As we ring out the worst year of our lives, we need to thank everyone who's been there to support us and remember the things we have to be thankful for.
On the "thank you" list - everyone that kept us fed and functioning for so many months; everyone that sat with us through so many hours in various hospitals, and everyone that couldn't be here but offered their thoughts and prayers. We've been so touched by your support, and we know the prayers have helped. Thank you. Our only request is that everyone remember that it's a long, lonely recovery and it's been several months since the "coming home" party.
On remembering what we have to be thankful for: Emily didn't die. She easily could have. The doctor at the 7-mile Clinic in Winter Park frankly thought she would, but she didn't. Not only didn't she die, but her progress these last few months has been miraculous. Physically she still has challenges, but mentally she's "our" Emily more and more every day. Her progress has been so remarkable the last couple of months that her Craig therapy team has been able to justify maintaining her 3x/week outpatient schedule, which is frankly unheard of for someone 9 months post injury.
The last thank you goes to an unlikely recipient - our insurance, United HealthCare. They haven't hassled us on a single bill and our case manager has been a wonderful support person. I know it's unusual, and unpopular, to thank your insurance carrier but they've been there for a young girl that's needed them.
Here's to more and more miracles in 2008!
Monday, December 31, 2007
Thursday, December 27, 2007
We've had a truly blessed Christmas. Emily looked at Ken and I during dinner Christmas Eve and with a look of true joy on her face said, "I'm so happy." What more could we possibly hope for. Later at Christmas Eve mass she told me that God must have decided it just wasn't her time.
Christmas Day was a beautiful, snowy day. Both Emily and Hannah were thrilled with their gifts. Emily did a fabulous job on her shopping for the family - she picked truly thoughtful gifts for each of us. Hannah gave each of us certificates good for a day of personalized pampering that she made herself along with cards. Very sweet, thoughtful and generous. We had fun watching Hannah play her Wii games (Hannah Montana and High School Musical Sing It), had a lovely dinner, and finished the day watching the third Pirates movie.
Everyone's been asking how things went with the DPS administration, so I guess I'll have to tackle the topic. I don't think either Ken or I walked away from our meeting on the 18th with any real sense of progress. Emily has been re-enrolled at DSA, which is obviously positive. Now her home school teacher can coordinate with her teachers at DSA on her curriculum, which makes much more sense. We agreed to close out Emily's 2006 Spring semester with half credit - so she'll maintain her 4.0+ GPA, but she'll need to make up 2.5 credit hours. Hopefully we can accomplish that with the home school teacher over the next several months. There's absolutely no commitment that Emily will be accepted back at DSA for Fall 2008 - she'll need to prove she can do the work and DPS needs to determine just what accommodations they're obligated to make at a magnet school. We still don't have a case manager from the DPS TBI team, which means that we have yet to work with anyone who truly understands recovery from a brain injury. One concern was the emphasis DPS is putting on the cognitive testing that was done at Craig last August. It's very outdated and not even remotely reflective of where Emily's at now. We discussed our concerns with Emily's Speech Therapist and we've agreed that it's probably a good idea to do some updated testing after the holidays. In some ways there's no need to test - we all know she's making progress, but we need a more accurate picture of where Emily's at now before we meet with the DSA team in January. Of course any testing done now will be completely irrelevant by next Fall, but that's just not the way they see it. Emily writes almost every day. She's started a sequel to the fantasy novella she wrote last year - hopefully we can eventually get the DSA people to look at what she's writing and think beyond what they're obligated to do and how they can protect themselves.
For now, we count our blessings, thank God that Emily comes back to us a little more every day, and keep working hard.
Christmas Day was a beautiful, snowy day. Both Emily and Hannah were thrilled with their gifts. Emily did a fabulous job on her shopping for the family - she picked truly thoughtful gifts for each of us. Hannah gave each of us certificates good for a day of personalized pampering that she made herself along with cards. Very sweet, thoughtful and generous. We had fun watching Hannah play her Wii games (Hannah Montana and High School Musical Sing It), had a lovely dinner, and finished the day watching the third Pirates movie.
Everyone's been asking how things went with the DPS administration, so I guess I'll have to tackle the topic. I don't think either Ken or I walked away from our meeting on the 18th with any real sense of progress. Emily has been re-enrolled at DSA, which is obviously positive. Now her home school teacher can coordinate with her teachers at DSA on her curriculum, which makes much more sense. We agreed to close out Emily's 2006 Spring semester with half credit - so she'll maintain her 4.0+ GPA, but she'll need to make up 2.5 credit hours. Hopefully we can accomplish that with the home school teacher over the next several months. There's absolutely no commitment that Emily will be accepted back at DSA for Fall 2008 - she'll need to prove she can do the work and DPS needs to determine just what accommodations they're obligated to make at a magnet school. We still don't have a case manager from the DPS TBI team, which means that we have yet to work with anyone who truly understands recovery from a brain injury. One concern was the emphasis DPS is putting on the cognitive testing that was done at Craig last August. It's very outdated and not even remotely reflective of where Emily's at now. We discussed our concerns with Emily's Speech Therapist and we've agreed that it's probably a good idea to do some updated testing after the holidays. In some ways there's no need to test - we all know she's making progress, but we need a more accurate picture of where Emily's at now before we meet with the DSA team in January. Of course any testing done now will be completely irrelevant by next Fall, but that's just not the way they see it. Emily writes almost every day. She's started a sequel to the fantasy novella she wrote last year - hopefully we can eventually get the DSA people to look at what she's writing and think beyond what they're obligated to do and how they can protect themselves.
For now, we count our blessings, thank God that Emily comes back to us a little more every day, and keep working hard.
Sunday, December 16, 2007
Emily had a truly wonderful week in therapy culminated by her walking over 200 feet - across the gym, out to the nurses station, down the hall, in the back door of the gym, the length of the gym, and back across to her chair - all with her hemi-cane without a rest. She still needs someone holding her gait belt in case she loses her balance, but she did all of her cane movement and placement on her own. All this after spending 1/2 hour walking in the parallel bars without grabbing the left bar.
In speech she continues to do the exercise faster and more accurately. Lots of good indications that her speed of processing is really coming along. Her voice is sounding more normal, but we still need to follow up with the doctor at CU-Health Sciences. Suzanne suggested she may have voice therapists on staff that could work with Em, perhaps over the summer. Suzanne even mentioned that since Emily is doing so well with her reading and reading comprehension, she may not need to work on that with her any longer.
Emily went Christmas shopping with her Rec Therapist and a group of other patients on Wednesday. She had a really wonderful time - they shopped and went to lunch and I met them back at Craig about 3:00. I think she really enjoyed the independence.
Emily and her homebound teacher are getting along great. They work on math for an hour in the morning. They're using an Australian on-line math curriculum that was developed for kids living in the outback. It's a great way for Emily to review where she was at before the accident so that she can develop the confidence to tackle her unfinished assignments and get ready for her Junior year. In the afternoon they spend 1-1/2 hour working on literature and composition. Mrs. Queen's been using questions from the PSAT as exercises, which is good news since typically the PSAT is taken by Juniors as prep for the SAT.
Emily is religious about keeping up with her home exercise program. She's consistently riding 30-40 minutes on her recumbent bike every day she's not at Craig and she continues to do mat classes for strengthening on Mondays and Wednesdays at Craig. She rode for almost 5 miles last Tuesday.
We're starting to get some more positive news out of DPS. I have a meeting on Tuesday with the Manager of Special Education and the Manager of Nursing Services. It looks like they will be recommending that Emily re-enroll at DSA so that her homebound teacher can coordinate with her DSA teachers. If they follow through, this is the best Christmas gift any of us could have gotten. Emily's speech therapist has written a note urging them to reconsider allowing Emily to attend Writing and Philosophy Club - she feels very strongly that attendance at the clubs is important to Emily's recovery and reintegration. It's been so difficult working with DPS that I'm afraid to get my hopes up too high, but I'm cautiously optimistic.
In speech she continues to do the exercise faster and more accurately. Lots of good indications that her speed of processing is really coming along. Her voice is sounding more normal, but we still need to follow up with the doctor at CU-Health Sciences. Suzanne suggested she may have voice therapists on staff that could work with Em, perhaps over the summer. Suzanne even mentioned that since Emily is doing so well with her reading and reading comprehension, she may not need to work on that with her any longer.
Emily went Christmas shopping with her Rec Therapist and a group of other patients on Wednesday. She had a really wonderful time - they shopped and went to lunch and I met them back at Craig about 3:00. I think she really enjoyed the independence.
Emily and her homebound teacher are getting along great. They work on math for an hour in the morning. They're using an Australian on-line math curriculum that was developed for kids living in the outback. It's a great way for Emily to review where she was at before the accident so that she can develop the confidence to tackle her unfinished assignments and get ready for her Junior year. In the afternoon they spend 1-1/2 hour working on literature and composition. Mrs. Queen's been using questions from the PSAT as exercises, which is good news since typically the PSAT is taken by Juniors as prep for the SAT.
Emily is religious about keeping up with her home exercise program. She's consistently riding 30-40 minutes on her recumbent bike every day she's not at Craig and she continues to do mat classes for strengthening on Mondays and Wednesdays at Craig. She rode for almost 5 miles last Tuesday.
We're starting to get some more positive news out of DPS. I have a meeting on Tuesday with the Manager of Special Education and the Manager of Nursing Services. It looks like they will be recommending that Emily re-enroll at DSA so that her homebound teacher can coordinate with her DSA teachers. If they follow through, this is the best Christmas gift any of us could have gotten. Emily's speech therapist has written a note urging them to reconsider allowing Emily to attend Writing and Philosophy Club - she feels very strongly that attendance at the clubs is important to Emily's recovery and reintegration. It's been so difficult working with DPS that I'm afraid to get my hopes up too high, but I'm cautiously optimistic.
Tuesday, December 11, 2007
I have to start by saying how incredibly grateful Ken, Emily and I are for all the generosity shown by our friends with the Winter Park Freestyle team, Rocky Mountain Freestyle, and others from around Colorado and across the county that donated to the Keep Emily Skiing fundraiser. Thanks to all of you Emily will be able to enjoy almost 20 days skiing with the National Sports Center - and we know how much getting back on skis will help her maintain that positive attitude that's kept her going so far. You'll all be getting individual notes, but I thought some public recognition was warranted - Laurie thank you so much for doing this for Em.
It occurs to me that there are lots of people that follow this blog and didn't know about the fundraiser because they aren't involved in the world of freestyle skiing. Laurie did a darn good job of making it a surprise for us as well. The fundraiser is "officially" over, but if you'd like to contribute you can send checks made out to the NSCD to the Winter Park Competition Center, Keep Emily Skiing Fundraiser, P.O. Box 36, Winter Park, CO 80482. There are half-day programs ($56) and full-day programs ($126). I'm sure Laurie won't mind collecting donations for a little while longer (or at least I sincerely hope not).
We also need to thank the gentleman who donated his seats to the Avalanche game Sunday night. What a fun game to see live - 9 goals! I also have to say that overall the Pepsi Center gets very high marks from me for accessability (and believe me, not all venues in Denver do - I could write a brutal review of places that make maneuvering a wheelchair difficult and clueless, inconsiderate people. It's a whole different world from our angle.)
Mondays are always better when Emily's therapists comment on how much better she's doing than on Friday. One tenet of rehab/recovery is that a patient needs time to rest and incorporate new things learned. On Friday, Ken and Emily tried out a number of options for canes to assist with Emily's walking, some more successful than others. When Celeste and I worked on the same thing today, Emily did very well with her hemi but also did pretty well with the longer arm cane with the ergonomic hand grip and wrap around her fore arm. This latter may be a very good option for her when she's more confident in her balance. The downside with the hemi that she's using now is that if she places too close to her left foot, it's easy for it to get in her way and trip her. One big part of walking with any cane is learning how to feel where to place it so you don't have to look down. The minute she looks down, her weight goes forward and she loses her balance. A lot of what we do to help her is keep her left hand steady, keep her from locking out her left elbow, and be there in case she loses her balance so she doesn't fall. She does all the actual walking work.
Suzanne also saw big improvements in speech. On Friday after only a couple days of reading comprehension exercises at the 10th grade level, Em moved up to the 12th grade level. She did very well, but her scores on the comprehension questions went down. Monday she was right back at 80% correct, which is where she was on the 10th grade exercises last Wednesday. She also did a great job with some word association exercises - two meanings for the same word, two words why are they alike/different, naming opposites moving from pretty easy concrete examples to much more conceptual. She's much, much faster at these word exercises than she used to be.
It will be interesting to see if Emily's homebound teacher sees similar improvements today. She's a wonderful retired teacher who got bored and decided to go back to work part-time teaching kids that are homebound. Emily really likes her, but Emily's liked every teacher she's ever had (with the exception of 6th-7th grade science). You don't suppose that's why science is still her least favorite subject?
Emily's going shopping with a group from Craig on Wednesday. She developed her own shopping list and budget - all we have to provide is the money (some things never change). Hopefully this weekend we'll be able to get to together with some friends for some holiday cheer.
It occurs to me that there are lots of people that follow this blog and didn't know about the fundraiser because they aren't involved in the world of freestyle skiing. Laurie did a darn good job of making it a surprise for us as well. The fundraiser is "officially" over, but if you'd like to contribute you can send checks made out to the NSCD to the Winter Park Competition Center, Keep Emily Skiing Fundraiser, P.O. Box 36, Winter Park, CO 80482. There are half-day programs ($56) and full-day programs ($126). I'm sure Laurie won't mind collecting donations for a little while longer (or at least I sincerely hope not).
We also need to thank the gentleman who donated his seats to the Avalanche game Sunday night. What a fun game to see live - 9 goals! I also have to say that overall the Pepsi Center gets very high marks from me for accessability (and believe me, not all venues in Denver do - I could write a brutal review of places that make maneuvering a wheelchair difficult and clueless, inconsiderate people. It's a whole different world from our angle.)
Mondays are always better when Emily's therapists comment on how much better she's doing than on Friday. One tenet of rehab/recovery is that a patient needs time to rest and incorporate new things learned. On Friday, Ken and Emily tried out a number of options for canes to assist with Emily's walking, some more successful than others. When Celeste and I worked on the same thing today, Emily did very well with her hemi but also did pretty well with the longer arm cane with the ergonomic hand grip and wrap around her fore arm. This latter may be a very good option for her when she's more confident in her balance. The downside with the hemi that she's using now is that if she places too close to her left foot, it's easy for it to get in her way and trip her. One big part of walking with any cane is learning how to feel where to place it so you don't have to look down. The minute she looks down, her weight goes forward and she loses her balance. A lot of what we do to help her is keep her left hand steady, keep her from locking out her left elbow, and be there in case she loses her balance so she doesn't fall. She does all the actual walking work.
Suzanne also saw big improvements in speech. On Friday after only a couple days of reading comprehension exercises at the 10th grade level, Em moved up to the 12th grade level. She did very well, but her scores on the comprehension questions went down. Monday she was right back at 80% correct, which is where she was on the 10th grade exercises last Wednesday. She also did a great job with some word association exercises - two meanings for the same word, two words why are they alike/different, naming opposites moving from pretty easy concrete examples to much more conceptual. She's much, much faster at these word exercises than she used to be.
It will be interesting to see if Emily's homebound teacher sees similar improvements today. She's a wonderful retired teacher who got bored and decided to go back to work part-time teaching kids that are homebound. Emily really likes her, but Emily's liked every teacher she's ever had (with the exception of 6th-7th grade science). You don't suppose that's why science is still her least favorite subject?
Emily's going shopping with a group from Craig on Wednesday. She developed her own shopping list and budget - all we have to provide is the money (some things never change). Hopefully this weekend we'll be able to get to together with some friends for some holiday cheer.
Friday, November 30, 2007
It's always a big accomplishment when a brain injury patient at Craig is able to walk outside of the therapy gym. On Wednesday, after walking nearly 150 feet in the parallel bars, Emily was able to walk across the gym and out to the nurses station for the first time. She's walking with a hemi-cane or walker, which is similar to a normal folding walker except it's used on the side rather than the front. Because of the continued issues with Emily's right arm, this is a better option than a traditional walker. She also continues to work very hard on the treadmill at Craig - it's unbelievably exhausting for her, but she still manages to go on and complete her other therapy sessions every time. Most importantly, she goes straight from PT to Speech and regardless of how hard she's worked and how tired she is, she shows progress in Speech every day.
Emily also advanced a level on three different cognitive/reading comprehension/reasoning exercises she's been working on this week. Today she started doing reading comprehension exercises at the 10th grade level and had 80% accuracy on the exercise quiz.
Emily was writing a horror novella when she fell last April. Yesterday she finished that novella (50 pages) and submitted it to Mrs. Clark. She's worked so hard on the novella - typing it by herself for hours at a time. I'm looking forward to giving copies of it to therapy team (at least the two who've said they want to read it) and seeing if they can tell where she was when she had the accident.
Her progress this week has just been remarkable. She's, justifiably, incredibly proud of herself.
Emily has finally been approved for homebound instruction and a teacher has been assigned. She'll be working with a very experienced teacher 2.5 hours per day, two days per week. We're still working through exactly what she'll be working on - the whole DSA/George Washington issue is still there. It's been so frustrating to work through this issue with a group of people at both DSA and GW that have never so much as met Emily, while her DSA teachers who know her and care about her are left completely out. It's not even completely clear that she'll get formal credit for finishing her novella.
Katherine, bless her heart, is coming over for a movie and dinner tonight. I don't know what we would have done without her incredible loyal and unflagging friendship.
Emily also advanced a level on three different cognitive/reading comprehension/reasoning exercises she's been working on this week. Today she started doing reading comprehension exercises at the 10th grade level and had 80% accuracy on the exercise quiz.
Emily was writing a horror novella when she fell last April. Yesterday she finished that novella (50 pages) and submitted it to Mrs. Clark. She's worked so hard on the novella - typing it by herself for hours at a time. I'm looking forward to giving copies of it to therapy team (at least the two who've said they want to read it) and seeing if they can tell where she was when she had the accident.
Her progress this week has just been remarkable. She's, justifiably, incredibly proud of herself.
Emily has finally been approved for homebound instruction and a teacher has been assigned. She'll be working with a very experienced teacher 2.5 hours per day, two days per week. We're still working through exactly what she'll be working on - the whole DSA/George Washington issue is still there. It's been so frustrating to work through this issue with a group of people at both DSA and GW that have never so much as met Emily, while her DSA teachers who know her and care about her are left completely out. It's not even completely clear that she'll get formal credit for finishing her novella.
Katherine, bless her heart, is coming over for a movie and dinner tonight. I don't know what we would have done without her incredible loyal and unflagging friendship.
Monday, November 26, 2007
Sometimes you get little glimmers of hope, and sometimes you get pretty big messages. A few of things that happened today represent pretty big messages to me.
First, Emily had a very full morning - she walked on the treadmill in the Lite Gait harness for half of her PT session and then spent the rest of her time walking in the parallel bars. The treadmill is tough because it forces a walking speed (albeit pretty slow) - she has to work on consistently taking steps at a pre-set speed while Celeste makes sure she's taking good, solid steps with a bent knee/heel strike gait. On Friday when she walked on the treadmill for 1/2 hour, she only had the energy to do some sit-to-stand work at the mat table. Today, she finished up her session practicing what she'd been working on in the parallel bars. It's just another indication that she's (1) getting stronger; and (2) moving more efficiently with practice.
Second, after an hour of PT and an hour of Speech, Emily and Ken went out to lunch. I met them and Em and I went back to Craig. Instead of wanting to just veg and watch TV, Emily wanted to read her book during her extra 1/2 hour - so she went to the outpatient lounge and read while I visited with another Mom.
Third, after an hour of OT from 1-2, Emily did mat class for the first time in several months. She wasn't "officially" on the schedule so I had to spot her, but she did really well and Celeste agreed that she ought to be doing mat class a couple of times every week.
Fourth, we got home about 4:15 after 3 hours of therapy, an hour of mat class, going out to lunch, and picking up Hannah. When I asked Em if she wanted to read or watch TV, she answered that she wanted to go upstairs and work on her horror novella, which she did until we sat down to dinner at 6:00. What a testament to how much better she's handling her fatigue that she had enough energy after a long day at Craig to come home and write.
Finally, I was visiting with another Mom I've never talked to before this afternoon. It turns out that Emily and her daughter, Rachel, were both at Kindred before Craig. When she was in her early dark days at Kindred, the staff suggested she read Emily's blog. While she'd seen Em at Craig before today, she never realized that she was "the Emily from the skiing accident" until today. She thanked me for the blog and for helping her - that's all I could have ever hoped for.
First, Emily had a very full morning - she walked on the treadmill in the Lite Gait harness for half of her PT session and then spent the rest of her time walking in the parallel bars. The treadmill is tough because it forces a walking speed (albeit pretty slow) - she has to work on consistently taking steps at a pre-set speed while Celeste makes sure she's taking good, solid steps with a bent knee/heel strike gait. On Friday when she walked on the treadmill for 1/2 hour, she only had the energy to do some sit-to-stand work at the mat table. Today, she finished up her session practicing what she'd been working on in the parallel bars. It's just another indication that she's (1) getting stronger; and (2) moving more efficiently with practice.
Second, after an hour of PT and an hour of Speech, Emily and Ken went out to lunch. I met them and Em and I went back to Craig. Instead of wanting to just veg and watch TV, Emily wanted to read her book during her extra 1/2 hour - so she went to the outpatient lounge and read while I visited with another Mom.
Third, after an hour of OT from 1-2, Emily did mat class for the first time in several months. She wasn't "officially" on the schedule so I had to spot her, but she did really well and Celeste agreed that she ought to be doing mat class a couple of times every week.
Fourth, we got home about 4:15 after 3 hours of therapy, an hour of mat class, going out to lunch, and picking up Hannah. When I asked Em if she wanted to read or watch TV, she answered that she wanted to go upstairs and work on her horror novella, which she did until we sat down to dinner at 6:00. What a testament to how much better she's handling her fatigue that she had enough energy after a long day at Craig to come home and write.
Finally, I was visiting with another Mom I've never talked to before this afternoon. It turns out that Emily and her daughter, Rachel, were both at Kindred before Craig. When she was in her early dark days at Kindred, the staff suggested she read Emily's blog. While she'd seen Em at Craig before today, she never realized that she was "the Emily from the skiing accident" until today. She thanked me for the blog and for helping her - that's all I could have ever hoped for.
Thursday, November 22, 2007
For Thanksgiving Ken and I want to thank everyone for all they've done for us the last 8 months.
We could have lost Emily last April, but we didn't. Thank God, Dr. Bortz, Flight for Life, and the St. A's ICU staff she's still with us. She's an incredible gift. She continues to get stronger every day. She's writing again almost every day. Her double vision is almost resolved. Her standing balance has gotten very strong, and she's walking better all the time. Her doctors and therapists all agree she's ready to start school again, and we're really encouraged by all the help Sarah Blumenthal at George Washington High School has provided. We're really hoping that she can get back involved with her after school clubs and maybe Creative Writing a couple of days a week very soon. Her progress is really exciting.
All of our friends, families, co-workers and neighbors have been incredible. We couldn't have made it without your support. Emily's friends have been truly strong - they've stuck with her through this ordeal and never made her feel different or excluded. Hannah deserves a lot of credit for being such a great sister and wonderful helper.
Laurie, Hendo and the others with the WP Freestyle team - your constant support was amazing. We truly hope to see you on the mountain this winter.
We've met so many wonderful people at Craig - people that will always feel like family. Therapists, doctors, nurses, techs, other staff, and most importantly all of the wonderful families we've shared our journey with. There have been some incredible victories.
We had a quiet day at home. Emily spent almost the entire day writing and chatting with Brendan on-line. She's written 4 pages of her horror novella in the last couple of weeks - it's almost finished. We had a great dinner and then relaxed and watched a movie.
God bless all of you.
We could have lost Emily last April, but we didn't. Thank God, Dr. Bortz, Flight for Life, and the St. A's ICU staff she's still with us. She's an incredible gift. She continues to get stronger every day. She's writing again almost every day. Her double vision is almost resolved. Her standing balance has gotten very strong, and she's walking better all the time. Her doctors and therapists all agree she's ready to start school again, and we're really encouraged by all the help Sarah Blumenthal at George Washington High School has provided. We're really hoping that she can get back involved with her after school clubs and maybe Creative Writing a couple of days a week very soon. Her progress is really exciting.
All of our friends, families, co-workers and neighbors have been incredible. We couldn't have made it without your support. Emily's friends have been truly strong - they've stuck with her through this ordeal and never made her feel different or excluded. Hannah deserves a lot of credit for being such a great sister and wonderful helper.
Laurie, Hendo and the others with the WP Freestyle team - your constant support was amazing. We truly hope to see you on the mountain this winter.
We've met so many wonderful people at Craig - people that will always feel like family. Therapists, doctors, nurses, techs, other staff, and most importantly all of the wonderful families we've shared our journey with. There have been some incredible victories.
We had a quiet day at home. Emily spent almost the entire day writing and chatting with Brendan on-line. She's written 4 pages of her horror novella in the last couple of weeks - it's almost finished. We had a great dinner and then relaxed and watched a movie.
God bless all of you.
Wednesday, November 14, 2007
Since Ken and I started our new half day work/home schedule I hadn't gotten to spend a whole day with Emily at home. I was so incredibly proud of her yesterday.
She started the day by checking her e-mail and writing her assigned daily e-mail to Mrs. Clark. This assignment was really a stroke of brilliance on Jana's part - writing the daily e-mail has forced Emily to get so much more comfortable working on her computer, and since it was Jana's assignment Mom isn't nagging her to try to work on a computer for a little while.
Em and I then did all of her strengthening and stretching exercises. She can now do her calf raises with a bolster under her knees with no cueing from me on her right leg. And her control with the balance ball has improved tremendously. After we stretched, she rested for about 15 minutes and then rode her recumbent bike for 22 minutes. The recumbent is much more difficult for Em than the MotoMed chair bike at Craig, and she's never been able to go more than 15 minutes before yesterday. Our goal is 30-40 minutes a day on off-Craig days (40 minutes being the length of a Buffy episode on dvd). Based on how strong she was yesterday, I know we'll get there.
The most impressive thing about yesterday was the afternoon. Emily spent 3 full hours writing on her laptop. She finished 2/3 of a page of the horror novella she's finishing and chatted with Brendan. Her tremors in her left hand have gotten so much better and it's helped her typing tremendously. When it's finished, her horrror novella will be the only direct comparison we'll have to her writing pre/post accident. I'm anxiously awaiting its completion so I can read through it and see how what she's writing now compares.
By 4:00 she was really tired, but she had a snack and read for an hour while Hannah finished her homework, and then the two of them watched "Once More With Feeling" while I fixed dinner. We finished dinner by 7:00 and she showered and crashed. We can definitely see an increase in her fatigue with the new meds, but she crashes at about the same time - she's just even more tired than she would have been a week ago. She's been in a fabulous mood the last two days, so we're hoping she's adjusted to the new meds and the sadness and anger we were seeing this weekend is behind us.
She started the day by checking her e-mail and writing her assigned daily e-mail to Mrs. Clark. This assignment was really a stroke of brilliance on Jana's part - writing the daily e-mail has forced Emily to get so much more comfortable working on her computer, and since it was Jana's assignment Mom isn't nagging her to try to work on a computer for a little while.
Em and I then did all of her strengthening and stretching exercises. She can now do her calf raises with a bolster under her knees with no cueing from me on her right leg. And her control with the balance ball has improved tremendously. After we stretched, she rested for about 15 minutes and then rode her recumbent bike for 22 minutes. The recumbent is much more difficult for Em than the MotoMed chair bike at Craig, and she's never been able to go more than 15 minutes before yesterday. Our goal is 30-40 minutes a day on off-Craig days (40 minutes being the length of a Buffy episode on dvd). Based on how strong she was yesterday, I know we'll get there.
The most impressive thing about yesterday was the afternoon. Emily spent 3 full hours writing on her laptop. She finished 2/3 of a page of the horror novella she's finishing and chatted with Brendan. Her tremors in her left hand have gotten so much better and it's helped her typing tremendously. When it's finished, her horrror novella will be the only direct comparison we'll have to her writing pre/post accident. I'm anxiously awaiting its completion so I can read through it and see how what she's writing now compares.
By 4:00 she was really tired, but she had a snack and read for an hour while Hannah finished her homework, and then the two of them watched "Once More With Feeling" while I fixed dinner. We finished dinner by 7:00 and she showered and crashed. We can definitely see an increase in her fatigue with the new meds, but she crashes at about the same time - she's just even more tired than she would have been a week ago. She's been in a fabulous mood the last two days, so we're hoping she's adjusted to the new meds and the sadness and anger we were seeing this weekend is behind us.
Sunday, November 11, 2007
I find myself struggling to find things to write about on the blog these days. Our routine is pretty set and there's only so many ways to say Emily continues to slowly get better. I got some great video of Em walking in the parallel bars with absolutely no help last Wednesday that I'll try to figure out how to add to the blog. She looked really good. She's starting to work more with her cane. Her PT and I agree that she does better with her cane than she does with a walker or a shopping cart because her right arm gets in the way. It looks like we're going to try another round of nerve block injections on that right arm. She still has full range, but no purposeful movement and it's still very, very tight. Her pec and bicep are like bands of steel they're so tight. Ken and I are also seriously considering accupuncture - the Craig folks won't "endorse" the idea, but it can't hurt.
She saw her neuro-opthamologist again last week. Her right eye is making great progress. We have some new exercises to work on convergence, but the lateral movement is very strong. She's still only got about 10% up/down, but based on the progress she's made we're optimistic.
We got her a recumbent bike for home so she can maintain a regular exercise program. The delivery guys just loved getting it up the stairs! So far Em's a little intimidated, but she'll get used to it. I've read more and more recently about the benefits of a regular exercise program for people who've suffered a brain injury. Our loft is looking like quite the home PT gym. She does the stairs well enough we might have been able to put it in the basement, but it takes two of us to do stairs with her so it would have limited when she could ride. Stairs are also a lot of work for her, so she probably wouldn't have had enough energy to really ride once she got down there.
We went to REI yesterday to spend our dividend and replace Em's ski clothes. We're really hoping to get her up with the NSCD this winter. She got some cool stuff (and it's not even green!), but the trip ended up being pretty emotional for her. Sometimes it just hits her and she gets so angry and sad. One of the clerks was very sweet and did a nice job of distracting her. We were also hoping to get her a wet suit top that she could wear for pool therapy at the JCC, but no luck.
Tonight Emily and her friend Katherine are planning to go hear the Youth Slam Poetry Team at the Mercury Cafe. I think Em will really enjoy it. We're working through some issues with DSA (that I'm trying really hard to be positive about), so she won't be able to attend Philosophy or Writing Club for the time being. Em's on-line almost every morning if people want to chat or send her e-mails.
She saw her neuro-opthamologist again last week. Her right eye is making great progress. We have some new exercises to work on convergence, but the lateral movement is very strong. She's still only got about 10% up/down, but based on the progress she's made we're optimistic.
We got her a recumbent bike for home so she can maintain a regular exercise program. The delivery guys just loved getting it up the stairs! So far Em's a little intimidated, but she'll get used to it. I've read more and more recently about the benefits of a regular exercise program for people who've suffered a brain injury. Our loft is looking like quite the home PT gym. She does the stairs well enough we might have been able to put it in the basement, but it takes two of us to do stairs with her so it would have limited when she could ride. Stairs are also a lot of work for her, so she probably wouldn't have had enough energy to really ride once she got down there.
We went to REI yesterday to spend our dividend and replace Em's ski clothes. We're really hoping to get her up with the NSCD this winter. She got some cool stuff (and it's not even green!), but the trip ended up being pretty emotional for her. Sometimes it just hits her and she gets so angry and sad. One of the clerks was very sweet and did a nice job of distracting her. We were also hoping to get her a wet suit top that she could wear for pool therapy at the JCC, but no luck.
Tonight Emily and her friend Katherine are planning to go hear the Youth Slam Poetry Team at the Mercury Cafe. I think Em will really enjoy it. We're working through some issues with DSA (that I'm trying really hard to be positive about), so she won't be able to attend Philosophy or Writing Club for the time being. Em's on-line almost every morning if people want to chat or send her e-mails.
Friday, November 2, 2007
We had an excellent meeting with our Craig therapy team on Tuesday and I think we've identified a plan for therapy and school that everyone supports and a vision for how we all can better communicate. In a nutshell, we're hoping to use the next 10 months to complete Emily's 10th grade classes through a combination of homebound school, working with Craig's teacher, and the help and support of Mrs. Clark. One key component is getting Mrs. Dubrava, Ms. F-D and the DSA administration to allow Emily to audit her Creative Writing class at least two days a week starting in January. Her therapy team believes this would be a key part of continuing her therapy and slowly reintegrating her in the community. It's also key to beginning the process of evaluating whether or not Emily will be able to return to DSA full-time as an 11th grader in the Fall. Dr. Weintraub was specifically concerned that changing schools at this point in her recovery would be detrimental to Em, so we need to start sooner rather than later to see if we can make it work. Ken and I are relieved and happy that we were able to work through our issues with our Craig team. As Dr. Weintraub said, we've all become family and need to support each other.
Emily had a good week of therapy. She continued to work on her reading comprehension, which has improved significantly in just the last month. She also started to work on her longer-term retention of materials learned in reading comprehension exercises. She tried working with voice-recognition software, which we'll continue to explore as an option. She also did a lot of work on memory and fine-motor coordination. The biggest development was with her walking. Em did 72 feet in the parallel bars today with the best gait, control and balance that she's ever had. After that demonstration, she walked across the gym using first a cane and next a shopping cart. It's the first time she's walked any distance outside of the parallel bars in several weeks and she did very well. Celeste even gave Ken and I permission to start working with her on walking with a can for short distances at home - with help - and even suggested we try to get a loaner shopping cart for short neighborhood walks. Em was so happy with her progress.
This afternoon, even after a very long day at Craig, Emily had a wonderful visit with Mrs. Clark. They talked about what Emily's been reading, and Jana borrowed a book Emily recently finished and a copy of her as-yet incomplete horror novella to read. She'll plan to visit again soon to discuss the book and brainstorm with Emily how to finish her novella. She and Em also agreed on Emily's last contract to finish up her 10th grade Creative Writing - Emily is going to write 6 character descriptions based on her friends at Craig. She'll take pictures (by herself), write a sketch of what she knows about the person, and then describe how she would use them as a character in a story. I think it will be a really fun project. Mrs. Clark also gave Emily an assignment to write her an e-mail every day so she'll get back into the habit of writing regularly and, hopefully, get over her frustration with typing on the computer.
All-in-all a very good week.
Emily had a good week of therapy. She continued to work on her reading comprehension, which has improved significantly in just the last month. She also started to work on her longer-term retention of materials learned in reading comprehension exercises. She tried working with voice-recognition software, which we'll continue to explore as an option. She also did a lot of work on memory and fine-motor coordination. The biggest development was with her walking. Em did 72 feet in the parallel bars today with the best gait, control and balance that she's ever had. After that demonstration, she walked across the gym using first a cane and next a shopping cart. It's the first time she's walked any distance outside of the parallel bars in several weeks and she did very well. Celeste even gave Ken and I permission to start working with her on walking with a can for short distances at home - with help - and even suggested we try to get a loaner shopping cart for short neighborhood walks. Em was so happy with her progress.
This afternoon, even after a very long day at Craig, Emily had a wonderful visit with Mrs. Clark. They talked about what Emily's been reading, and Jana borrowed a book Emily recently finished and a copy of her as-yet incomplete horror novella to read. She'll plan to visit again soon to discuss the book and brainstorm with Emily how to finish her novella. She and Em also agreed on Emily's last contract to finish up her 10th grade Creative Writing - Emily is going to write 6 character descriptions based on her friends at Craig. She'll take pictures (by herself), write a sketch of what she knows about the person, and then describe how she would use them as a character in a story. I think it will be a really fun project. Mrs. Clark also gave Emily an assignment to write her an e-mail every day so she'll get back into the habit of writing regularly and, hopefully, get over her frustration with typing on the computer.
All-in-all a very good week.
Monday, October 29, 2007
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.
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.
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.
Wednesday, September 26, 2007
Incremental progress is sometimes hard to track, but here's an example.
Last Tuesday we were thrilled when Emily was able to stand and maintain her balance for 10 seconds at a time multiple times. By last Thursday, she was able to stand and maintain her balance for 30 seconds at a time, multiple times. Yesterday, one week from last Tuesday, she was able to stand without assistance, get her balance, and make the steps necessary to transfer to the car, chair, etc. with no cues or help other than balance!
Today in PT she came from a sit to a stand with absolutely no help!
We met with Emily's doctors and therapy team today. We're going to maintain her 3-day/week outpatient schedule probably through the end of the year. In early 2008 we're hoping to be able to incorporate school into her routine therapy. In the meantime, she'll continue to attend Philosophy Club and, hopefully soon, start working on writing projects.
Yesterday Emily saw Dr. Yarnell for the first time since mid-June. He seemed pleased with how far she'd come and told her she looked pretty. In typical doctor fashion he then prroceeded to challenge me on a number of issues like, "is she really reading." After our appointment with Dr. Yarnell we went over to the Neuro ICU at St. Anthony's. Emily met Seana, one of the nurses who took such incredible care of her. Emily doesn't remember her days in the ICU, but she is curious and not at all stressed. It was an interesting visit - but the next time we visit Emily wants to walk in!
Last Tuesday we were thrilled when Emily was able to stand and maintain her balance for 10 seconds at a time multiple times. By last Thursday, she was able to stand and maintain her balance for 30 seconds at a time, multiple times. Yesterday, one week from last Tuesday, she was able to stand without assistance, get her balance, and make the steps necessary to transfer to the car, chair, etc. with no cues or help other than balance!
Today in PT she came from a sit to a stand with absolutely no help!
We met with Emily's doctors and therapy team today. We're going to maintain her 3-day/week outpatient schedule probably through the end of the year. In early 2008 we're hoping to be able to incorporate school into her routine therapy. In the meantime, she'll continue to attend Philosophy Club and, hopefully soon, start working on writing projects.
Yesterday Emily saw Dr. Yarnell for the first time since mid-June. He seemed pleased with how far she'd come and told her she looked pretty. In typical doctor fashion he then prroceeded to challenge me on a number of issues like, "is she really reading." After our appointment with Dr. Yarnell we went over to the Neuro ICU at St. Anthony's. Emily met Seana, one of the nurses who took such incredible care of her. Emily doesn't remember her days in the ICU, but she is curious and not at all stressed. It was an interesting visit - but the next time we visit Emily wants to walk in!
Tuesday, September 18, 2007
Emily had her first, full day of therapy in her AFO today. She hasn't once complained that it's uncomfortable and today she stood for 1/2 hour, biked for 1/2 hour, and then did a full hour of PT without complaint. She's moved from the EZ Stand, where she could watch TV, to the stall bars, which require much more balance and control on her part. She's also started reading while she's in the stall bars, which forces her to use that left hand and arm for something other than balance. Em doesn't like the magazine selection at Craig - too much gossip and fashion - so we've started taking in her Fantasy and Science Fiction magazines and she reads the short stories.
There was some concern that going from a cast/cast boot to the AFO might set Emily back in terms of her ability to stand and take steps. We've seen just the opposite. Today, one of my days at Craig, were the easiest car transfers I think I've ever done. She stood on her own and took steps without any problems. When she was walking in the parallel bars with Celeste, she had much less trouble controlling that right knee in the AFO than she ever did in the cast boot. Celeste then had her work on coming to a stand from her wheelchair and maintaining her balance standing. She needed a little help getting up to a stand, but was able to maintain her balance very well - once for over 20 seconds. When she first got to Craig she couldn't sit unassisted for 20 seconds, so that's quite an accomplishment. Celeste is very pleased with how much stronger Emily has gotten.
Tomorrow there's a barbecue for outpatients at Craig, so Emily will get to cook for Ken and introduce him to some of the outpatient friends she's made. I know he's looking forward to it.
All of Emily's therapists were thrilled when I reported that she'd done so well in Philosophy Club last week - following the discussion and contributing. We finish up at Craig at 2:00 on Thursday and are planning to be at DSA by 2:45. Thanks again to all of her friends for participating in Philosophy Club and welcoming her back.
There was some concern that going from a cast/cast boot to the AFO might set Emily back in terms of her ability to stand and take steps. We've seen just the opposite. Today, one of my days at Craig, were the easiest car transfers I think I've ever done. She stood on her own and took steps without any problems. When she was walking in the parallel bars with Celeste, she had much less trouble controlling that right knee in the AFO than she ever did in the cast boot. Celeste then had her work on coming to a stand from her wheelchair and maintaining her balance standing. She needed a little help getting up to a stand, but was able to maintain her balance very well - once for over 20 seconds. When she first got to Craig she couldn't sit unassisted for 20 seconds, so that's quite an accomplishment. Celeste is very pleased with how much stronger Emily has gotten.
Tomorrow there's a barbecue for outpatients at Craig, so Emily will get to cook for Ken and introduce him to some of the outpatient friends she's made. I know he's looking forward to it.
All of Emily's therapists were thrilled when I reported that she'd done so well in Philosophy Club last week - following the discussion and contributing. We finish up at Craig at 2:00 on Thursday and are planning to be at DSA by 2:45. Thanks again to all of her friends for participating in Philosophy Club and welcoming her back.
Thursday, September 13, 2007
For my 115th post I thought I'd provide a brief synopsis for any new visitors to the blog. On April 1, 2007, Emily was having fun skiing with her WP Freestyle teammates in the Railyard terrain park at Winter Park. It was the first time in months they'd been able to ski just for fun - not training for a race or working on their aerial tricks. On the second pass through the park, Emily went too high on one of the table-top jumps. The original estimates were 15 feet - several doctors have opined that it had to have been closer to 20. She overshot the landing, landed on her feet and feel forward, hard, into the concrete-like snow. Emily was flown by helicopter ambulance to St. Anthony's Central Hospital in Denver. She spent a month in the ICU; 3 weeks of that time in a coma. She was on a ventilator for almost 6 weeks. After close to 2 months in the hospital, she moved to Craig Hospital for rehab. She had nearly total paralysis on her right side from her brain injury. She spent 3 months in rehab and was discharged from Craig on August 17. She's been home for almost a month. She's still doing outpatient therapy at Craig, but we hope she'll eventually be able to return to school.
I haven't been as excited about a blog post in several weeks. Emily's made some significant progress this week. Yesterday, for the first time, she walked outside of the parallel bars with a weighted shopping cart. Today after a grueling 45 minutes of work standing, squatting, sitting, repeat, she walked across the Craig gym twice. It's incredible how everyone - patients and therapists alike stopped to watch and cheer her on.
Later this morning she was able to move her right arm consistently - she was pushing and pulling a device away from her and back again. She was also able to do side-sit push ups on the right side. It's significant movement in that arm.
This afternoon she was able to return to her high school - Denver School of the Arts - for Philosophy Club. She was able to follow the discussion and contribute thoughtfully - not as much as she might have contributed last year, but she contributed in a way that clearly showed she was following the discussion and understood the complexity of the topic. I'm so proud of the DSA students, teachers and other staff who welcomed Emily back. Many people who have sustained an injury like Emily's end up very lonely and isolated. It's a testament to Emily's friends that she hasn't had that experience - you've all been wonderful!
In the comments on the last post, Emily's friend Brendan shared an incredibly beautiful poem he wrote after seeing Emily shortly after the accident. Thank you so much Brendan. Brendan also sent a beautiful poem to Emily in the hospital shortly after the accident (before he'd visited), but I can't seem to locate our copy. I would love for people to be able to read that poem as well.
I haven't been as excited about a blog post in several weeks. Emily's made some significant progress this week. Yesterday, for the first time, she walked outside of the parallel bars with a weighted shopping cart. Today after a grueling 45 minutes of work standing, squatting, sitting, repeat, she walked across the Craig gym twice. It's incredible how everyone - patients and therapists alike stopped to watch and cheer her on.
Later this morning she was able to move her right arm consistently - she was pushing and pulling a device away from her and back again. She was also able to do side-sit push ups on the right side. It's significant movement in that arm.
This afternoon she was able to return to her high school - Denver School of the Arts - for Philosophy Club. She was able to follow the discussion and contribute thoughtfully - not as much as she might have contributed last year, but she contributed in a way that clearly showed she was following the discussion and understood the complexity of the topic. I'm so proud of the DSA students, teachers and other staff who welcomed Emily back. Many people who have sustained an injury like Emily's end up very lonely and isolated. It's a testament to Emily's friends that she hasn't had that experience - you've all been wonderful!
In the comments on the last post, Emily's friend Brendan shared an incredibly beautiful poem he wrote after seeing Emily shortly after the accident. Thank you so much Brendan. Brendan also sent a beautiful poem to Emily in the hospital shortly after the accident (before he'd visited), but I can't seem to locate our copy. I would love for people to be able to read that poem as well.
Sunday, September 9, 2007
So the new schedule seems to be working pretty well. Ken's with Emily Monday, Wednesday and every other Friday, and I'm with her Tuesday, Thursday and the alternating Friday. I think my first couple of days back in the office went well, all things considered.
In case you haven't figured this out - I'll be doing less frequent blog updates. Frankly, I'm busy and there's less "new" news to share.
We did get the results of Emily's first comprehensive cognitive testing last week. No surprise to those of use who know her, her language skills are good. She's creating new memories and recognizes that there are new memories, although sometimes she needs cues to retrieve those new memories. Her reading comprehension is good. Of all the things tested, most of her scores were at least "average" for her age group and many were well above average (we all know Emily wasn't "average" before the accident), that give her a strong base to work from. Her biggest issue is concentration and attention - so that's what we'll be focusing on the next couple of months.
We got the "go ahead" to return to Philosophy Club this Thursday, so we'll be there at 2:45. Emily's really excited about her first foray back to school.
In case you haven't figured this out - I'll be doing less frequent blog updates. Frankly, I'm busy and there's less "new" news to share.
We did get the results of Emily's first comprehensive cognitive testing last week. No surprise to those of use who know her, her language skills are good. She's creating new memories and recognizes that there are new memories, although sometimes she needs cues to retrieve those new memories. Her reading comprehension is good. Of all the things tested, most of her scores were at least "average" for her age group and many were well above average (we all know Emily wasn't "average" before the accident), that give her a strong base to work from. Her biggest issue is concentration and attention - so that's what we'll be focusing on the next couple of months.
We got the "go ahead" to return to Philosophy Club this Thursday, so we'll be there at 2:45. Emily's really excited about her first foray back to school.
Wednesday, September 5, 2007
I made it through my first day back in the office with (reasonably) flying colors. I think I even contributed a new perspective on an issue folks had been struggling with. Bless Steve for commenting after one meeting, "it's like you never left."
Emily and Ken similarly did well without me. Em had her first follow up appointment with her neurologist. Apparently, there's some concern on her therapy team that she's becoming overtired. We'll meet again as a family in two weeks to discuss the issue again. That aside, she managed to do a full day of therapy plus bike, standing and mat class, and she was in a fine mood when I got home. I know the folks at Craig are the experts, but it seems to me there's a place between teen tired and real tired that we need to shoot for. As I've told Em on several occasions, I watched her train too many weekends to buy the "I'm too tired" routine now.
Tomorrow Emily and I will meet with her Speech Therapist to go over her comprehensive cognitive testing. Suzanne has already told me she's seeing some very positive indications concerning Em's short-term memory, and the purpose of the tests is to identify what areas we need to work on in the coming months.
Emily and Ken similarly did well without me. Em had her first follow up appointment with her neurologist. Apparently, there's some concern on her therapy team that she's becoming overtired. We'll meet again as a family in two weeks to discuss the issue again. That aside, she managed to do a full day of therapy plus bike, standing and mat class, and she was in a fine mood when I got home. I know the folks at Craig are the experts, but it seems to me there's a place between teen tired and real tired that we need to shoot for. As I've told Em on several occasions, I watched her train too many weekends to buy the "I'm too tired" routine now.
Tomorrow Emily and I will meet with her Speech Therapist to go over her comprehensive cognitive testing. Suzanne has already told me she's seeing some very positive indications concerning Em's short-term memory, and the purpose of the tests is to identify what areas we need to work on in the coming months.
Sunday, September 2, 2007
The trip to Winter Park went really, really well. Many thanks to Laurie, Melissa, Freddy and Carol for making it such a special day. Em now has an autographed "Freddy Mooney" poster to add to her collection. Laurie gave Em a great camelback water botter complete with "Snow Princess," "Powder Princess," and "USSA" stickers. It's great! We had a great little picnic at the base of Winter Park - Emily was so happy to be there! We also saw other friends, which was great, and Hannah got to golf, maze and bungee jump. A good time was had by all. I think going back up to WP was more emotional for Ken and me than we'd expected, but still it was a good day. Em's determined to talk to her doctor on Wednesday about getting back on the mountain, even if that means a sit-ski for the first couple of months. I agree with Laurie that getting Em on the mountain could be the biggest motivator.
After our big day we came home, had take-out and ... crashed. It's amazing how tired we all are from an outing. Today we got up nice and fresh. Em did most of her PT exercises with Ken (I helped with a few), and then Em read the new Harry Potter while Ken walked the dogs and I worked out. A nice little bit of independence with a net (Hannah was available to come get me if Em needed anything). Then we headed off to see Pirates of the Carribean 3 at the $1 movie theater. It was fun that we got to see it on the big screen and fulfill our family pledge that no one got to see it before Emily.
Nice family dinner at home with a tired Em in bed by 8:00 (watching "Angel" on DVD - the last season with Spike).
I know Jamie in Providence reads this blog - personal notes are coming, but I wanted to say that the cookies were so sweet, but the special cd mix was incredible. I keep trying not to cry in front of Em, and then thoughtful people like you send her incredibly special notes and I lose it. I hope Jay is doing well - please know you're both in our prayers.
Today is the one-year anniversary of my rupturing my achilles. Ken dubbed it the "last day of the worst year, and the first day of the best year." Good thoughts.
After our big day we came home, had take-out and ... crashed. It's amazing how tired we all are from an outing. Today we got up nice and fresh. Em did most of her PT exercises with Ken (I helped with a few), and then Em read the new Harry Potter while Ken walked the dogs and I worked out. A nice little bit of independence with a net (Hannah was available to come get me if Em needed anything). Then we headed off to see Pirates of the Carribean 3 at the $1 movie theater. It was fun that we got to see it on the big screen and fulfill our family pledge that no one got to see it before Emily.
Nice family dinner at home with a tired Em in bed by 8:00 (watching "Angel" on DVD - the last season with Spike).
I know Jamie in Providence reads this blog - personal notes are coming, but I wanted to say that the cookies were so sweet, but the special cd mix was incredible. I keep trying not to cry in front of Em, and then thoughtful people like you send her incredibly special notes and I lose it. I hope Jay is doing well - please know you're both in our prayers.
Today is the one-year anniversary of my rupturing my achilles. Ken dubbed it the "last day of the worst year, and the first day of the best year." Good thoughts.
Thursday, August 30, 2007
Today's our last day of outpatient therapy for the week. It's been a pretty good week. Emily's working hard on increasing her strength and endurance in PT and doing a lot of testing in Speech. The cognitive testing is pretty frustrating for her, but it will give us a nice baseline to measure future improvements and she's doing just fine so far. We finally got her wheelchair - what a relief for all of us. She sits so much more comfortably in the better chair, and it's so much easier for me to load in the car. It even rolls better.
We're getting a pretty good routine going. She has a full exercise program for her "off" days. Hopefully we'll have her we'll have her mat table to add to her chair bike in the next few days. We've also got a new set of exercises to help "retrain" her right eye, which seems to be healing well.
Saturday is the 5-month anniversary of the accident. Next week I'm going to return to work, in the office, part time. Ken will start staying with Emily Monday, Wednesday and every other Friday. I'll continue to be with her on Tuesday, Thursday and the alternating Friday. Metro's been so good to us through this ordeal, it's time for me to go back. I'm optimistic it will work out well. Emily seems a little nervouse, but Ken will be with her when I'm not and we'll all be together every evening at home. Wish us luck with our next transition.
We're going to spend Saturday in Winter Park. We'll be around Sunday and Monday if anyone would like to visit.
Please add our friends Steve and Bob to your prayers.
Thanks and God bless,
We're getting a pretty good routine going. She has a full exercise program for her "off" days. Hopefully we'll have her we'll have her mat table to add to her chair bike in the next few days. We've also got a new set of exercises to help "retrain" her right eye, which seems to be healing well.
Saturday is the 5-month anniversary of the accident. Next week I'm going to return to work, in the office, part time. Ken will start staying with Emily Monday, Wednesday and every other Friday. I'll continue to be with her on Tuesday, Thursday and the alternating Friday. Metro's been so good to us through this ordeal, it's time for me to go back. I'm optimistic it will work out well. Emily seems a little nervouse, but Ken will be with her when I'm not and we'll all be together every evening at home. Wish us luck with our next transition.
We're going to spend Saturday in Winter Park. We'll be around Sunday and Monday if anyone would like to visit.
Please add our friends Steve and Bob to your prayers.
Thanks and God bless,
Sunday, August 26, 2007
Well it was quite a party. Thanks so much to all of you who were able to stop by. Emily had a wonderful time. We couldn't believe Ken's mom and sister made it all the way from Iowa - what a great surprise! It was so great for Em to see all of the people that have been supporting us through this ordeal, and it was especially good for her to be able to hang with her friends - ski team friends, DSA friends, Good Shepherd friends, even a Craig friend was able to stop by. Thanks to all of their parents for providing transportation to our house, we know it's not easy to find (as Father Neal and others made so clear!). She also loved seeing her teachers, former and current, that were able to stop by. Thank you all so much. Thanks to all the Winter Park coaches who were able to make it and of course thanks to all of our friends from Metro, the Fed, and our neighbors.
The food was fabulous thanks to Ron & Rome who did a wonderful job catering. If you liked the food, please stop by for leftovers. We seem to have an exceptionally large quantity of leftover marinated mushrooms, so seriously if you liked those drop us a note and we'll deliver!
Hannah deserves major credit for her help - entertaining isn't her thing and she rallied to help keep the kids who attended entertained. She's been such a trooper through all of this.
Emily showed incredible stamina yesterday, although she crashed pretty quickly after everyone left. We kept today pretty quiet and low-key. Tomorrow we're going to try to get into our off-day routine of exercises and other activities.
Thanks to everyone again.
The food was fabulous thanks to Ron & Rome who did a wonderful job catering. If you liked the food, please stop by for leftovers. We seem to have an exceptionally large quantity of leftover marinated mushrooms, so seriously if you liked those drop us a note and we'll deliver!
Hannah deserves major credit for her help - entertaining isn't her thing and she rallied to help keep the kids who attended entertained. She's been such a trooper through all of this.
Emily showed incredible stamina yesterday, although she crashed pretty quickly after everyone left. We kept today pretty quiet and low-key. Tomorrow we're going to try to get into our off-day routine of exercises and other activities.
Thanks to everyone again.
Friday, August 24, 2007
We had a good first week of outpatient therapy. Emily had a chance to meet and work with all of her new therapists and I think we hit the ground running. Amy, OT, Celeste, PT, and Suzanne, ST, are all wonderful, very experienced therapists. Amy has identified computer work and control of Emily's left hand as a priority. Celeste wants to focus, initially, on increasing the strength in Emily's quads. which will improve her balance, before we spend too much time trying to walk. Celeste is also worried about Emily getting enough aerobic exercise, so we ordered a very simple chair bike for home today. Em's cast came off on Thursday and she's already had her fitting for her custom AFO (ankle/leg brace) which will hopefully be ready on Tuesday. In the meantime she's making good use of one of my two cast boots, which is a big improvement over the cast because we can take it off to shower. (Isn't it handy that I had not one but two foot/ankle surgeries last year. Actually, come to think of it, we're fast approaching the 1-year anniversary of my ruptured achilles - what a lovely year it's been!!!)
Suzanne wants to do some repeat testing to see exactly where Emily is - her memory and ability to retrieve memories is so much better that I'm looking forward to the results. Once the testing is complete, Suzanne will coordinate with Donna, Craig's tutor, on what school work Emily can start working on.
Ken spent the morning at home alone with Emily kind of getting a feel for what it's like. There were some hiccups (what do you mean she didn't brush her teeth?!?), but all in all it went well. I took Hannah to school, relaxed at Starbucks with a latte' and read the paper, got a haircut and my first pedicure in a year!!!!!! Tonight we saw The Little Mermaid. We all thoroughly enjoyed it, but I think Emily enjoyed it the most - it was just such a visual extravaganza. We're also thinking of getting tickets for the DCTC season since (a) we need to keep busy on the weekends; and (b) we suddently have all this time to fill that used to be spent on skiing.
We really hope to see all of you at our open house tomorrow - we really want to say thank you for all of the support you've given us over the last (almost) 5 months. Please stop by, even for a minute, 2-7 tomorrow, 1841 South Spruce Street, Denver.
Suzanne wants to do some repeat testing to see exactly where Emily is - her memory and ability to retrieve memories is so much better that I'm looking forward to the results. Once the testing is complete, Suzanne will coordinate with Donna, Craig's tutor, on what school work Emily can start working on.
Ken spent the morning at home alone with Emily kind of getting a feel for what it's like. There were some hiccups (what do you mean she didn't brush her teeth?!?), but all in all it went well. I took Hannah to school, relaxed at Starbucks with a latte' and read the paper, got a haircut and my first pedicure in a year!!!!!! Tonight we saw The Little Mermaid. We all thoroughly enjoyed it, but I think Emily enjoyed it the most - it was just such a visual extravaganza. We're also thinking of getting tickets for the DCTC season since (a) we need to keep busy on the weekends; and (b) we suddently have all this time to fill that used to be spent on skiing.
We really hope to see all of you at our open house tomorrow - we really want to say thank you for all of the support you've given us over the last (almost) 5 months. Please stop by, even for a minute, 2-7 tomorrow, 1841 South Spruce Street, Denver.
Wednesday, August 22, 2007
We've got two days of outpatient therapy under our belts and I think we're getting the hang of it. In some ways it's a lot like inpatient except you don't sleep there. The big difference is you're just there for the therapy classes - there's no one to help you if you need anything not related to a particular therapy. The other big difference, so far, is that while my participation during inpatient therapy was met with different levels of welcome, now it seems to be required for all but speech. Visions of easing (sp?) back into work remotely are floating distantly away.
I have to admit that yesterday was a tough day. Ken and I had no idea that the first day of outpatient would be more of a family affair that he should have really been there for. In addition, Emily just wasn't herself yesterday - every transfer was difficult and her right leg seemed particularly uncooperative. As a consequence, by the end of the day I was really tired, sore and discouraged. All emotions that Emily picks up on in a heartbeat.
Today went much better. She was incredibly strong during our transfers and even found a way to balance herself standing in the downstairs powder room. We had one minor incident in the parking lot at Craig that led to a funny discussion of just how large the bruise on her butt would be if she sat down too soon. She got to work with Celeste, her new PT, today and I'm really encouraged. Celeste did a nice job of explaining to Emily what she needs to work on and that we'll work on a task, master it, then move on. I think Celeste brings the right balance of southern motherly concern and iron will. It's not like Emily has never worked hard before! She was already showing some significant independence in transfers after just one session.
Amy, Emily's outpatient OT, also hit the ground running. We swapped out the ever-changing arm brace for a new, much smaller model. Amy also did some electronic stimulation (EStim) on Emily's right arm and got some good response. EStim worked great at getting Em's right leg moving more consistently. The theory behind EStim is to give the connection between the brain and the affected limb a little extra jolt. I talked to Amy about whether or not voice-recognition software might be a good way for Emily to start writing again. Amy really wants to hold off on that - the best thing we can do for both of Em's hand/arms right now is get sensations going. The more her arms and hands try to talk to her brain the sooner new connections will form. Voice recognition software, in addition to being expensive, will actually hinder that process. Amy seems confident we can get things moving without resorting to that "crutch."
Emily is handling the hour long outpatient sessions pretty well. She gets tired but kept her attention really well in every session - although she sometimes gets distracted by the music in the gym. Tomorrow we have to go until 5:00 which will be a challenge, but we thrive on challenges (ha!).
One special note - we had long grain and wild rice for dinner tonight with our chicken kabobs (thank you Julie T. and all the friends that contributed to the Super Supper stockpile) and roasted peppers. We were almost finished with dinner when Ken and I simultaneously noticed that Emily was scooping her rice on her fork and eating it with NO tremor. Very, very cool.
We hope everyone can make it to the open house on Saturday. Emily's very excited to see everyone and we're looking forward to a chance to say thank you. Remember food & libations will be served!
I have to admit that yesterday was a tough day. Ken and I had no idea that the first day of outpatient would be more of a family affair that he should have really been there for. In addition, Emily just wasn't herself yesterday - every transfer was difficult and her right leg seemed particularly uncooperative. As a consequence, by the end of the day I was really tired, sore and discouraged. All emotions that Emily picks up on in a heartbeat.
Today went much better. She was incredibly strong during our transfers and even found a way to balance herself standing in the downstairs powder room. We had one minor incident in the parking lot at Craig that led to a funny discussion of just how large the bruise on her butt would be if she sat down too soon. She got to work with Celeste, her new PT, today and I'm really encouraged. Celeste did a nice job of explaining to Emily what she needs to work on and that we'll work on a task, master it, then move on. I think Celeste brings the right balance of southern motherly concern and iron will. It's not like Emily has never worked hard before! She was already showing some significant independence in transfers after just one session.
Amy, Emily's outpatient OT, also hit the ground running. We swapped out the ever-changing arm brace for a new, much smaller model. Amy also did some electronic stimulation (EStim) on Emily's right arm and got some good response. EStim worked great at getting Em's right leg moving more consistently. The theory behind EStim is to give the connection between the brain and the affected limb a little extra jolt. I talked to Amy about whether or not voice-recognition software might be a good way for Emily to start writing again. Amy really wants to hold off on that - the best thing we can do for both of Em's hand/arms right now is get sensations going. The more her arms and hands try to talk to her brain the sooner new connections will form. Voice recognition software, in addition to being expensive, will actually hinder that process. Amy seems confident we can get things moving without resorting to that "crutch."
Emily is handling the hour long outpatient sessions pretty well. She gets tired but kept her attention really well in every session - although she sometimes gets distracted by the music in the gym. Tomorrow we have to go until 5:00 which will be a challenge, but we thrive on challenges (ha!).
One special note - we had long grain and wild rice for dinner tonight with our chicken kabobs (thank you Julie T. and all the friends that contributed to the Super Supper stockpile) and roasted peppers. We were almost finished with dinner when Ken and I simultaneously noticed that Emily was scooping her rice on her fork and eating it with NO tremor. Very, very cool.
We hope everyone can make it to the open house on Saturday. Emily's very excited to see everyone and we're looking forward to a chance to say thank you. Remember food & libations will be served!
Monday, August 20, 2007
After just a couple days at home we're seeing changes. Emily modulates her voice much better and she's using a more complex vocabulary. She's even arguing with her sister again.
Physically, transfers from her chair to the car, and vice versa, have become too hard with the slide board. It's actually easier to have her stand, take a couple steps and sit. She's getting better balanced and much more confident taking steps during her transfers. Every day small improvements - even Emily agreed with that tonight.
Physically, transfers from her chair to the car, and vice versa, have become too hard with the slide board. It's actually easier to have her stand, take a couple steps and sit. She's getting better balanced and much more confident taking steps during her transfers. Every day small improvements - even Emily agreed with that tonight.
Our first weekend at home went very well. I'm not sure if Ken would agree, but things went much more smoothly than I had actually expected. Emily really seems to enjoy sleeping in her own room! We spent Saturday kind of getting settled and Emily got a much needed haircut. Many thanks to Alan and the other staff at Antoine du Chez - you were so wonderful with Emily and accommodating of her special needs. Her hair looks absolutely beautiful. We finished out the day with Mass, a nice dinner, and one of Emily's favorite movies.
Sunday was a busy day. Emily got to hear Steve and Rebecca perform at Montview - it was beautiful. While we were at Montview, Emily got to meet Ann the healing minister at Montview and Chaplain at St. Anthony's. Ann sat with me when Emily first got to St. A's and visited us several times while we were there. Of course Emily didn't remember her, but she was a great source of comfort to Ken and me and she was so pleased to see how much progress Emily had made.
Emily then went off to the movies with her friends from DSA. Brendan, Dylan, Shiloh and Peaches we can never tell you how much this meant to Emily. She's been so excited about it for the last week+. Thank you so much for helping her have a few hours of normal teenage fun. I really hope we can schedule more movies and other fun things with Em's friends in the future.
We finished out the day with a great dinner with Uncle Gary. It actuallly felt good to cook again, although I did tell Emily she shouldn't expect to eat this well every night.
One more day to rest and get settled and then it's back to Craig to start outpatient.
Sunday was a busy day. Emily got to hear Steve and Rebecca perform at Montview - it was beautiful. While we were at Montview, Emily got to meet Ann the healing minister at Montview and Chaplain at St. Anthony's. Ann sat with me when Emily first got to St. A's and visited us several times while we were there. Of course Emily didn't remember her, but she was a great source of comfort to Ken and me and she was so pleased to see how much progress Emily had made.
Emily then went off to the movies with her friends from DSA. Brendan, Dylan, Shiloh and Peaches we can never tell you how much this meant to Emily. She's been so excited about it for the last week+. Thank you so much for helping her have a few hours of normal teenage fun. I really hope we can schedule more movies and other fun things with Em's friends in the future.
We finished out the day with a great dinner with Uncle Gary. It actuallly felt good to cook again, although I did tell Emily she shouldn't expect to eat this well every night.
One more day to rest and get settled and then it's back to Craig to start outpatient.
Saturday, August 18, 2007
Well we made it home. Emily's last day at Craig was fun - she was so excited and all of the other patients and staff were so excited for her. Ken was worried I'd gotten too big a cake, and in the end we could have used an even bigger one. We owe so much to the Craig staff and the other families. Emily's made such huge progress with their help and support. Thanks too to Hendo for coming by on Em's last day - it meant so much to her and she loved being able to introduce you to Katie.
We got home about 4:30 and had the traditional homecoming gala of salad and frozen pizza. It was so nice to have dinner knowing we didn't have to rush back to Craig. Hannah was at a party with a friend, so we're going to have the real welcome home dinner tonight. Many thanks to all who sent contributions to our neighbor Julie for pre-made dinners - Julie's sons delivered over a week's worth of food yesterday that will be a big help during what's bound to be a period of adjustment.
The home set up seems to work really well. We found an inexpensive transport wheelchair at a medical supply store near home that we can just keep upstairs. It's smaller and actually works better in her room and the bathroom. Spike slept with Emily much of the night - both dogs seem so relieved to have her home. She's sleeping peacefully as I write this. I was just sitting with her thinking how good it must feel to sleep with a window open and fresh air after all these months.
We're going to spend the day today getting her room organized now that she's home - we have to find room for Buffy, Spike and Captain Jack along with all of the other wonderful art and angels that everyone's given her. We're planning on attending 4:00 Mass at Good Shepherd and the 10:00 service at Montview Presbyterian tomorrow - we've got a lot to thank God for (and Steve's performing at Montview tomorrow).
We'll be e-mailing flyers to as many people as possible about our open house next Saturday. We have so many people to thank and we know there's lots of folks that would like to see Emily.
We got home about 4:30 and had the traditional homecoming gala of salad and frozen pizza. It was so nice to have dinner knowing we didn't have to rush back to Craig. Hannah was at a party with a friend, so we're going to have the real welcome home dinner tonight. Many thanks to all who sent contributions to our neighbor Julie for pre-made dinners - Julie's sons delivered over a week's worth of food yesterday that will be a big help during what's bound to be a period of adjustment.
The home set up seems to work really well. We found an inexpensive transport wheelchair at a medical supply store near home that we can just keep upstairs. It's smaller and actually works better in her room and the bathroom. Spike slept with Emily much of the night - both dogs seem so relieved to have her home. She's sleeping peacefully as I write this. I was just sitting with her thinking how good it must feel to sleep with a window open and fresh air after all these months.
We're going to spend the day today getting her room organized now that she's home - we have to find room for Buffy, Spike and Captain Jack along with all of the other wonderful art and angels that everyone's given her. We're planning on attending 4:00 Mass at Good Shepherd and the 10:00 service at Montview Presbyterian tomorrow - we've got a lot to thank God for (and Steve's performing at Montview tomorrow).
We'll be e-mailing flyers to as many people as possible about our open house next Saturday. We have so many people to thank and we know there's lots of folks that would like to see Emily.
Thursday, August 16, 2007
Emily has really become the sweetheart of Craig - so many people care so much for her. Tomorrow's the day - she's SOOOO excited. We're just going to enjoy being a family again tomorrow night and Saturday, and then Sunday Emily's off to the movies with her friends. Special note to Shiloh, Brendan, Adam, et al - she's really, really looking forrward to the movie on Sunday, thank you all so much for planning it.
I mentioned in an earlier post that we were planning an open house to give everyone a chance to see Emily and as our small way of thanking everyone for their support. Please join us anytime between 2:00 - 7:00 p.m. on Saturday, August 25. Our address is 1841 South Spruce Street in Denver. Food and libations will be provided. We really want to thank everyone that has helped us get to this point, and by then we'll have a week of outpatient therapy under our belts and we'll be better able to let you know good times to visit and perhaps help keep Emily company. Please, please join us in our celebration of Emily's recovery - you've all been a very big part of it.
I mentioned in an earlier post that we were planning an open house to give everyone a chance to see Emily and as our small way of thanking everyone for their support. Please join us anytime between 2:00 - 7:00 p.m. on Saturday, August 25. Our address is 1841 South Spruce Street in Denver. Food and libations will be provided. We really want to thank everyone that has helped us get to this point, and by then we'll have a week of outpatient therapy under our belts and we'll be better able to let you know good times to visit and perhaps help keep Emily company. Please, please join us in our celebration of Emily's recovery - you've all been a very big part of it.
Wednesday, August 15, 2007
Emily won first place for a solo performance at tonight's talent show at Craig. When you think about the fact that she was admitted to Craig on May 21 and didn't speak for close to a month, it's pretty amazing that she was able, and willing, to get up on a stage tonight and read two of her poems. I think her heart and her courage were a big part of her win. We also owe so much to Katie, Em's Speech Therapist, for all of her hard work getting Emily to this point. Here are the poems Emily read:
Odyssey
the journey of your life.
the challenges you face,
the insurmountable odds,
don’t always have to be faced
from the prow of a ship
Emily Boldt
Hope
watch as the baby bird
Opens his wings and tries to fly
mother Prays he finds the wind
his wholE life ahead of him
Emily Boldt
We celebrated her Talent Show win and upcoming homecoming at a great little Italian restaurant near Craig - Undici at the southeast corner of Downing and old Hampden. The food was great, the service was excellent and they were very accommodating.
I think we've got Emily's outpatient schedule set - she'll be doing outpatient therapy Tuesday, Wednesday and Thursday each week. So she'll come home on Friday and be back at Craig next Tuesday. Lots of work ahead, but she's come so far.
Odyssey
the journey of your life.
the challenges you face,
the insurmountable odds,
don’t always have to be faced
from the prow of a ship
Emily Boldt
Hope
watch as the baby bird
Opens his wings and tries to fly
mother Prays he finds the wind
his wholE life ahead of him
Emily Boldt
We celebrated her Talent Show win and upcoming homecoming at a great little Italian restaurant near Craig - Undici at the southeast corner of Downing and old Hampden. The food was great, the service was excellent and they were very accommodating.
I think we've got Emily's outpatient schedule set - she'll be doing outpatient therapy Tuesday, Wednesday and Thursday each week. So she'll come home on Friday and be back at Craig next Tuesday. Lots of work ahead, but she's come so far.
Tuesday, August 14, 2007
So far this week has been spent primarily on discharge testing except in Speech. Katie, Emily's Speech Therapist, has been spending a lot of time this week on inflection - and she assigns homework. Emily's homework from this morning's session was to sing the lyrics of songs she knew. We decided to provide live entertainment in the gym this afternoon by singing along with The Fray while Emily rode the exercise bike. She had the benefit of her Ipod, I had to work from memory. Thankfully the gym was pretty empty. Katie did mention today that Emily's responses were much faster, which is a really good sign.
I meet tomorrow afternoon with Emily's therapy team to discuss her outpatient therapy. Right now we don't know which days or which therapists will be working with Emily - it's a whole new team for outpatient. We're hoping to keep Emily in as many of the group therapies - speech group and mat class - as we can to maximize her therapy time. We all want to get started on outpatient right away next week - Emily's anxious to keep working on walking and she really wants to get back to school.
Emily will be reading a couple of her poems at the Craig talent show tomorrow night. It should be a lot of fun and a great way for patients to demonstrate their talents, with or without injuries. Emily's planning to read her poems "Odyssey" and "Hope." They're both poems she wrote before the accident, but she now remembers writing both of them and is able to read them aloud. Another patient, Tommy Urbanski the former professional wrestler, will be playing the guitar despite being a quadriplegic. I'm sure there will be lots of other inspiring performances.
I meet tomorrow afternoon with Emily's therapy team to discuss her outpatient therapy. Right now we don't know which days or which therapists will be working with Emily - it's a whole new team for outpatient. We're hoping to keep Emily in as many of the group therapies - speech group and mat class - as we can to maximize her therapy time. We all want to get started on outpatient right away next week - Emily's anxious to keep working on walking and she really wants to get back to school.
Emily will be reading a couple of her poems at the Craig talent show tomorrow night. It should be a lot of fun and a great way for patients to demonstrate their talents, with or without injuries. Emily's planning to read her poems "Odyssey" and "Hope." They're both poems she wrote before the accident, but she now remembers writing both of them and is able to read them aloud. Another patient, Tommy Urbanski the former professional wrestler, will be playing the guitar despite being a quadriplegic. I'm sure there will be lots of other inspiring performances.
Saturday, August 11, 2007
One of the things that has continually amazed Emily's therapists and me in her physical recovery is her ability to make huge strides in a short amount of time. We've seen this throughout her 3-month stay at Craig. She tries something new and it's really hard. They try the same thing the next day and she's much stronger. Based on my reading on neuroplasticity, it is my personal opinion that the first time she tries to learn something physical again - like sitting, standing or walking - her brain "wakes up" and remembers how to talk to that particular muscle group or limb and then her innate strength and determination kick in. This last week was no exception.
On Monday we were thrilled that she was taking single steps forward and back out and in with her left foot. By Tuesday, she'd added the same movements, more tentatively, with her right. Wednesday she was able to take several steps forward and back. Thursday she very tentatively walked the length of the parallel bars forward, backward and sideways. By yesterday she was walking faster and more confidently, her gait and her balance were significantly improved, she wasn't depending as much on her left hand on the bar, and she walked down the bars, turned around and walked back - twice - in one 30 minute session.
I'm hopeful we'll see the same kind of steady improvement with her right arm. Yesterday we tried some new weight-bearing approaches to the right arm and by the end of the session she was able to purposely bend her elbow and bring her hand to her face and hold her arm in a much more natural position. I've been reading about a neuroscientist who uses a "mirror box" to help stroke victims with paralysis do mental exercises to help regain the use of their damaged arms. The idea is to put their good arm in the mirror box, which makes the good arm appear to them visually to be there bad arm, and then think about moving their bad arm while they watch their good arm move. Opening this neuronal pathway seems to pave the way for more success with other therapies that force the patient to use the bad arm.
Sigrid as usual raises some very good points with regard to emotional healing and therapy. We have been blessed that Emily's brain injury has not caused any damage to her emotional and impulse control areas, but we have seen patients where it has. Since Craig will not accept patients younger than 15 (yes we barely made the cut), their approaches are geared to more "adult" brains. This doesn't mean that Emily never has her moments, because she does. Sometimes I think having Ken and me around to vent her frustration on helps keep her motivated with her therapists. We've also found that adding an element of competition gets her going - she's taken some interesting dives in balloon volleyball and managed to sit on a balance ball for 45 minutes yesterday with very little help while trying to crush the guys at cards.
Emily will be home during the day today and tomorrow. Please feel free to visit here. She's in class until 4:00 every day next week, as usual, but visitors are welcome any time after 4:00. She'll come home after her classes next Friday and we'll start outpatient therapy the following week. We'll have a going away celebration at Craig next Friday about 2:45. We're also planning an open house to welcome Emily home and thank all of you for your support - more details will be posted soon.
On Monday we were thrilled that she was taking single steps forward and back out and in with her left foot. By Tuesday, she'd added the same movements, more tentatively, with her right. Wednesday she was able to take several steps forward and back. Thursday she very tentatively walked the length of the parallel bars forward, backward and sideways. By yesterday she was walking faster and more confidently, her gait and her balance were significantly improved, she wasn't depending as much on her left hand on the bar, and she walked down the bars, turned around and walked back - twice - in one 30 minute session.
I'm hopeful we'll see the same kind of steady improvement with her right arm. Yesterday we tried some new weight-bearing approaches to the right arm and by the end of the session she was able to purposely bend her elbow and bring her hand to her face and hold her arm in a much more natural position. I've been reading about a neuroscientist who uses a "mirror box" to help stroke victims with paralysis do mental exercises to help regain the use of their damaged arms. The idea is to put their good arm in the mirror box, which makes the good arm appear to them visually to be there bad arm, and then think about moving their bad arm while they watch their good arm move. Opening this neuronal pathway seems to pave the way for more success with other therapies that force the patient to use the bad arm.
Sigrid as usual raises some very good points with regard to emotional healing and therapy. We have been blessed that Emily's brain injury has not caused any damage to her emotional and impulse control areas, but we have seen patients where it has. Since Craig will not accept patients younger than 15 (yes we barely made the cut), their approaches are geared to more "adult" brains. This doesn't mean that Emily never has her moments, because she does. Sometimes I think having Ken and me around to vent her frustration on helps keep her motivated with her therapists. We've also found that adding an element of competition gets her going - she's taken some interesting dives in balloon volleyball and managed to sit on a balance ball for 45 minutes yesterday with very little help while trying to crush the guys at cards.
Emily will be home during the day today and tomorrow. Please feel free to visit here. She's in class until 4:00 every day next week, as usual, but visitors are welcome any time after 4:00. She'll come home after her classes next Friday and we'll start outpatient therapy the following week. We'll have a going away celebration at Craig next Friday about 2:45. We're also planning an open house to welcome Emily home and thank all of you for your support - more details will be posted soon.
Thursday, August 9, 2007
I just realized I've done 100 posts (this will be 101). Emily comes home in a week - exactly 4-1/2 months since the accident. How far we've come - she's awake, she's talking pretty much normally with a slightly higher pitch, she's come so far.
Today she walked the entire length of the parallel bars front, back and then side ways left and right. Two full laps. She also did 1/2 hour of squats and leg lifts and then fixed lunch with her therapists (she makes a mean burger). It was really an empowering day.
On the downside, there's still a lot of concern about her right arm. To keep it functional we've got to keep all of the muscles stretched. Her OT's want to look at re-casting that arm or making custom splints. It's so easy to get caught up on all of the other positives that we lose track of this one big negative - but her brain is still healing and we can try other therapies to get the right arm moving.
Mrs. Clark is back and visited Emily today. She was so happy - we're still hoping she can start writing again for credit even if she can't start her academic classes again for a few months. Her whole outpatient schedule will be worked out in the next week.
Today she walked the entire length of the parallel bars front, back and then side ways left and right. Two full laps. She also did 1/2 hour of squats and leg lifts and then fixed lunch with her therapists (she makes a mean burger). It was really an empowering day.
On the downside, there's still a lot of concern about her right arm. To keep it functional we've got to keep all of the muscles stretched. Her OT's want to look at re-casting that arm or making custom splints. It's so easy to get caught up on all of the other positives that we lose track of this one big negative - but her brain is still healing and we can try other therapies to get the right arm moving.
Mrs. Clark is back and visited Emily today. She was so happy - we're still hoping she can start writing again for credit even if she can't start her academic classes again for a few months. Her whole outpatient schedule will be worked out in the next week.
Tuesday, August 7, 2007
So Emily now spontanteously breaks into Fray songs throughout the day - guess she had a good time a the concert Sunday night!
She and Caroline enjoyed "The Bourne Ultimatum" last evening. Kudos to Caroline for going on a Craig outing with Emily, I'm sure it was a little intimidating.
Emily was a little better rested today and had some good classes this morning. She has a new assignment in Speech - she has to come up with 4 different sentences using the same word, such as school or shoes, in 1 minute. The exercise is intended to help her think and retrieve information more quickly.
For PT today she stood in the EZ Stand for 20 minutes, biked for 45 minutes (7.4 km), and then worked with her therapist for an hour. Laura is really trying to help Emily be more independent in her transfers to and from her chair. We worked on a couple of actual transfers, and then Emily and Laura spent a good half hour working in the parallel bars - coming to a stand and sitting back down, coming to a stand and doing standing squats, shifting her weight from her left to right foot, moving her feet, and ultimately taking 7 steps up and back. Big gains.
Right now she's cooking in Project Group. I don't know what they're making, but the ingredients seem to include bananas, sugar and cream cheese. Emily's scheduled for a quiet night at Craig tonight - massage and shower, so hopefully by tomorrow she'll be fully recovered from The Fray concert.
She and Caroline enjoyed "The Bourne Ultimatum" last evening. Kudos to Caroline for going on a Craig outing with Emily, I'm sure it was a little intimidating.
Emily was a little better rested today and had some good classes this morning. She has a new assignment in Speech - she has to come up with 4 different sentences using the same word, such as school or shoes, in 1 minute. The exercise is intended to help her think and retrieve information more quickly.
For PT today she stood in the EZ Stand for 20 minutes, biked for 45 minutes (7.4 km), and then worked with her therapist for an hour. Laura is really trying to help Emily be more independent in her transfers to and from her chair. We worked on a couple of actual transfers, and then Emily and Laura spent a good half hour working in the parallel bars - coming to a stand and sitting back down, coming to a stand and doing standing squats, shifting her weight from her left to right foot, moving her feet, and ultimately taking 7 steps up and back. Big gains.
Right now she's cooking in Project Group. I don't know what they're making, but the ingredients seem to include bananas, sugar and cream cheese. Emily's scheduled for a quiet night at Craig tonight - massage and shower, so hopefully by tomorrow she'll be fully recovered from The Fray concert.
Monday, August 6, 2007
After a rough start and an encounter with an incredibly unpleasant Ticketmaster employee at the Red Rocks Will Call, we had a great time at The Fray - of couse, that is right up until it started pouring rain. I'd particularly like to thank all of the very nice security people on detail near the stage - they could not have been nicer or more helpful, especially since we didn't have handicap-accessible designated seats. The two local bands that opened were good and The Fray were awesome.
Emily's back in class and working hard today - despite not getting to sleep until almost 12:30 a.m. She's got a couple hour break at lunch today, so I'm hoping she'll nap. She and her friend Caroline are off to the movies with the Craig T-Rec staff this afternoon. It's nice to see her have a bit of a social life after all these months in the hospital.
Thanks much to Dave and Maureen for the (as usual) incredible dinner last night and to Brendan for providing dessert. We're glad the plans for the DSA trip to the movies seems to have worked out - that's Emily's first weekend out of the hospital, so it will work great for us.
Emily's back in class and working hard today - despite not getting to sleep until almost 12:30 a.m. She's got a couple hour break at lunch today, so I'm hoping she'll nap. She and her friend Caroline are off to the movies with the Craig T-Rec staff this afternoon. It's nice to see her have a bit of a social life after all these months in the hospital.
Thanks much to Dave and Maureen for the (as usual) incredible dinner last night and to Brendan for providing dessert. We're glad the plans for the DSA trip to the movies seems to have worked out - that's Emily's first weekend out of the hospital, so it will work great for us.
Saturday, August 4, 2007
Emily had a great time at Hobi Day yesterday. She got to go for a ride on a 20-foot Hobi sailboat, listen to tunes on the beach, eat barbecue and just generally chill. It's a truly phenomenal event. We really hope to be able to volunteer next year.
Emily's home today - enjoying some time in her room for the first time since March 31! The new stair lift works great and the new carpet, while not as easy to maneuver as the hardwood floors, is much easier than the old carpet.
Brendan - Emily is really looking forward to seeing you tomorrow. Because she and I are going to The Fray at Red Rocks tomorrow night, we'll need to head back to Craig to get ready about 4:00. Cookies are always welcome! Baking is a great new hobby. Is Dylan going to come with you? Emily was excited when I told her that you were planning to bring Dylan along for your next visit.
Emily would love to go see The Simpsons Movie with all of her friends from DSA. Just let us know what time and which theater. I'm sure we could even make a weeknight work.
Remember - visitors are welcome any weeknight after 4:00.
Emily's home today - enjoying some time in her room for the first time since March 31! The new stair lift works great and the new carpet, while not as easy to maneuver as the hardwood floors, is much easier than the old carpet.
Brendan - Emily is really looking forward to seeing you tomorrow. Because she and I are going to The Fray at Red Rocks tomorrow night, we'll need to head back to Craig to get ready about 4:00. Cookies are always welcome! Baking is a great new hobby. Is Dylan going to come with you? Emily was excited when I told her that you were planning to bring Dylan along for your next visit.
Emily would love to go see The Simpsons Movie with all of her friends from DSA. Just let us know what time and which theater. I'm sure we could even make a weeknight work.
Remember - visitors are welcome any weeknight after 4:00.
Thursday, August 2, 2007
Sigrid you are just too cute - we'd actually already decided that since Emily had to do all of the front, back, out, in with one foot she was obviously waltzing! Today, by the way, while in the parallel bars Emily took a, yes one single but still a, step forward with her right foot!!!! She was doing some rocking left to right to shift weight from her left leg to her right. This re-learning how to walk is hard business. We went to a presentation tonight on caretaker dogs - one of the therapy dogs at Craig is a "failed" caretaker (he had a problem chasing cats), and a woman from his organization suggested it might be something we consider for Emily if she has balance issues long-term. Hopefully not, but what a great option - especially given what a dog lover Emily is.
I thought I'd give folks a picture of just how hard Emily works. Between 9:30 and 11:30 today Emily had (1) stood in the EZ stand for 1/2 hour; (2) spent about 15-20 minutes working on standing, weight shifting and taking steps in the parallel bars; and (3) spent 1/2 hour standing in the stall table moving her right arm up and down one of those old fashion document stands - at which point she turned deathly white and almost passed out! Of course, I once again had stepped away for a few minutes to say goodbye to a patient that was discharged today (I'm beginning to think God's trying to tell me something), but I got back to the gym as 3 people are slowly lowering Em to her chair while one stood in front. Seems she turned deathly white and then announced she was getting dizzy. Basically an hour and a half is a long time for someone who's been in bed or a wheelchair for much of the last 4 months, and adding in working with her weak arm while she stood was just a bit much. By the way, she had a 1/2 hour of speech therapy in that 2-hour period too.
We did end up moving yesterday. Emily is now in room 220, which is in Craig East - across the bridge over Clarkson Street from where all of her previous rooms have been. She still does therapy and has lunch and dinner on 2West. I was a little nervous yesterday, but in the end the move has been great. The patients on 2East, by and large, are pretty stable and the mood is just much calmer. Emily has a roommate - a lovely older woman named Judy who stopped me on the bridge today to tell me how good it is for her to have Emily and her wonderful smile there to encourage her. She even enjoyed the morning music with Emily singing along.
Tomorrow is the 27th Annual Craig Hobi Day at Cherry Creek Reservoir. This event started many years ago when a therapist who worked at Craig had a Hobi and thought it would be fun for the patients to go sailing. It's a really big deal. Em will spend much of the day at Cherry Creek, but I can't imagine she won't be back at Craig by 2 or 3 in the afternoon ready for visitors. Her friend Julie has been a wonder and visited every afternoon this week, but she's leaving on vacation tomorrow so we're hoping other friends will pick up the slack. Julie's afternoon visits have been so good for Emily.
The stair lift was installed today and the new, wheelchair workable, carpet will be layed tomorrow. This weekend when Emily's home she'll actually be able to go up to her room. Speaking of weekend - on Sunday night Emily and I will be going to see The Fray at Red Rocks courtesy of KBCO 97.3 FM. I won the tickets by stumping the Sage of World Class Rock a week ago. The folks at KBCO know Emily's story now, so I'm hoping they help me make it a night to remember.
On a final note - yesterday was the 4 month anniversary of the accident.
I thought I'd give folks a picture of just how hard Emily works. Between 9:30 and 11:30 today Emily had (1) stood in the EZ stand for 1/2 hour; (2) spent about 15-20 minutes working on standing, weight shifting and taking steps in the parallel bars; and (3) spent 1/2 hour standing in the stall table moving her right arm up and down one of those old fashion document stands - at which point she turned deathly white and almost passed out! Of course, I once again had stepped away for a few minutes to say goodbye to a patient that was discharged today (I'm beginning to think God's trying to tell me something), but I got back to the gym as 3 people are slowly lowering Em to her chair while one stood in front. Seems she turned deathly white and then announced she was getting dizzy. Basically an hour and a half is a long time for someone who's been in bed or a wheelchair for much of the last 4 months, and adding in working with her weak arm while she stood was just a bit much. By the way, she had a 1/2 hour of speech therapy in that 2-hour period too.
We did end up moving yesterday. Emily is now in room 220, which is in Craig East - across the bridge over Clarkson Street from where all of her previous rooms have been. She still does therapy and has lunch and dinner on 2West. I was a little nervous yesterday, but in the end the move has been great. The patients on 2East, by and large, are pretty stable and the mood is just much calmer. Emily has a roommate - a lovely older woman named Judy who stopped me on the bridge today to tell me how good it is for her to have Emily and her wonderful smile there to encourage her. She even enjoyed the morning music with Emily singing along.
Tomorrow is the 27th Annual Craig Hobi Day at Cherry Creek Reservoir. This event started many years ago when a therapist who worked at Craig had a Hobi and thought it would be fun for the patients to go sailing. It's a really big deal. Em will spend much of the day at Cherry Creek, but I can't imagine she won't be back at Craig by 2 or 3 in the afternoon ready for visitors. Her friend Julie has been a wonder and visited every afternoon this week, but she's leaving on vacation tomorrow so we're hoping other friends will pick up the slack. Julie's afternoon visits have been so good for Emily.
The stair lift was installed today and the new, wheelchair workable, carpet will be layed tomorrow. This weekend when Emily's home she'll actually be able to go up to her room. Speaking of weekend - on Sunday night Emily and I will be going to see The Fray at Red Rocks courtesy of KBCO 97.3 FM. I won the tickets by stumping the Sage of World Class Rock a week ago. The folks at KBCO know Emily's story now, so I'm hoping they help me make it a night to remember.
On a final note - yesterday was the 4 month anniversary of the accident.
Tuesday, July 31, 2007
Emily worked really, really hard today. She got to stand in the EZ Stand for the first time in about 10 days and rode the exercise bike for almost 1/2 hour. It occurred to me today that she hasn't complained that her foot or ankle hurts since she started being able to use that leg again yesterday. In OT she tried a new device to help with her typing and it worked really well. Later in the day she was able to send an e-mail to one of her friends with very little help.
Probably the most exciting thing today was PT. Emily and her new therapist started out working on coming to a mid-way stand from a sit and holding it, which is really, really hard. Then they tried some standing in the parallel bars - Em was doing so well that her PT had her try taking steps with her left foot - she stepped forward, back, out and in. It was really cool to watch. She also worked on coming up to her toes to pivot and moving her left foot out and back heel-toe-heel-toe.
Emily's friend Julie visited again this afternoon - she's such a good friend and her visits mean so much to Emily. Emily's Devo coach Mike visited again today too, so she was in a very good mood this evening.
Emily may move over to the transitional rooms in Craig East later this week. She'll still do all of her therapy and have meals in the 2West gym, her room will just be across the bridge. We'll be sure to let everyone know where to find her.
Probably the most exciting thing today was PT. Emily and her new therapist started out working on coming to a mid-way stand from a sit and holding it, which is really, really hard. Then they tried some standing in the parallel bars - Em was doing so well that her PT had her try taking steps with her left foot - she stepped forward, back, out and in. It was really cool to watch. She also worked on coming up to her toes to pivot and moving her left foot out and back heel-toe-heel-toe.
Emily's friend Julie visited again this afternoon - she's such a good friend and her visits mean so much to Emily. Emily's Devo coach Mike visited again today too, so she was in a very good mood this evening.
Emily may move over to the transitional rooms in Craig East later this week. She'll still do all of her therapy and have meals in the 2West gym, her room will just be across the bridge. We'll be sure to let everyone know where to find her.
Monday, July 30, 2007
The weekend had its ups and downs. Emily didn't sleep well Friday night and was quite cranky when I got to the hospital Saturday morning. While I was cleaning up our breakfast dishes, Emily went and found her tech and convinced her she needed to use the bathroom. Two minutes later I walk out of the gym to see lights flasing and another tech going into the bathroom. When I open the door, I find Emily and her tech on the floor. She spent the rest of the day with her right foot elevated while her nurse and I watched closely for any signs the surgical areas had been hurt in the fall. Ultimately the foot/ankle were fine, but she had a very stiff back and sore shoulder. The next person who suggests I don't need to be at the hospital all of the time may get an ear full. Late Saturday we moved Emily to another, quieter room, and she slept better and was in a much better mood on Sunday.
She spent the day at home with grandma and grandpa Sunday. She even went with us to walk the dogs (close to a 2 mile walk). We had a nice day and a delicious dinner thanks to our friend JoAnn.
Emily had a good day of classes today. She needed a lot of cueing in Speech this morning to remember what she'd done at home yesterday, but by this afternoon she was spontaneously remembering very detailed stuff. She had a PT/OT Co-Treat this morning, and Laura and Robyn had her doing some nice standing and weight-bearing on both her right leg and her right hand/arm. Robyn was doing some movement exercises with her right arm and she was engaging her deltoid and doing a lot of the up and down movement with her right arm on her own. She did ask me today if she'd had Botox in her right hand. When I said "yes," she asked why it wasn't working. I think she's getting pretty frustrated with it. She did more coming from a sit to a stand work in PT this afternoon and then finished the day with her weekly massage.
Her friend Julie came by to visit late this afternoon and they were enjoying "Avatar" on dvd when I left. Emily is always so happy when her friends visit. All-in-all not a bad day.
She spent the day at home with grandma and grandpa Sunday. She even went with us to walk the dogs (close to a 2 mile walk). We had a nice day and a delicious dinner thanks to our friend JoAnn.
Emily had a good day of classes today. She needed a lot of cueing in Speech this morning to remember what she'd done at home yesterday, but by this afternoon she was spontaneously remembering very detailed stuff. She had a PT/OT Co-Treat this morning, and Laura and Robyn had her doing some nice standing and weight-bearing on both her right leg and her right hand/arm. Robyn was doing some movement exercises with her right arm and she was engaging her deltoid and doing a lot of the up and down movement with her right arm on her own. She did ask me today if she'd had Botox in her right hand. When I said "yes," she asked why it wasn't working. I think she's getting pretty frustrated with it. She did more coming from a sit to a stand work in PT this afternoon and then finished the day with her weekly massage.
Her friend Julie came by to visit late this afternoon and they were enjoying "Avatar" on dvd when I left. Emily is always so happy when her friends visit. All-in-all not a bad day.
Friday, July 27, 2007
The day following surgery is almost always worse than the actual day of the surgery and today was no exception. Emily woke up in a good mood, but once she was dressed and up in her chair, she started hurting. Despite being uncomfortable, she did all of her classes without complaint. In OT she did some work sheets that required her to take her time and control a highlighting pen and then made herself some Easy Mac for lunch. Morning PT focused on stretching, and this afternoon she played balloon volleyball with me and catch with her dad while sitting on pillows on a raised mat so she couldn't touch the floor, which required her to rely completely on her core to maintain her balance.
Emily got a new roommate this afternoon. Isa is a lovely 17-year old who was in a car accident. She's at a much earlier phase in her recovery than Emily, so we moved Emily to the other side of the room so Isa would have easier access to the lift for transfers. There's bound to be adjustment issues, but I'm sure we'll all get used to each other and our routines.
Emily had a great evening - Julie from DSA and Erin and Carrie from Good Shepherd all came to visit, so Ken went to get them pizza and they had a nice little pizza party together. It meant a lot to Emily and I think the girls all had a good time. It was exactly what Emily needed after a long, hard week.
We said goodbye to Jesse L. and his parents this afternoon. They're headed back to North Dakota and we'll pray for Jesse's continued recovery. They've been at this process for 2 months longer than we have and still have a long way to go. We also had to say goodbye to Jessica, one of Emily's physical therapists. Jessica has been a wonderful person to work with and a great advocate in Emily's recovery. We'll miss her lots and wish her well.
We'll be home much of the day tomorrow - as I've said before, please feel free to visit Em here at the house.
Emily got a new roommate this afternoon. Isa is a lovely 17-year old who was in a car accident. She's at a much earlier phase in her recovery than Emily, so we moved Emily to the other side of the room so Isa would have easier access to the lift for transfers. There's bound to be adjustment issues, but I'm sure we'll all get used to each other and our routines.
Emily had a great evening - Julie from DSA and Erin and Carrie from Good Shepherd all came to visit, so Ken went to get them pizza and they had a nice little pizza party together. It meant a lot to Emily and I think the girls all had a good time. It was exactly what Emily needed after a long, hard week.
We said goodbye to Jesse L. and his parents this afternoon. They're headed back to North Dakota and we'll pray for Jesse's continued recovery. They've been at this process for 2 months longer than we have and still have a long way to go. We also had to say goodbye to Jessica, one of Emily's physical therapists. Jessica has been a wonderful person to work with and a great advocate in Emily's recovery. We'll miss her lots and wish her well.
We'll be home much of the day tomorrow - as I've said before, please feel free to visit Em here at the house.
Thursday, July 26, 2007
Surgery on Emily's right ankle went great. The biggest risks were frankly damage to the vocal chords that we just got working, contraction of other parts of the foot when the achilles was released, and problems with the surgical wound. She's talking great, so Dr. Ruben did a great job with the anesthesia and breathing tube. The orthopedic surgeon only saw contraction in the big toe, so that's the only toe flexer that he released. As far as the surgical wound, we'll just have to watch it but there's no reason to expect any problems. The minute the achilles was released the foot returned to a normal position. She'll be in a cast for 2 - 3 weeks and a brace (AFO) for 6 months. She can start weight-bearing exercises on Monday.
On a stylistic note, we're thinking her AFO is going to need decoration and a "Ski Like A Girl" sticker from Winter Park is the perfect accessory. We're hoping to get up to Winter Park in the next few weeks, but if anyone from WP is making a trip to Denver we'd appreciate a sticker.
So Emily had surgery at 7:30 a.m. We got back to her room around 11:00, and Emily had lunch and made it to all of her afternoon classes.
On a stylistic note, we're thinking her AFO is going to need decoration and a "Ski Like A Girl" sticker from Winter Park is the perfect accessory. We're hoping to get up to Winter Park in the next few weeks, but if anyone from WP is making a trip to Denver we'd appreciate a sticker.
So Emily had surgery at 7:30 a.m. We got back to her room around 11:00, and Emily had lunch and made it to all of her afternoon classes.
Wednesday, July 25, 2007
Emily's surgery is scheduled for 7:30 a.m. tomorrow. The surgery will take until about 9:00 and then she'll probably spend a couple of hours in the recovery room. We won't know until after the surgery if there will be a period when she has to be non-weight bearing. We do know that she'll be in a cast for 2-3 weeks. Hopefully once she's out of the cast and we can get her foot flat, she'll be fitted for a custom brace (AFO) and we can start trying to walk. We're cautiously optimistic given how much strength and movement she's gotten back in that right leg - she even did leg lifts with a 1-pound weight on that ankle today. This afternoon she was working on coming from a sit to a stand in the parallel bars and she was doing great. While standing she was shifting her weight between her left and right side and even let go of the left bar and stood almost completely independently. She was also doing some small standing squats to work on the strength in her hip muscles.
We've been working on putting weight on her right hand and arm - weight bearing is a great way for her weak limbs to start communicating with her brain again and vice-versa. Yesterday she was doing sitting pushups on that arm in OT.
She did a visualization test today in OT and her scores were well within normal range and her responses were generally very quick. The purpose of the test was to make sure her brain is accurately interpreting what she sees.
In speech therapy she's continuing to work on speed of processing (how quickly can she think something through), retrieving new short-term memories, and organizing her thoughts. She's started writing a story about her accident and her therapy.
Finally, for therapeutic recreation this week she went on an outing to play Bocce ball in Washington Park and today she went swimming. In the pool she was able to swim the length of the pool with very little help and worked on both her arm strokes and her kicking. She had good kicking with both legs. She was also able to swim across the pool completely on her own! Hannah went swimming with her today, which alternated between fun and irritating, which I think is the purpose of little sisters.
On a sadder note, our friend Ashley had to return to the ICU at Swedish on Monday. She developed a pretty extensive infection in the skull flap they replaced a few weeks ago and has also developed some blood clots that are a concern. Luckily, the infection has not spread to her brain and her surgeon felt like he was able to remove 95%. She's on very aggressive antibiotics to address the infection. They won't be able to replace the skull flap with a titanium plate for 3-6 months. It's uncertain if rehab at Craig will be effective during the period without a closed skull, so she may have to return to long-term care. Please keep her in your prayers.
On a happy/sad note, our friend Lindsay and her family head home to Nebraska tomorrow. Lindsay has been a good friend to Emily, and as to teenage girls they've shared a lot of the same struggles despite very different injuries. And I've grown very attached to her mom's company at breakfast and lunch and her dad's wonderful sense of humor. We wish them all the best and hope to keep in touch. Emily took her roommates discharge really hard last week and she was awfully sad at Lindsay's going away party this evening. Hopefully Grandma and Grandpa's visit this weekend will cheer her up.
We've been working on putting weight on her right hand and arm - weight bearing is a great way for her weak limbs to start communicating with her brain again and vice-versa. Yesterday she was doing sitting pushups on that arm in OT.
She did a visualization test today in OT and her scores were well within normal range and her responses were generally very quick. The purpose of the test was to make sure her brain is accurately interpreting what she sees.
In speech therapy she's continuing to work on speed of processing (how quickly can she think something through), retrieving new short-term memories, and organizing her thoughts. She's started writing a story about her accident and her therapy.
Finally, for therapeutic recreation this week she went on an outing to play Bocce ball in Washington Park and today she went swimming. In the pool she was able to swim the length of the pool with very little help and worked on both her arm strokes and her kicking. She had good kicking with both legs. She was also able to swim across the pool completely on her own! Hannah went swimming with her today, which alternated between fun and irritating, which I think is the purpose of little sisters.
On a sadder note, our friend Ashley had to return to the ICU at Swedish on Monday. She developed a pretty extensive infection in the skull flap they replaced a few weeks ago and has also developed some blood clots that are a concern. Luckily, the infection has not spread to her brain and her surgeon felt like he was able to remove 95%. She's on very aggressive antibiotics to address the infection. They won't be able to replace the skull flap with a titanium plate for 3-6 months. It's uncertain if rehab at Craig will be effective during the period without a closed skull, so she may have to return to long-term care. Please keep her in your prayers.
On a happy/sad note, our friend Lindsay and her family head home to Nebraska tomorrow. Lindsay has been a good friend to Emily, and as to teenage girls they've shared a lot of the same struggles despite very different injuries. And I've grown very attached to her mom's company at breakfast and lunch and her dad's wonderful sense of humor. We wish them all the best and hope to keep in touch. Emily took her roommates discharge really hard last week and she was awfully sad at Lindsay's going away party this evening. Hopefully Grandma and Grandpa's visit this weekend will cheer her up.
Monday, July 23, 2007
Thanks to everyone who visited this weekend and this afternoon - Mike, Pat, Brendan, and Uncle G you all helped to make Emily much less sad.
Friday and today, PT and OT really started trying to get some weight on that right arm, hand and wrist, which is possible now that she's had the nerve block injections and it's not so painful. The more we can get signals, like weight-bearing, through that right side the quicker her brain can figure out how to talk to it and vice versa. The right ankle continues to be our collective nemesis - she can't straighten her right leg because she's up on the toe, so unless you're really careful with how you position her to stand she ends up hyper-extending her left knee. She did stand in the EZ Stand for 20+ minutes today. It felt good for most of that time and then got sore towards the end. About an hour later she was complaining of pain and there was a little puffiness. If the pain/swelling goes down over night, she'll be able to start standing on a regular basis every morning - at least until Thursday.
Emily saw the orthopedic surgeon today. Surgery to deal with her right ankle is scheduled for 7:30 a.m. on Thursday. The doc and his staff really went all out to accommodate my request that we get this dealt with. The surgeon recommends a stepped approach - he'll lengthen the achilles first and then look for contraction in the toe flexors. If he sees contraction there, he'll address it. Finally, he'll look at the tendon on the inside of the ankle that's pulling it in. There's something somewhat intimidating about trusting your daughter's leg to some guy you've spoken to for all of 5-10 minutes, but he's used to dealing with Craig patients, which my ankle doc and Em's regulator orthopedic surgeon aren't, so we're trusting Dr. W's recommendation. We won't know exactly how long she'll need to be non-weight bearing on that leg until after the surgery on Thursday. Say a prayer.
Emily's short-term memory seems to be fully back. Sometimes she needs a little help, but with just a little prompting she's become adept at retrieving the memory. Her speed of processing is also improving. I think her speech therapist was a little taken aback at how quickly she screamed through identifying the pile of pictures we have of friends from DSA - including identifying each of her identical twin cousins (correctly) without hesitation even though they were completely out of context.
The best news of the day - Emily and I were heading back up to 2West after her trip to the orthopedic surgeon and out of the blue she says, "Oh cool." When I ask what, she proceeds to tell me she's started writing stories again in her head! Just like that.
Finally, please say a prayer tonight for our friend Ashley and her parents, Bryan and Kirsten. We met Ashley at Kindred; she was in a terrible car accident about 3 weeks after Emily's accident. Unlike Emily, Ashley needed to have surgery to remove a section of her skull. Today they found an infection in the incision from the skull flap replacement , so Ashley's skull flap will need to be removed. It could be several months before it can be replaced. She's a beautiful girl with a lovely family and we're praying for her recovery.
Friday and today, PT and OT really started trying to get some weight on that right arm, hand and wrist, which is possible now that she's had the nerve block injections and it's not so painful. The more we can get signals, like weight-bearing, through that right side the quicker her brain can figure out how to talk to it and vice versa. The right ankle continues to be our collective nemesis - she can't straighten her right leg because she's up on the toe, so unless you're really careful with how you position her to stand she ends up hyper-extending her left knee. She did stand in the EZ Stand for 20+ minutes today. It felt good for most of that time and then got sore towards the end. About an hour later she was complaining of pain and there was a little puffiness. If the pain/swelling goes down over night, she'll be able to start standing on a regular basis every morning - at least until Thursday.
Emily saw the orthopedic surgeon today. Surgery to deal with her right ankle is scheduled for 7:30 a.m. on Thursday. The doc and his staff really went all out to accommodate my request that we get this dealt with. The surgeon recommends a stepped approach - he'll lengthen the achilles first and then look for contraction in the toe flexors. If he sees contraction there, he'll address it. Finally, he'll look at the tendon on the inside of the ankle that's pulling it in. There's something somewhat intimidating about trusting your daughter's leg to some guy you've spoken to for all of 5-10 minutes, but he's used to dealing with Craig patients, which my ankle doc and Em's regulator orthopedic surgeon aren't, so we're trusting Dr. W's recommendation. We won't know exactly how long she'll need to be non-weight bearing on that leg until after the surgery on Thursday. Say a prayer.
Emily's short-term memory seems to be fully back. Sometimes she needs a little help, but with just a little prompting she's become adept at retrieving the memory. Her speed of processing is also improving. I think her speech therapist was a little taken aback at how quickly she screamed through identifying the pile of pictures we have of friends from DSA - including identifying each of her identical twin cousins (correctly) without hesitation even though they were completely out of context.
The best news of the day - Emily and I were heading back up to 2West after her trip to the orthopedic surgeon and out of the blue she says, "Oh cool." When I ask what, she proceeds to tell me she's started writing stories again in her head! Just like that.
Finally, please say a prayer tonight for our friend Ashley and her parents, Bryan and Kirsten. We met Ashley at Kindred; she was in a terrible car accident about 3 weeks after Emily's accident. Unlike Emily, Ashley needed to have surgery to remove a section of her skull. Today they found an infection in the incision from the skull flap replacement , so Ashley's skull flap will need to be removed. It could be several months before it can be replaced. She's a beautiful girl with a lovely family and we're praying for her recovery.
Friday, July 20, 2007
Ms. Dubrava - Emily is looking forward to your Monday visit. She's very worried about school right now, so it's a great time for you to come and add your reassurances to ours. Thanks for offering rides to those who need them - perhaps you could contact the elusive Brendan directly?
Sigrid - Once again, you've hit the nail right on the head - Emily has left the time of "forever now" and is very worried about the uncertain future. While cards and notes on the blog certainly help, they are too conceptual for her right now. Emily would love to see you and Richard. She's always loved Richard as a teacher and a friend, and besides we all know that on many levels he does still count as a teenager.
Tanya - Craig Hospital is located at 3425 South Clarkson Street, Englewood. Emily is in room 215b in Craig West. Visitors are welcome any time after 4:00 p.m. Monday - Friday (although it's unlikely Hannah will be there in the evenings), or anytime on the weekends. Since we can now go home during the day on the weekends, it's always better to call first to make sure we're there. The phone number for Craig is (303) 789-8405, if you ask for the 2West nurses station they'll be able to tell you if we're there or when we're expected back.
I've said it before and I want to be sure folks know that I mean it - you're very welcome to visit Emily when we're home on the weekend. Everyone knows how to get hold of us and we're in the phone book. Emily gets pretty sick of the hospital these days, so she likes to come home on the weekends but please, please visit.
Tomorrow Ken will probably head home with Emily around 10:00 a.m. and we'll head back to the hospital after dinner.
We continue to struggle with the ankle. Her regular PT has been out of town for the last few days, so we've spent a lot of time explaining where we are and why we're doing what we're doing. It was really painful tonight, but some time with it elevated and some pain meds eventually helped. We have our long-awaited orthopedic consult on Monday afternoon. Emily had her third, and hopefully last, round of nerve block injections on Thursday afternoon. This time they worked on her shoulder - pec, scap and lat. The injections are incredibly painful, but already today she was putting weight on that shoulder during PT.
In speech she continues to work on her voice, memory and speed of processing. On Wednesday her ST had her doing an exercise that made her use her "working memory" (that's the one Barb doesn't have any more!). Katie was amazed at how quickly she was completing the problems. Getting that working memory going is a big step.
Special thanks to Julie for walking to the hospital almost every weekend - Em loves seeing you and we're always sorry when we've missed you. We'd love to have you visit Em at home and we're happy to give you a ride. Laura, Sandy and Big Sand thanks for visiting last week - you've been great and Em loves "froggy;" I didn't know how much we'd missed you guys till all of this happened. Hendo - you've been with us through it all and means a lot to all of us and Emily really loves seeing you. She asks a lot about the accident these days and she's always so relieved when I remind her you were with her. Finally, Sam and family - we understand completely why you waited and tonight's visit really cheered her up; she hadn't smiled that much all day. She'd love to see you again - and Wii wants to play.
Sigrid - Once again, you've hit the nail right on the head - Emily has left the time of "forever now" and is very worried about the uncertain future. While cards and notes on the blog certainly help, they are too conceptual for her right now. Emily would love to see you and Richard. She's always loved Richard as a teacher and a friend, and besides we all know that on many levels he does still count as a teenager.
Tanya - Craig Hospital is located at 3425 South Clarkson Street, Englewood. Emily is in room 215b in Craig West. Visitors are welcome any time after 4:00 p.m. Monday - Friday (although it's unlikely Hannah will be there in the evenings), or anytime on the weekends. Since we can now go home during the day on the weekends, it's always better to call first to make sure we're there. The phone number for Craig is (303) 789-8405, if you ask for the 2West nurses station they'll be able to tell you if we're there or when we're expected back.
I've said it before and I want to be sure folks know that I mean it - you're very welcome to visit Emily when we're home on the weekend. Everyone knows how to get hold of us and we're in the phone book. Emily gets pretty sick of the hospital these days, so she likes to come home on the weekends but please, please visit.
Tomorrow Ken will probably head home with Emily around 10:00 a.m. and we'll head back to the hospital after dinner.
We continue to struggle with the ankle. Her regular PT has been out of town for the last few days, so we've spent a lot of time explaining where we are and why we're doing what we're doing. It was really painful tonight, but some time with it elevated and some pain meds eventually helped. We have our long-awaited orthopedic consult on Monday afternoon. Emily had her third, and hopefully last, round of nerve block injections on Thursday afternoon. This time they worked on her shoulder - pec, scap and lat. The injections are incredibly painful, but already today she was putting weight on that shoulder during PT.
In speech she continues to work on her voice, memory and speed of processing. On Wednesday her ST had her doing an exercise that made her use her "working memory" (that's the one Barb doesn't have any more!). Katie was amazed at how quickly she was completing the problems. Getting that working memory going is a big step.
Special thanks to Julie for walking to the hospital almost every weekend - Em loves seeing you and we're always sorry when we've missed you. We'd love to have you visit Em at home and we're happy to give you a ride. Laura, Sandy and Big Sand thanks for visiting last week - you've been great and Em loves "froggy;" I didn't know how much we'd missed you guys till all of this happened. Hendo - you've been with us through it all and means a lot to all of us and Emily really loves seeing you. She asks a lot about the accident these days and she's always so relieved when I remind her you were with her. Finally, Sam and family - we understand completely why you waited and tonight's visit really cheered her up; she hadn't smiled that much all day. She'd love to see you again - and Wii wants to play.
Tuesday, July 17, 2007
Sunday was exactly 3-1/2 months since Emily's accident. In 106 days Emily has never been angry or sad until today. During post-traumatic amnesia (PTA) a brain injury patient really doesn't create new memories, so they have no concept of time. Now that Emily has emerged from her PTA she's starting to grasp how long it's been, but she doesn't remember all of your love and support during that time. She can look around her room and see all of the birthday cards and we can talk about all of the wonderful things people have done for all of us since the accident, but she has no memories. That means, unfortunately, that except for those of you who have visited really recently, she doesn't remember seeing you and frankly that's what she's sad about - she misses her friends terribly and she's terrified at the prospect of not being able to go back to school right away in the fall.
I know this is a lot for the average teenager to deal with - but I also know that Emily's friends aren't average teenagers. We're really begging all of you to help her to know how much you've been thinking of her. Visitors are welcome Monday - Friday after 4:00 and we can make arrangements around lunch time if that works best. We will start posting a clear schedule for the weekends so you know where we'll be when - and please know you're always welcome at home if that's where we are. For some of you visiting one place or the other (Craig or home) is easier - let us know where and when and we'll be there. We're also more than happy to help with transportation - Ken and I would do almost anything to help put a smile on Emily's face. It's really, really not an imposition - just let us know you need a ride and we'll be there.
It's been a long road, but 30 days from today Emily comes home. That won't be the end of the road, but it will be the beginning of phase 4. With everyone's help and support all of us, especially Emily, will make it through this. Thanks.
I know this is a lot for the average teenager to deal with - but I also know that Emily's friends aren't average teenagers. We're really begging all of you to help her to know how much you've been thinking of her. Visitors are welcome Monday - Friday after 4:00 and we can make arrangements around lunch time if that works best. We will start posting a clear schedule for the weekends so you know where we'll be when - and please know you're always welcome at home if that's where we are. For some of you visiting one place or the other (Craig or home) is easier - let us know where and when and we'll be there. We're also more than happy to help with transportation - Ken and I would do almost anything to help put a smile on Emily's face. It's really, really not an imposition - just let us know you need a ride and we'll be there.
It's been a long road, but 30 days from today Emily comes home. That won't be the end of the road, but it will be the beginning of phase 4. With everyone's help and support all of us, especially Emily, will make it through this. Thanks.
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