Sweet 17!

Jessica, Chris, Lauren, Sandra and James






What better time to provide an update than Lauren's 17th birthday? Its been a long time since I posted last. People keep asking me to provide updates, but literally, no news is good news.

Things are good. Lauren went to Camp Cranium and loved it. Looks like she will be attending again next year. Since the school year has ended, Lauren has been studying for the ACT's, catching up on missed Algebra II online, babysitting and generally enjoying her summer.

Her walking is about 95%. If you saw her walking you probably wouldn't be able to notice anything out of the ordinary. She had the wheelchair for about three weeks after school was out but really never used it at all. She used the cane a little bit but abandoned it quickly. The MAFO lasted about a month. Now she uses nothing. I don't even know where the MAFO at this point (just informed it is in her laundry basket). When she gets tired she has a slight limp, but like I said, if you didn't know you wouldn't notice.

Probably, some of the most traumatic events so far this summer have been swim meets. At 16, Lauren was in the Unlimited events and even occasionally went to practice. Face it, now that the kids are getting older, their dedication to the team is not what it used to be. And frankly, we have not been that strict with their participation. Teens are hard to motivate to jump into a cold pool at 9 am on a summer morning. Anyway, we were simply proud of Lauren for competing. She finished respectably, nowhere to her championship form when she was younger, but she did it. I suppose it was the spectacle of the whole thing. Getting in the pool and doing it in front of the whole community, many of whom read this blog. Pity, pride, tears, exhaustion. She did it, she has done it, we are so proud of her.

She has been done with Dilantin for about a week now. We slowly weaned her, 50 mg at a time, every two weeks. Now she takes 200 mg of Vimpat and 60 mg of Phenobarbital every morning and night. No seizures if she sticks with her meds, which she has been better about, especially now that we have a fixed dose and are not tapering. Her next appointment with the Neurologist, Dr. Dlugos, is in September. I assume at that time he will try tapering the Phenobarbital. The analogy that comes to mind is the old western where the poker game goes bad and the cowboy has to back out of the saloon with his hands on his pistols. We are backing out of the saloon.

The hospital bills are done. We haven't gotten one since the $453,000 one. I must assume that either the Children's Seashore House is either terrible at billing, or a case manager at Cigna has taken over. The man behind the curtain is working the levers.

Call If Any Seizures, Don't Panic!

First week in school is complete. Monday was a big day. Lauren spent the whole day at school and although she had a wheelchair there to use, she didn't. She relied on her cane. That evening we went to the Phillies game. The tickets were from CHoP. We were part of Lidge's Legion. The kids got hats and went to the field during batting practice to meet Brad Lidge and Charlie Manuel. Pretty cool. The odd part was that since they were from the Children's Hospital, you would think they would have special accommodations for sick or handicapped kids. They didn't. The seats were on the top row. So needless to say, Lauren walked a lot and overdid it. Tuesday she went to school, but we had to pick her up early as she had a headache and leg pain. Wednesday we were at the hospital all day with follow up appointments, Thursday and Friday she was fine. She took the small bus home on Wednesday so she got door to door service, but she was horrified by it and begged to be allowed to take the regular bus. Fine by us.

Our day at the hospital on Wednesday was primarily to follow up with our primary Neurologist, Dr. Dlugos and the nurse practitioner we have been working with for years, Barbara Beck. Barbara examined Lauren and was delighted with her progress. She wrote new prescriptions for Lauren, who is now on Dilantin, Phenobarbital and Vimpat. The first two are old school drugs and the latter is a new age one. Barbara has us weaning Lauren off of the Dilantin over the next 11 weeks. This is how we do it, we slowly wean her off her drugs. We should be completely off the Dilantin by mid-July, then we regroup and consider what to do next. The instructions at the bottom of the drug protocol says to "call if there are any seizures, don't panic!"

We discussed the breakthrough seizures she had in the hospital as well as the small one she had at home when she missed an evening dose of her pills. Both he and Barbara said not to be concerned about them. Dr. Dlugos said that our treatment plan is, and always has been, to balance the treatment of seizures with side effects. We did that with the surgery, taking as much of the dysplasia as possible without permanently crippling Lauren; and we will be doing that with the drugs, weaning her off as many as possible while keeping her seizure free. He confirmed that the biopsy of the resection showed abnormalities. If we could get her down to one drug that didn't have a lot of harmful side effects that would keep her seizure free for the rest of her life, I would take that. Dr. Dlugos said it would be two years before we know exactly where we stand.

After our meeting with them, we went over to Seashore House to visit with the Therapists. It was fun for all. I wasn't there but on her last day, two Fridays ago, there were a lot of tearful goodbyes. The Therapists loved seeing Lauren in her skinny jeans rather than loose sweatpants. We then went to McDonalds at CHoP, which effectively killed the day. Next week we meet with Dr. Storm for a follow up with him.

Last Thursday, Sandra took Lauren to Moss Rehabilitation Hospital in Elkins Park to be evaluated for outpatient therapy. This hospital is about five miles from our house, so Lauren will go twice a week after school. Pretty convenient and Moss has an outstanding reputation. Lauren's new PT is named Matt. He spoke almost exclusively to Lauren (which we prefer), and he noted that he would still work on her leg, but also on total body strength like her thighs, hips and core. He will consult with Ashley at Seashore House to coordinate their treatment plans.

Back to School

Friday, April 30th will be Lauren's last day at the Children's Seashore House. Which, by the way, is nowhere near the shore. It's in west Philadelphia, right behind Children's Hospital. It did have its beginnings at the shore though, Atlantic City I think.

Since we have not really trailed Lauren for the past two weeks while she has been home, we decided it would be a good idea for me to follow her today through PT & OT to see how she has progressed, discuss things with her therapists, and try to determine what issues we may want to discuss with her doctors. We have follow up visits scheduled over the next several weeks with the Opthamologist, Neurosurgeon, Neurologists and the Physiatrist (rehabilitation doctor). Sandra will trail her on Friday and see to her discharge from the Day Hospital.

Both Kate (OT) and Ashley(PT) rave about Lauren's progress. This morning in OT they tested her eye/hand coordination, which they said she did very well with. It is mostly to test dominent hand ability, which was never an issue for Lauren as she is right handed. The test also provides hard test scores which they can use later if they need to. She did some more hand bike exercises, and in the second half-hour session she did arm and upper body exercises with dumbbells. Kate said once she is discharged, Lauren will not need any outpatient Occupational Therapy.

Ashley said that she is very impressed with Lauren's progress. She said that she will discharge her with an articulated ankle-foot orthotic (AFO), but that Lauren really may not need to use it all the time. She said she could see Lauren not needing to use it at all one day, or as one of the Physiatrist's said, she may use it at her discretion. Perhaps if she is going to be hiking or playing basketball, but not necessarily when she is going to the beach or wearing a dress. Ashley said Lauren has regained her ability to flex her ankle up and down (like pushing on or off the gas pedal in a car) and that the tone (stiffness) in her left calf is almost all gone. She is still a little at risk for twisting her ankle, as she tends to roll to the outside of her foot, but Ashley said that they could continue to work on that in outpatient therapy. The fact that she has come so far in other areas is a great sign regarding her ability to overcome this rolling too. Ashley is going to recommend Lauren get outpatient PT 2-3 days a week, and both Ashley and Kate are going to release her with home exercises/activities.

I asked Ashley if we were done brain mapping at this point and were now just working on the physical aspects of Lauren's injury and she confirmed that while brain mapping (healing, reconnecting, reallocating command) will continue to take place, the lions share of it was done. Now it is just a matter of continuing daily activities and becoming as strong and as fluid as she once was.

Regarding seizures, she had a small one last weekend when she missed her medication one evening. She told Sandra about it, that it was a small one in her leg, but no one saw it. James was sleeping with her and it didn't wake him. We were a little distraught, but Barbara Beck, our neurology nurse practitioner said not to worry about it. She said that we did the best we could regarding the resection, addressing the problem with the least amount of damage. Now we need to rehabilitate Lauren to get her back to normal with her mobility. The last piece will be evaluating where we stand with the epilepsy, her seizures, and what medications she will need to take and for how long. As it has been for the last nine years, this is a long process with no certain outcomes.

Lauren is back to school on Monday, May 3rd. Her reintegration to school and her routine will take time, but I am confident the school will do an excellent job accommodating her. The more we get back to normal, the more Lauren will develop the strength and skills to resume her life as normal.

Homeward Bound

Lauren will be coming home tomorrow.

She will still commute to the Seashore House for all day rehabilitation for the next 3-4 weeks. Check the blog from time to time for updates.

Thanks for caring.

The Heavens

PS: The bill for February 15 - March 11th at Children's Hospital, not including doctors (surgeons, neurologists, etc.) = $454,000. Staggering. Soon I will do a post breaking it down. That doesn't include the month we have been at Seashore House, or the month of Day Hospital we will have at the Seashore House going forward, or the Rehabilitation doctors.

Despite the healthcare debate, I have no commentary. Perhaps it is because we have excellent primary insurance as well as secondary insurance and will probably have no out of pocket expenses (other than our monthly premiums).

"Walk With The Cups, Grasshopper"

I trailed Lauren in PT & OT today. Nothing dramatically different in OT. More games like Scategories, pedaling the hand bike while standing, and best of all, her and I hitting a beach ball back and forth to each other while Lauren was sitting balanced on top of a big therapy ball. Fast paced lunging on a squishy ball that a week ago she had a hard time just sitting on top of. I think we got up to 27 without dropping, although getting to that point involved hitting a lot of stuff, including the ceiling, equipment, and an OT intern in the face. Kate said she is doing well and that they are working on adding endurance to her fine motor skills activity.

A lot of new stuff in PT (at least for me). First she was on the elliptical. You could see in 10 minutes of repetition how much more smoothly her left leg moved. I reminded her that 4 weeks ago she was suspended in a monkey harness, just trying to walk on a slow moving treadmill. There were a lot of those reminders today, most of which she did not remember. I told her that was because she was on drugs then. After the elliptical, Lauren went on a mat and both forward and side kicked a weighted foam pad that was her size (see Kung Fu with David Carradine). She did well, I wouldn't want to meet her in a dark alley! Lastly, Ashley had her practice falling, both forward and sideways onto a thick floor pad. That was so she could practice "going down" without hurting herself. Ashley said that the Drs. Kim still had not reconciled on the Botox, she said that she and the Ms. Dr. Kim are for it, but need to confirm with Mr. Dr. Kim.

The afternoon session of PT was busy. Lauren walked on a slow treadmill without her MAFO (she calls it a MoFo), just in stocking feet. The MAFO (Molded Ankle-Foot Orthotic) is the lavender brace with hot pink straps. It keeps her foot perpendicular to her leg, which tends to go toes down. So this exercise is designed to strengthen her ankle and give her more ankle control. Ashley then took her on the mat and had her do small exercises without the MAFO on, like lifting her toes without lifting her ankle, and lifting her heel without lifting her toes. The next activity involved Ashley placing plastic cups between the parallel bars. 12 of them, staggered, so that Lauren had to lift each of her feet to walk over them and down the bars. She did this back and forth four times. Then Ashley placed 10" high traffic cones in a triangular pattern in front of Lauren and she had to lift her right leg and touch the top of each of the cones lightly, then return her leg and do the same with the left leg. She had to alternate each leg and do four repetitions, then go back to the parallel bars, walk with the cups four times, back to the cones for four repetitions. She must have done really well because then Ashley let her skip down the hall. Or rather, Ashley MADE her skip down the hall, which takes coordination, strength, and balance. The hall is a long one, right in front of the surgical waiting room where we spent so many tense hours waiting to hear from the surgeons. Irony? Synergy? Closure? I can't find the right word for how odd that felt.

We are still on track for a Tuesday, April 13th release. I found out today that they discharge them in the morning, so she will have Tuesday off before starting at the Day Hospital on Wednesday.

Speaks For Herself

Found this on Lauren's Facebook page:

When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.

Peter Marshall (American TV game show host, b.1927)

Who knew he waxed poetic?

The California Girl and the Spit-Bull

O.K., first off, there are two attending rehabilitation physicians at the Children's Seashore House. One male, one female, both Korean and both named Dr. Kim. No relation. Talk about confusing.

Anyways, the Mr. Dr. Kim calls Lauren his "California Girl". I think it is because she is long and willowy, laid back, and generally easy to get along with. However, Jessica once referred to Lauren as a spit-bull. She accidentally combined spitfire (the british fighter aircraft from WWII) and pit bull. It was during a basketball game, and someone angered Lauren and she got this determined look on her face like someone was going to pay! Lauren used to get that look when swimming the backstroke, if you got her into her competitive mode, there was no beating her. That is the contradiction that is Lauren, she looks laid back but will really fight when challenged. A lot of people at Children's Seashore House have noticed those qualities in Lauren and love her for it.

Tonight I saw her walk without the cane.

It wasn't long. It wasn't fast. But it happened. Sandra says they are still a little concerned about the "tone" (muscle stiffness) in her left leg. They may inject her calf with Botox after all. The Drs. Kim need to consult to determine if that is the way they want to go. That can happen when she is in the Day Hospital, after she is discharged on the 13th (still tentative).

Sandra, Jessica and I had a consult with the Psychology Intern this evening. Basically it was a case management meeting. Call it an exit interview. She said Lauren is strong, resilient and in good spirits. She is forward looking and positive. She gets cranky and frustrated, but is getting along nicely. We didn't talk about seizures, other than to note that Lauren does not seem concerned about them. We all agreed that priority one is to get Lauren rehabilitated, then start looking into the effects the surgery has had on her seizures. We also agreed that if Lauren were to have seizures, we may need to re-enlist psychology.

We also saw the neurosurgery fellow, Dr. Mike in the cafeteria (Lauren, Jess, Sandra and I had a nice family dinner there). He asked some hard questions. Like have you had any funny feelings. Lauren said sometimes, but they were not seizure like. Probably more nerve related than seizure related. Then he got Lauren to confess that getting her hair combed out was more painful than the brain surgery.

Butler Advances to the Championship!

We already went onto the Butler Bookstore website to check out the t-shirt selection.

Full Time Work

Today I got to spend the whole day with Lauren. It started early, around 7:30 am the Phlebotomist (big word for "blood letter") took blood. They do that on a regular basis to monitor her drug levels. What a way to start your day, with a needle. Then the nurse's aid came in to do her vitals; blood pressure, temperature and heart rate. We were up early, but did not have OT until 10 am so she napped a little, I got dressed and ordered us some breakfast. At 9am she got motivated, got her self dressed in bed then got up and went to the bathroom with the cane. She was a little tipsy free-standing at the sink to brush her hair and teeth, but she got it done.

Her schedule for today was OT at 10, PT at 11, OT at 11:30, Lunch at 12, School at one, PT at two, and Group Session from 3-4. They switch these sessions up an hour of one, then a half an hour of the next, then a half an hour of the first, then and hour of the second. They switch which ones they start with, throw in music, art, psych, pool, field trips. They keep them busy and on their toes.

Starting the day in OT, Kimberley had her sitting on a large rubber ball. While I spotted her, she had to reach for objects that the therapist was holding. Up, down, right, left, forward, back. Definitely a difficult balancing act. Next she had to throw a Velcro ball at a Velcro target while sitting on the ball. A little easier, but it was interesting to see how they work on these skill sets.

You may notice I talk about how interesting things are. Sandra pointed out that it is interesting when you watch it on the Discovery Channel. When it is your child it goes beyond interesting. Sandra keeps me grounded.

Anyway, then we got into an competitive game of UNO. First the three of us, then me and Lauren, while we stood up and played (practicing standing and balance while not focusing on it). She beat me in two or three games, I took the last one with a double reverse to UNO then out. To reward her for beating me I made her wear an ICarley sticker.

After an hour of OT we went to PT to work with Natalie for a half an hour. She had Lauren stand in front of a mirrored wall, throw a rubber playground ball (remember kickball) at the wall, then catch it on the bounce. It seemed too easy, so she tried putting her on a 5" thick cushion to do it, but it was too soft and she couldn't do it. So she then put her on a firmer, thinner one. The object was to get her used to staying balanced without thinking about it. Lastly, Natalie put Lauren on an inclined board on rollers and made her push herself up with her bad leg. It was very strenuous and at times the Clonus would kick in. She did about 7 repetitions, rested, 5 more, rested, then 3, rested.

Kimberley then took her back to OT where we played the game Operation. Lauren and I competed, but after a while she just did it herself. Kimberley made her alternate with her right and left hands. Her right hand was better, but not much better than you would expect from her dominate hand. To finish off, Kimberley had her pedal the bike with her hands for 12 minutes. Dr. Kim came in at that time too and evaluated her. He seemed pleased.

We had a McDonald's lunch and napped for about 20 minutes, then she went off to school. She walked with the cane all the way from her room to the school room, which is about 140 feet. Pretty good. She said she worked on Environmental Science. A Neurologist came by during school to check her out. Apparently the Rehabilitation service was concerned about abnormal eye movements. He examined her and asked her about it. She said her vision was fine, but sometimes after she took her medicine her eyes would burn for a short while. He said her vision was perfect, the burning was a common side effect of the Dilantin and that it was not unusual.

After school she went back to PT where Jackie put 14 lbs. of weights over her shoulders and made her step up on a step between the parallel bars, then bring her other foot up, then step back down and bring her other foot down too. Over and over. The next exercise was sitting in the wheelchair, getting up, sitting, etc. And finally she had to side step her way along the parallel bars. All of these exercises were with the weights on. Next was the treadmill, she put her left foot on the unmoving side rail of the treadmill and walked slowly on the moving portion with her right foot. Jackie said it looked easy, but noted that it forced her to keep all her weight on her left leg. After about 10 minutes, she put both feet on the moving surface and walked for about 10 minutes more. The last exercise involved getting on her knees on a mat (a soft one that is harder to balance on), Jackie faced her, also on her knees, and holding each others shoulders, they "walked" forwards and backwards across the mat. Then Lauren had to crawl forwards and backwards across the mat by herself and to finish up, Jackie had her stay on her knees and reach to touch Jackie's hands with her opposite hand, high/low, right/left. She really got a workout.

The last activity for the day was Group Session, when all the kids get together and do social activities. Today they made pizza. I am enjoying it right now while Lauren and Sandra are outside on the play deck enjoying the sun. Then I'm going home, all this exercise has me exhausted.

No News is Good News

It's Thursday night and it seems like forever since I've stayed at the hospital. Good news is tomorrow is Good Friday and I will not be working, so I can spend some quality time with Lauren during her full work day and see first hand what she is doing and how she is progressing. The bad news is that Ashley and Kate are both on vacation, so they won't be here. Well at least I will get to meet some of the other PT & OT staff.

My understanding is that things are going well. She works alone with her therapists and her days are long and hard, so by the end of the day she is not eager to bring us up to speed. Sounds like normal teen behavior to me. Her latest achievements include a lot of work with a four legged cane. She still uses the wheelchair and walker, but is doing a lot of work with the cane. Lauren told me that she has been swimming a lot now without a noodle under her (no floatation device) to include freestyle, backstroke (her best) and breaststroke, which is the best for her as it involves symmetrical (mirrored) movements. She told me she played volleyball in the community group. I asked if they were in wheelchairs? She said no. On walkers? No. I can't imagine she was able to balance, lean and lunge as volleyball would require, so I'll have to see for myself. Somebody asked me why she does art and music therapy. I suppose the easy answer is that it gives her something to do other than physical exercise, but I am sure there is a medical component too. Perhaps to make sure rewiring does not overtake creative space, or perhaps just total, well balanced cognitive stimulation.

Today they went on a field trip to the Vet hospital. I thought it was a funny place to visit, going to the V.A. hospital down the street. Turns out they went to the Veterinary Hospital at the University of Pennsylvania. Definitely more entertaining than the Veterans Administration hospital!


Lauren was home last Sunday for a 6 hour pass. I imagine the six hour number is insurance and reimbursement driven, but for the first time I think six hours was enough. Here is a picture of Lauren with her friends Tori and Michael.


I was a madman getting ready. I made a big sign on the garage saying Welcome Home Lauren!, started a fire, and baked brownies. Felt like I was trying to sell the house. She got a little emotional when she first walked into the house. We spent the first 2-3 hours as a family, Just Sandra, Jess, Lauren, James and me. She spent a little time in the living room by the fire, ventured into the kitchen for a while for a drink and some brownies, then Jessica piggybacked her up the stairs to her room where they spent an hour going through all the gifts, cards and mementos you beautiful people provided her. Eventually some additional friends showed up and we had a pot luck dinner. Jessica took her back to the hospital and spent the night with her. Lauren was sad, cried a little, but no major breakdowns. We hope to do it all again this Sunday for Easter. No baking or cooking though, a pizza and beer Easter this year.

Still no seizures since that first week post-surgery. She is on medication. We are weaning her off of her Zonagran, actually I think she is off it by now. She is still on Dilantin and Phenobarbital, both of which are old school meds that have been around forever and which we would most like to have her off of completely. The third med is Vinpat, a new age medicine that is less harsh. I am not sure how they will approach weaning her meds, but I would imagine they would get rid of the first two first. We haven't really had that discussion with the Neurologists yet. I think they want everyone to focus on rehabilitation first.

So the countdown begins, even though Lauren told me tonight that she did not want to do an official countdown. 12 days to the 13th, our scheduled release date. Her application for Camp Cranium is in, I spoke to the Director and she is on the list. I should have more to report tomorrow after spending the day here and observing all the activities.

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.