of morphine when she had been getting 5 mg pre-surgery. So they gave her an additional 5mg, then another 2mg. She is happy now, and fiesty.

Dr. Storm said the surgery went really well. He said that he got the hot spots and then some and all without losing much function. Through the microsensors they get feedback readings of 0 -100. He said he would take out the hot spots (down to a 0 reading if necessary) plus adjacent material until he got to 50%, from which he felt someone could recover. He took out all the material and even in the hot spots never went lower than a 40%.

She moved her left shoulder, and he was encouraged about her left leg. He seemed encouraged, and with his confidence, gave us confidence.

At least I didn't see him on Walnut Street!

So, I go and get my running clothes on and head to the elevator. I see Dr. Storm ahead of me in the hall and I'm thinking... "hey, shouldn't you be operating or something?". I know it was him, because he wears a distintive black Wake Forest surgeon's skull cap (did I mention he was a NCAA fan?). I hung back because I figured these operations take a long time, there is a lot of prep work, and I'm sure these guys scrub in and out all the time. After all, this was about 4:30 and she went off to surgery around 3 pm.

When I got back from running, around 5:30, our crew in the Surgery Waiting Room tell me that he didn't scrub-in till 5 pm. There was a lot of prep work and he wasn't there for it. It's now 7:50 and they are still going strong. Everyone is marveling at how long it is taking. I say, take your time. Please.

I keep going back and and forth with our friend Carley about our room in the PICU. They keep saying they are trying to get us a single room on 7 South, but then the charge nurse comes into the waiting room to tell us we will be on 7 east. I say that is not acceptable, as our son died there in 1993. Sandra starts crying and gets up to leave and the charge nurse hugs her and says we will NOT be on 7 east.

Once she gets out of surgery, she will go back to our old room in the PICU, 7S08.

Neurosurgeons vs the Neurologists

She went into surgery at 3 pm. Later than we anticipated. She spent too long in the PACU (Pre-op staging area), about 1.5 hours. Don't know why, maybe they had a prior surgery that took longer than anticipated. It made Lauren anxious though. It's better to be the first case.

Dr. Storm presented us with a revised surgical plan. A scaled down version of the full resection. He felt it would take care of all the hot spots and reduce the impact on her mobility. Who are we to argue with these guys? It's the Neurosurgeons vs the Neurologists. Both are acting in our best interests but they are coming at it from differnt directions. Now that I think about it, Dr. Storm is going in there prepared to do the maximum, but as he resects, he will start small and work his way up. They have micro sensors all over the place, so as he resects, he can track functional loss. At this point, I'm on the Neurosurgeon's team.

We are supposed to go to the PICU after this. Rumor had it that we may end up in a double room and as far as I can tell all the doubles are on 7 east. Spencer died on 7 east back when it was the Oncology floor. We are lobbying to avoid going there at all costs.

I need to go running, everyone's getting on my nerves.

P.S.

Since we have all the information necessary, Lauren is back on her meds, seizure free, and disconnected from all the EEG equipment. In other words, after 18 days, she can get out of bed and walk to the bathroom! It's the little things...

Hoping for the Best

Spoke to the neurosurgeons. Clearly, they are disappointed with the results. You can tell that they do not like being put in the position of "doing harm", but it seems to be better to attempt to "get it right the first time" than to pursue a graduated approach.

Multiple surgeries increase the chance of infection or other difficulties and scar tissue from prior surgeries make it subsequent ones less sucessful. They also believe that impact of the shoulder will be minimal. They are more concerned with her leg. She will require rehabilitation and she may have a limp. It is a risk/reward decision.

This is our best shot at a cure. At 16, she is young, resilient, strong, and still developing. We are putting our faith in a better outcome than the doctors are predicting (their worst case scenario) and a good rehabilitation (see Adam Taliaferro).

Surgery will be tomorrow. It is currently scheduled for 1 pm but it was clear Jay would like to do it sooner. We will probably be in the PICU throughout the weekend and then to the Seashore House, CHoP's pediatric rehab.

Not ideal

The report is that the seizures are to be coming from both sensory and motor areas in the right hemisphere of Lauren's brain.

There are 3 options.

1) Do nothing, remove the grids but nothing else and go back to drug therapy. Seizures will continue, perhaps get worse as she ages, and hope for a miracle drug. No one supports that idea.

2) Remove a small portion with a less than 10% chance of being seizure free. There would be little loss of senses or strength in her left limbs. She would lose her ability to "sense" seizures coming on which could be dangerous. More could be taken out later if necessary.

3) Remove a larger area that would include all the "hot spots" as well as the dysplasia. This would give her a 50-70% chance of being seizure free. She will lose senses and strength in her left (non-dominant) shoulder and leg. She will need to go to rehabilitation to regain as much function as possible, but most likely will always need to wear an ankle brace. She will be able to walk, but may have a limp. Time will tell depending on what they see when they operate, how much they actualy take out, and how well she rehabilitates.

Lauren wants to pursue option 3 as it gives her the best chance for a seizure free life. We have been meeting with Neurologists and a Physical Therapist all day and are waiting to hear from Dr. Storm tonight. He has been busy all day with surgery.

Alot, alot, to consider. Too much to cover now. We are following Lauren's lead and waiting to meet with the Neurosurgeon. I'll follow up later.

Thanks to you all for your concern and well wishes.

Quite a lot to talk about

Jessica spent the night again last night (Tuesday). She and Lauren stayed up late, started to watch a movie, but turned it off to talk.

Lauren didn't want us to go last night, she was afraid of having another seizure. Jessica was very quiet and gentle as she explained that the stimulation caused the seizures, and that put Lauren's mind at ease. She eventually let Sandra and I go. By the time we got home we were exhausted.

We woke up with no calls or messages from the hospital, so we ran this morning in Valley Green. It was nice to run together again. When we made it back to the car we had messages from Jess that Lauren had a grand mal at 9:10. Jess said she thought it was a progressive one, which is good. We are looking for ones that start small and get bigger. Turns out she had a second one in the 11 am hour, as Sandra was taking the train to the hospital. Once Sandra arrived and spoke to the neurologist, they determined that if Lauren had another grand mal they would sedate her with Versed or Atavan. I remember someone saying to me that if a patient has 3 grand mals in 24 hours, they sedate them. So far, no more seizures.

I think at this point they have all the information they need. Sandra and I were talking about it this morning. Ideally, they would have naturally progressive seizures as your medication wore off. In Lauren's case, she went from 0 to 100. Straight to grand mals, or more specifically, straight from insignificant EEGs to huge, wild, distorted ones. That is why they put her back on Dilantin, so they could find some middle ground. Of course, while they waited, they took the aggressive approach and did the stimulation. I suppose if we had some smaller, progressive seizures between now and when the PREP team meets on Thursday, that wouldn't hurt.

Tommorrow afternoon the PREP team (20+ people) will meet to review the case and present an action plan. Word on the street is that if they remove what they need to to give Lauren the best hope of being seizure free, it will impact her left shoulder and leg. To what extent we do not know yet. Could be numbness, could be limited range of motion. We will have to see. Hopefully, rehabilitation will be effective but we haven't discussed that with them yet. I left work early so that we could brainstorm (no pun intended) questions. Lots to talk about and hard decisions to make.

Looks like we are on track for surgery Friday. Definitely to remove the grids, maybe to remove the problem area. Titanium plate, PICU, then probably a couple more days of antibiotics.

...so overwhelmingly intense

Last night Lauren was so animated. There were a lot of visitors and she seemed very happy. Sandra confided to me though that later, after everyone was gone, Lauren had a meltdown. She said it happens a lot when it is just her and Lauren together. Lauren will break down to her Mommy, cry and say that she wants to leave. I think those are the hardest times for her, late at night and post-seizure. Although she is "getting used" to her environment, it is still a difficult place to be.

The night before, Jessica spent the night and got a taste of "sleeping" in the hospital. Lauren complained of pain in her ribs and tightness in her chest, prompting a portable chest x-ray in the middle of the night. It turned out to be nothing (probably too long in the bed), but they have to rule out pneumonia or an embolism.

Dr. Marsh, the neurologist who has rotated on for Dr. Clancy (new month, new attending, and they threw all our food out of the refrigerator!) said that he and Dr. Dlugos (our primary neurologist) were thinking of stimulating Lauren's brain to confirm some information on the seizures and to pinpoint motor areas. Basically, they will use the electrodes to produce electrical activity rather than monitor it. By putting electrical stimulation in different electrodes they hope to see which ones trigger a seizure and what parts of the body are affected.

This morning Lauren had another grand mal, out of nowhere. She called it herself. She looked at her Mom and said "I'm going to have a grand mal". It probably lasted 45 seconds, but her lips turned blue, which we have never seen before. When Sandra got a hold of me, she was clearly shaken. Lauren had what has become her typical post grand mal reaction, which is similar to migrane symptoms. No light, no sound, give me morphine and let me sleep. Sandra said it would probably postpone the stimulation, so I went to the office and tried to work.

Turns out Lauren recovered a couple of hours later and Sandra called me to say they were going to do the stimulation at 2 pm. When I walked into Lauren's hospital room it was standing room only with doctors, residents and EEG techs. They basically put plugs into jacks in a control panel reminiscent of an old fashioned switchboard, checked it on the EEG monitor, and then applied stimulation (ie. electricity, which freaks me out; as advanced as our medicine is, some of it seems awfully barbaric). They would ask Lauren to roll her shoulder or wriggle her toes and see what sort of reaction she had. Sometimes there was no reaction, sometimes a tingling, once the leg involuntarily bent at the knee and moved towards her chest, and lastly she went into a grand mal. Once we got her stabilized, the neurologists said they got exactly what they wanted, thanked us and left with their entourage. Dr. Marsh did come in 10 minutes later to check on Lauren and confirmed that they were upping her Dilantin to 50 mg am and 100 mg pm. He said that the PREP team would discuss her case Thursday afternoon and said that surgery could be done as early as Friday.

Sometimes this shit is just so overwhelimgly intense. Sandra and I were both shaken. Jessica saw her first grand mal and was afraid she was going to pass out. When I left to come here and update the blog, they were comforting Lauren who was wimpering that her head hurt. I just couldn't take it, I had to leave.

Loretta, Ashley and Andrea

Loretta is with environmental services, Ashley is an EEG tech, and Andrea is the child life (play) therapist. They were all hanging out with Lauren & Jessica today, watching YouTube videos and listening to music. We are starting to develop a whole new network of friends here at CHoP.

Lauren is generally in good spirits. Even getting a little rammy.

The baby with Lauren is Gabriel. He is 6 months old but stopped growing at 3 months.

Our room is totally wired for video and sound. Now that we are two weeks in, we tend to forget these things and the filter is starting to slip. Lauren may go home with another family after this. Her diet is almost exclusively Slim Jims and Fruit Roll Ups. That's a balanced diet right?

We want to thank all of you for your concern and well wishes. The gifts, visits and meals are all greatly appreciated. Even following the blog is appreciated, it's nice to know people care.