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.
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