It's the start of another week of therapy and recovery. Emily spent a full hour in the light gate at Craig on Friday. The light gate is a treadmill with a harness that can be adjusted so that she's bearing all of her weight but there's no risk of falling. She did really, really well. When she and I did her exercises at home on Saturday, I could really see a difference in her strength, especially in her right leg. Her right arm continues to be a problem, but we just have to keep working on it. She has a new arm brace that makes her look like the bionic woman!
Emily started writing again over the weekend. She had nearly completed a horror novella at the time of the accident (41 pages down, 9 more to reach her 50-page contract commitment). She's re-read it several times in the last week and on Saturday afternoon she sat down with her recorder and started dictating - dialogue and everything. Ken and I think it's a really good sign. We have another big meeting at Craig tomorrow afternoon, but starting next week we're planning to get her to Writing Club on Tuesday afternoons in addition to Philosophy Club on Thursdays. The Mercury Cafe in downtown has Youth Slam Poetry the second Sunday of every month and that's on our schedule for November 11.
She's been working a lot on reading comprehension with her speech therapist, and she's been reading a lot at home - probably finishes a book a week plus several short stories from her Science Fiction & Fantasy magazine. That's pretty comparable to before the accident, so she's healing. It's just a very slow process.
Monday, October 29, 2007
Wednesday, October 24, 2007
Over the last several days the Craig staff has, to their credit, stepped up to the plate and acknowledged the mistakes that were made last week. I do feel the need to respond to Sigrid's post, which seems to reflect some of the "preconceived notions" that are causing us problems at Craig. Neither Ken or I expected Emily to go back to school at anything even approaching full-time status in January. What we had hoped for is a plan. Our vision of that plan involved Emily working either with the Craig teacher or a homebound educator to review and complete her second semester 10th-grade academics. We had hoped that Emily might be able to reintegrate into her creative writing class at DSA a couple of days a week. In our view this would have allowed her to start handling the multiple distractions of a classroom in a class that didn't require her to take notes, follow lectures, memorize facts, or take tests. Maybe this was realistic, maybe it wasn't - but the fact that a decision was made without our ability to have a clear voice in that decision was, and continues to be, disturbing. This is all water under the bridge and we're going cautiously forward.
We met today with our family services representative at Craig and set out what we need to see from the therapy team in terms of a baseline assessment, a real plan for reintegrating Em in school - simply saying "next Fall" doesn't mean much especially when we know we need to navigate the bureaucracy that is DPS, and an answer to how we're going to address communication issues. A lot of damage has been done in terms of our faith and trust in our therapy team.
In the meantime Em continues to recover. She consistently walks almost 100 feet on her therapy days - still in the parallel bars because they keep her safe, but without any assistance. We're starting to work on maximizing technique so there's not so much brute muscle required. It's a lot like learning to ski the bumps at Emily's level - you can't muscle your way through, you need to finesse them. She also has started working on stairs. Her right arm continues to be a problem - but we're getting really good response to weight-bearing exercises and she was able to straighten her fingers on her own for the first time on Monday. Her vision also continues to improve. A few weeks ago when we would work on lateral movement you could literally see her eye muscles struggling to hold the position. Now when you have her look left or right, the eyes have symmetrical movement and the right eye holds the position. We've also seen some changes in pupil size in response to light - not the immediate reaction you see in an uninjured eye, but definite dilation/contraction of the pupil.
Most importantly from our perspective her performance on her various cognitive/attention/processing speed exercises continues to improve. Over the last few days I've watched her very successfully repeat several exercises that she struggled with just a few weeks ago. She's showing good recovery of her ability to think "flexibly" and she's starting to have real success with multi-part reasoning exercises.
We met today with our family services representative at Craig and set out what we need to see from the therapy team in terms of a baseline assessment, a real plan for reintegrating Em in school - simply saying "next Fall" doesn't mean much especially when we know we need to navigate the bureaucracy that is DPS, and an answer to how we're going to address communication issues. A lot of damage has been done in terms of our faith and trust in our therapy team.
In the meantime Em continues to recover. She consistently walks almost 100 feet on her therapy days - still in the parallel bars because they keep her safe, but without any assistance. We're starting to work on maximizing technique so there's not so much brute muscle required. It's a lot like learning to ski the bumps at Emily's level - you can't muscle your way through, you need to finesse them. She also has started working on stairs. Her right arm continues to be a problem - but we're getting really good response to weight-bearing exercises and she was able to straighten her fingers on her own for the first time on Monday. Her vision also continues to improve. A few weeks ago when we would work on lateral movement you could literally see her eye muscles struggling to hold the position. Now when you have her look left or right, the eyes have symmetrical movement and the right eye holds the position. We've also seen some changes in pupil size in response to light - not the immediate reaction you see in an uninjured eye, but definite dilation/contraction of the pupil.
Most importantly from our perspective her performance on her various cognitive/attention/processing speed exercises continues to improve. Over the last few days I've watched her very successfully repeat several exercises that she struggled with just a few weeks ago. She's showing good recovery of her ability to think "flexibly" and she's starting to have real success with multi-part reasoning exercises.
Thursday, October 18, 2007
The last couple of days have been incredibly difficult.
Without any warning or discussion with Ken and I, Emily's Craig therapy team took it upon themselves to tell Emily that she wasn't ready to go back to school and that would be their recommendation during our meeting with DSA. I can't begin to express how angry and disappointed Ken and I are. So much trust and faith was destroyed. I would really love for someone to explain to me how completely demoralizing a patient can be a therapy goal.
Ken and I responded to this development by informing the Craig staff that they were no longer welcome at the meeting, but the damage to Emily's psyche was done. She's terribly depressed and angry. We're hoping she can chanel her anger into working hard and proving them wrong.
The meeting with DSA actually went very well. We agreed to start the process of getting Emily set up for homebound instruction 2-hours a day on Tuesdays and Thursdays. This will give her a chance to review what she was working on last Spring and complete the work in all of her classes with a teacher that will work directly with her teachers at DSA. DPS has a number of resources we may or may not need in the future, but they were very encouraging. We also worked through how to handle her application/audition for next year. I also think that once she's working on school work more she'll start writing again. It's not what Emily was hoping for, but it's a first step in the right direction. Since it looks like Emily won't be back at DSA in January, we're also thinking of cutting back on the number of days at Craig to 2 days/week and getting Em set up with the National Sports Center for the Disabled to ski one day/week. It will be great therapy for her and get her back doing something she loves.
Without any warning or discussion with Ken and I, Emily's Craig therapy team took it upon themselves to tell Emily that she wasn't ready to go back to school and that would be their recommendation during our meeting with DSA. I can't begin to express how angry and disappointed Ken and I are. So much trust and faith was destroyed. I would really love for someone to explain to me how completely demoralizing a patient can be a therapy goal.
Ken and I responded to this development by informing the Craig staff that they were no longer welcome at the meeting, but the damage to Emily's psyche was done. She's terribly depressed and angry. We're hoping she can chanel her anger into working hard and proving them wrong.
The meeting with DSA actually went very well. We agreed to start the process of getting Emily set up for homebound instruction 2-hours a day on Tuesdays and Thursdays. This will give her a chance to review what she was working on last Spring and complete the work in all of her classes with a teacher that will work directly with her teachers at DSA. DPS has a number of resources we may or may not need in the future, but they were very encouraging. We also worked through how to handle her application/audition for next year. I also think that once she's working on school work more she'll start writing again. It's not what Emily was hoping for, but it's a first step in the right direction. Since it looks like Emily won't be back at DSA in January, we're also thinking of cutting back on the number of days at Craig to 2 days/week and getting Em set up with the National Sports Center for the Disabled to ski one day/week. It will be great therapy for her and get her back doing something she loves.
Monday, October 15, 2007
I've had people ask me what I mean when I say, "Emily walked xx feet in the parallel bars," so I thought I would explain.
About 6 weeks ago when Emily first started walking regularly in the parallel bars, she needed two people - one in front, one in back - and she was holding on to the bar on her left at all times. It was a big accomplishment when the person in back was able to be close by and not holding on at all times. Back then Emily needed verbal prompts to shift her weight from left to right and really struggled to independently move her right leg. It wasn't uncommon when she'd step forward with her right leg for the knee to buckle and for her to almost lose her balance. We also went through a week or so when she was hyper-extending and locking her right knee to keep it from buckling, which made us worry she was going to hurt her knee.
On Friday, Emily walked about 75 feet - still in the parallel bars, but now she doesn't hold on to the left bar and she only needs her physical therapist to be nearby in case she loses her balance. She takes steps without any prompting, and she's able to safely bear her weight on her right leg without it buckling. She moves her feet to take steps completely independently. She doesn't need any help or verbal cues to move her feet or stay in control.
Today she also walked from the parallel bars back to her chair using a cane/left-side walker. She needed two people close by, but that's exactly how she started walking in the parallel bars, so we have a vision of where she'll be in a few weeks.
Emily continues to get stronger. We're going to start working specifically on stretching to improve her range of motion in her right leg.
We've also had to start reminding Em that one of us needs to be with her when she decides to stand. Last Thursday evening we were headed to a performance at DSA. Ken and I were getting her chair out of the car when we both looked up and there she was standing, by herself, at her car door with no one to help brace the door so that it didn't move on her. Certainly got our attention.
Suzanne is really working Emily in Speech Therapy to challenge herself with higher level logic and reasoning problems. Em's doing very well. She's very quick in her responses and reads more and more at home.
We're still struggling with her right arm - the goal is to find a cast/brace that keeps her arm extended and helps her start using it for weight bearing. The more she uses that arm for weight bearing, the sooner her arm/hand and her brain will find new connections to talk to each other. Same goes for her right eye - she's got really good lateral movement in her eye and we're starting to see more up/down movement. The pupil is stll dilated, fixed and unresponsive to light, but it's not as large as it used to be.
Thursday is the big meeting at DSA to discuss how we can integrate school into Emily's therapy/recovery. Please pray, keep your fingers crossed, send positive energy - whatever it takes to get her back to school in January. It'll all help.
About 6 weeks ago when Emily first started walking regularly in the parallel bars, she needed two people - one in front, one in back - and she was holding on to the bar on her left at all times. It was a big accomplishment when the person in back was able to be close by and not holding on at all times. Back then Emily needed verbal prompts to shift her weight from left to right and really struggled to independently move her right leg. It wasn't uncommon when she'd step forward with her right leg for the knee to buckle and for her to almost lose her balance. We also went through a week or so when she was hyper-extending and locking her right knee to keep it from buckling, which made us worry she was going to hurt her knee.
On Friday, Emily walked about 75 feet - still in the parallel bars, but now she doesn't hold on to the left bar and she only needs her physical therapist to be nearby in case she loses her balance. She takes steps without any prompting, and she's able to safely bear her weight on her right leg without it buckling. She moves her feet to take steps completely independently. She doesn't need any help or verbal cues to move her feet or stay in control.
Today she also walked from the parallel bars back to her chair using a cane/left-side walker. She needed two people close by, but that's exactly how she started walking in the parallel bars, so we have a vision of where she'll be in a few weeks.
Emily continues to get stronger. We're going to start working specifically on stretching to improve her range of motion in her right leg.
We've also had to start reminding Em that one of us needs to be with her when she decides to stand. Last Thursday evening we were headed to a performance at DSA. Ken and I were getting her chair out of the car when we both looked up and there she was standing, by herself, at her car door with no one to help brace the door so that it didn't move on her. Certainly got our attention.
Suzanne is really working Emily in Speech Therapy to challenge herself with higher level logic and reasoning problems. Em's doing very well. She's very quick in her responses and reads more and more at home.
We're still struggling with her right arm - the goal is to find a cast/brace that keeps her arm extended and helps her start using it for weight bearing. The more she uses that arm for weight bearing, the sooner her arm/hand and her brain will find new connections to talk to each other. Same goes for her right eye - she's got really good lateral movement in her eye and we're starting to see more up/down movement. The pupil is stll dilated, fixed and unresponsive to light, but it's not as large as it used to be.
Thursday is the big meeting at DSA to discuss how we can integrate school into Emily's therapy/recovery. Please pray, keep your fingers crossed, send positive energy - whatever it takes to get her back to school in January. It'll all help.
Monday, October 8, 2007
Necessity is the mother of invention...
On Saturday morning Emily's stair lift quit - yes "quit" - mid-way down for breakfast. Ken and I managed to help her down to breakfast, but all of the rest of our Saturday plans were thrown into limbo. The "repairman" came about 3:00 and informed us that he couldn't fix it until "after the weekend." Next time Metro has an issue, do you think I can argue "we'll get to it after the weekend?"
We were able to set up a bed for Emily in the family room, but there was no way to get her to a shower without tackling some stairs. About mid-day Sunday, we decided to go for it. Emily did great! She needed two people to help keep her balance, but a month ago she needed two people to walk in the parallel bars - so definite progress. Em was able to handle all of her weight and take the steps on her own, she just needed Ken and I for balance and safety. Today at Craig she practiced stairs with her PT who was very impressed with how well she did.
Another big development, Emily can now stand up from the car and move to her chair with no help whatsoever. Great progress!
On Saturday morning Emily's stair lift quit - yes "quit" - mid-way down for breakfast. Ken and I managed to help her down to breakfast, but all of the rest of our Saturday plans were thrown into limbo. The "repairman" came about 3:00 and informed us that he couldn't fix it until "after the weekend." Next time Metro has an issue, do you think I can argue "we'll get to it after the weekend?"
We were able to set up a bed for Emily in the family room, but there was no way to get her to a shower without tackling some stairs. About mid-day Sunday, we decided to go for it. Emily did great! She needed two people to help keep her balance, but a month ago she needed two people to walk in the parallel bars - so definite progress. Em was able to handle all of her weight and take the steps on her own, she just needed Ken and I for balance and safety. Today at Craig she practiced stairs with her PT who was very impressed with how well she did.
Another big development, Emily can now stand up from the car and move to her chair with no help whatsoever. Great progress!
Thursday, October 4, 2007
I feel bad that I haven't posted in over a week, but the reality is our days have become pretty routine. Emily has therapy at Craig every Monday, Wednesday and Friday. She and I are home on Tuesdays and Thursdays. We do her PT strengthening exercises, her OT eye exercises, and some miscellaneous reading comprehension/memory stuff. She's getting much, much stronger. On Tuesday she even commented about how easy her leg lifts with her right leg have gotten, so I said it must be time to add an ankle weight!
Emily's therapy at Craig is pretty routine these days as well. In PT she continues to work on strength, balance and walking. Celeste has her doing around 6 transfers back and forth from her chair to mat table each session, which really works her hips and legs. She walks 48-72 feet in the parallel bars each session. Her control continues to get better and better. She's really close to being able to come to a stand from her wheelchair without any help.
OT has been focused a lot on her right eye and right arm. We're still struggling to find a brace/cast that works to give her arm a good stretch without causing any pain or skin irritation. She still doesn't have any purposeful movement in her right hand, but she can consistently do side push ups bending and straightening her right elbow so there is progress. Yesterday she told me she wasn't seeing double looking straight ahead. Who knows, maybe we can lose the spot patch on her glasses soon. Her pupil is still dilated and fixed, but she's got great lateral movement and we're starting to see some better up and down eye movement.
In Speech, Suzanne is focusing a lot on strengthening Emily's foundation of concentration and attention. I've seen a lot of improvement. She also seems to be processing information more quickly.
Fatigue has become a bigger issue. She'll be doing just fine and the suddenly get absolutely exhausted. I think naps would help, but she doesn't want to nap anymore. We're trying our best to keep her eating healthy and getting enough sleep. She's actually sleeping past 6:00 today, which is a first.
Last Thursday her friends elected her Vice-President of Philosophy Club. She really enjoys going every week. Today is her day to bring the topic for discussion. In two weeks we have a meeting with the school psychologist, assistant principal, and her Craig therapists to discuss "incorporating school into her therapy" after the first of the year. I'm actually nervous - she's so anxious to get back to school.
Emily finished reading the latest Harry Potter book on Tuesday - all 784 pages! She's now reading a Garth Nix series that a friend from school recommended that she was in the middle of when she had her accident.
Emily's therapy at Craig is pretty routine these days as well. In PT she continues to work on strength, balance and walking. Celeste has her doing around 6 transfers back and forth from her chair to mat table each session, which really works her hips and legs. She walks 48-72 feet in the parallel bars each session. Her control continues to get better and better. She's really close to being able to come to a stand from her wheelchair without any help.
OT has been focused a lot on her right eye and right arm. We're still struggling to find a brace/cast that works to give her arm a good stretch without causing any pain or skin irritation. She still doesn't have any purposeful movement in her right hand, but she can consistently do side push ups bending and straightening her right elbow so there is progress. Yesterday she told me she wasn't seeing double looking straight ahead. Who knows, maybe we can lose the spot patch on her glasses soon. Her pupil is still dilated and fixed, but she's got great lateral movement and we're starting to see some better up and down eye movement.
In Speech, Suzanne is focusing a lot on strengthening Emily's foundation of concentration and attention. I've seen a lot of improvement. She also seems to be processing information more quickly.
Fatigue has become a bigger issue. She'll be doing just fine and the suddenly get absolutely exhausted. I think naps would help, but she doesn't want to nap anymore. We're trying our best to keep her eating healthy and getting enough sleep. She's actually sleeping past 6:00 today, which is a first.
Last Thursday her friends elected her Vice-President of Philosophy Club. She really enjoys going every week. Today is her day to bring the topic for discussion. In two weeks we have a meeting with the school psychologist, assistant principal, and her Craig therapists to discuss "incorporating school into her therapy" after the first of the year. I'm actually nervous - she's so anxious to get back to school.
Emily finished reading the latest Harry Potter book on Tuesday - all 784 pages! She's now reading a Garth Nix series that a friend from school recommended that she was in the middle of when she had her accident.
Subscribe to:
Posts (Atom)
