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.
Monday, April 26, 2010
Monday, April 12, 2010
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).
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).
Friday, April 9, 2010
"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.
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?
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?
Wednesday, April 7, 2010
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.
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.
Saturday, April 3, 2010
Butler Advances to the Championship!
We already went onto the Butler Bookstore website to check out the t-shirt selection.
Friday, April 2, 2010
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.
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.
Thursday, April 1, 2010
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.
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.
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