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.