Thursday, November 20, 2008

About 6 months ago on the eve of the one-year anniversary of Emily's accident I wrote about the pain of going to bed praying for the "big miracle" and waking up trying to find the strength to be thankful for the little miracles. Some of those little miracles are very private and I won't talk about them in this blog. But I know that this blog is going out to people that are struggling with what we've endured and I want to provide hope. So here's some "little miracles:"

Losing an arm to a brain injury isn't the same as having an amputation. Yes, you and the amputee still have one arm left, but the amputee doesn't have the missing arm fighting against them, and the arm that's left doesn't shake and miss its mark. That's Emily's reality - her right arm fights her when she's walking, pulling back and throwing her off balance, and she can't always depend on her left arm and hand to go where she wants it to go. It's a long hard process leading to little miracle #1 - about a week ago Emily was putting on a sweater for school. I helped with the first button and asked her to work on the next button while I went and got her some earrings. When I came back she'd buttoned the remaining buttons. To the outside world a small victory - to us a major miracle.

A month ago we were ecstatic that Emily had gotten a B+ in pre-calculus on her quarterly report card. Since that grade, Em's gotten the second highest grade in the class on one test and a 100% on another. Our heartfelt thanks go out to everyone who had faith in her that she could do this.

Thursday, October 23, 2008

We just finished up the first quarter of the school year and while it's been a grind, the results are well worth it. Emily finished the quarter with a B in CU Literature & Composition, B+ in Precalculus, and A's in everything else (Creative Writing, Resource Study Skills, and Student Assistant). All of her teachers have been incredibly supportive. Precalculus has been the toughest class, which has been hard on Emily emotionally because math has always been so easy and one of her favorite subjects. It's been tough for her to accept that it's harder now and she needs more help, but her work ethic is an inspiration for all of us. Under her Individual Education Plan (IEP) she's entitled to modified, shortened assignments and tests. She'll have none of that - so, for example, over the last 2 days she's done 35 trigonometry problems just like everyone else in the class!

Emily's biggest struggle has been retrieving the information she's learned. She's obviously learning the material, but she needs a little one-on-one cueing to retrieve it. This has been a big challenge with tests, but now that she's being allowed to complete her tests at home where she's less stressed, she's doing much better. Her last test she had the second highest score in the entire class. Ken's been reading Trigonometry and Calculus for Dummies so that he can help her.

To keep up with everything, Ken helps her with math, and I help with her lit and creative writing. Generally I help her organize her thoughts before she starts writing a paper or story and do clean up editing. None of her classes are light loads - she's already read/done papers/taken exams on Equus, The Collector, and King Lear in lit. Her next big project for lit is a thesis paper on King Lear. Her lit class is actually a CU class taught at DSA - not too shabby for a young woman who couldn't communicate 16 months ago. For creative writing she's written 8 short stories with strong female characters and read another 12 short stories in addition to regular poetry, story and other assignments in class.

Em continues to recover physically as well. We're now a wheelchair free house. Em uses her wheelchair at school and still uses the stair lift at home, but walks the rest of the time. We're getting braver about walking other places too - we just need to be realistic about distances so she doesn't get too tired. She did 1/2 mile on the treadmill a couple of weeks ago. She's almost up to 1 mph on the treadmill (her 1/2 mile was 40 minutes at 0.8 mph). The treadmill is excellent for gait work because it forces her to keep taking steps - she can't pause on her good leg. Speaking of good leg, her right leg is strong enough now it's actually easier for her to go up and down stairs leading with her right leg. She's also mastered up/down stair-over-stair if she's got a hand rail.

Her right pupil is starting to react to light, which is another big development. She's still working on using both eyes to focus and read. She has single vision in every direction except up/right and down/left.

We're still working hard on her right arm. She gets up at 6:00 a.m. every day to do 30-45 minutes of exercises with her neurodynamic arm/hand brace. She's now able to pull her right arm up and straighten it back out on her own. We're seeing some ability to grasp with the right hand immediately after working with the brace.

I'm currently reading "My Stroke of Insight" by Jill Bolte Taylor. Jill suffered a catastrophic stroke at 37. We met several folks at Craig that had suffered strokes because of the same congenital artery deformity that caused her stroke. It took her 8 years to make a full recovery. One of her mantras in the book is, "I will recover even if it takes 20 years." Emily hates thinking in those kinds of timeframes, but we're determined. Whatever it takes. Jill also urges you to try to keep your focus on what you've accomplished, not what you've lost. That's a tough one sometimes, but it's really the only way to keep going.

Sunday, August 31, 2008

I know everyone's been wondering how being back in school is going. Overall I think it's been great. It's been 2 weeks and we can already see some improvements in Emily. The first thing we noticed is she's talking faster and more clearly, which means she's thinking more quickly. She's also much more independent - moving around the house more on her own. She very seldom uses her wheelchair at home any more and is walking with both her single-point cane and her hemi sidestepper without any assistance. She's even started taking a few steps without any cane.

There have been a few glitches as we've gotten back into school, but we seem to have worked through most of them. The school nurse at DSA has been a huge help. Emily does her home exercise program with her every day during her free period, which allows Emily to focus on homework, walking and her SaeboFlex at home. Emily's homework for pre-calc has been a bit of a bear - not because it's too hard but because she can't write it out, so she ends up typing the problems and her solution which just takes a lot of time. She doesn't want Ken or I to write or type for her partly because she wants to do it herself and partly because getting it down on paper helps her understand and remember. We're going to try some software alternatives this weekend that we hope will make it go more quickly. It also doesn't help that neither Ken or I remember anything from high school or college calculus, so we're basically clueless when she has a question.

For Creative Writing Emily's writing 8 short stories with strong female characters - she's working on her fifth already. Writing has been such a godsend. I think it really allows her to leave behind all the hard work and limitations she faces in this reality and go live in a different reality for a while. Her big project for the year will be to compile a book of "finger exercises." It's my understanding that a "finger exercise" is when you're asked to write for 5 or 10 minutes based on an opening prompt. Emily will be writing up an introduction along with her prompt and sending it to people she chooses to write from there. I think she really wants to focus on the people that have been there for her during her recovery - so many of you that read this blog should expect to see something in the not too distant future.

Emily's last class is a CU Literature and Composition class. So far she's really enjoying it, and I got a lovely e-mail from the University of Colorado at Denver instructor that's teaching it letting me know how much she's enjoying getting to know Emily. We kept Emily's schedule light for the Fall semester so that she wasn't overwhelmed. We're hoping that by the time the second semester rolls around in January that she might be able to add a fourth class. It was important for Emily to feel that she was successful in her return to school and not to get too fatigued by the end of the day. She's pretty tired when she gets home every afternoon, but so far she's been able to handle it well. We know it will only get easier to manage as time goes on.

Her new arm splint finally arrived the day before school started. It's a neurodynamic device that retrains her right had to grip and release. Eventually we'll add an upper arm piece that will add in her reach. Emily hates it but despite that has been a trooper. If you're interested in seeing what it looks like go to www.saebo.com. There's pictures and even some video of how the system works.

Last Spring, just before the anniversary of Emily's accident, one of her former ski team mates who is now a videography student at the Colorado Institute of Art made a 5-minute documentary on Emily's recovery. I actually couldn't watch it until July - things were just a little too raw for me around the time of the one-year mark. I finally watched it a few weeks ago, and it is truly wonderful film - Dutch did just an incredible job. If you go to YouTube and search for Emily Boldt you'll be able to watch it. It's amazing to me to see just how far Emily has come since the film was made.

Finally, we put together an on-line photo album from our trip to Alaska. I've sent it to several people that I have e-mail addresses for. If anyone else would like to see it drop me a note either in a post or an e-mail to home or work and I'll send you the link.

Saturday, July 26, 2008

I've decided I miss blogging and I've heard from enough people that they miss the blog, so I'm going to start posting again. Nothing like the daily/weekly schedule I maintained during the first year after the accident, but fairly regularly.

Emily's doctors - both her rehab doc at Craig and her neurologist - are thrilled with how far she's come. For me it's a constant battle between how far we've come and how much we've lost. I know Emily feels the same way although she tries her best to hide it most of the time. Where's she at? She's now walking regular, moderate distances with just a cane and standby assistance. I've started taking my hand away for a few steps at a time and she does just fine. The problem with walking is that sometimes she just can't get her right leg to listen to her and that can result in her leaning too far back or to the left and losing her balance. We'll get there - the more we work on it the better the signal gets. Her right eye has healed to the point that she no longer has double vision except with peripheral vision upward - so no prism lenses or tape on her glasses. The pupil is slowly getting smaller and more reactive to light. Her voice has improved dramatically - her pitch is back to normal and she has good modulation, except when she gets really excited about something. Her tremor with her left hand is gone; now she just continues to struggle with having only one working hand.

The right arm/hand are still a huge challenge. We've been able to maintain all of her range of motion and avoid problems with her shoulder and elbow, but she still doesn't have any real functional use. She's regained her shoulder movement - so she can bring the arm forward and back with her shoulder, and she can do her own stretching and sometimes even hold her right arm straight up above her head while on her back. We've started using a small, hand massager to stimulate her bicep/tricep and with that stimulation she can do bicep curls even when she's sitting upright. We're waiting for a new splint that will use the muscle tone to get functional movement with the arm and hand, which then in turn is supposed to trigger the signal to/from the brain. Hopefully it will be here soon.

Our trip to Alaska went really well. We were able to go all of the places we had planned - day cruise in Seward, bus tours in Denali, some accessible trails. Emily was an incredible trooper - walking on uneven surfaces and rocky areas, up and down stairs even on the bus, and some really long days. It wasn't the trip we envisioned when we started planning 3 years ago, but we were still able to do it. Some of the highlights were watching the glaciers calve, having a black bear walk across the trail right in front of us in Kenai Fjords, a grizzley right next to the bus in Denali, and actually getting to see Mt. McKinley. I'll try to figure out how to post some pictures.

We only have 3 more weeks at Craig before we head back to school. The current plan is to transition to therapy through DPS for the school year and then go back to Craig for additional therapy next summer. Even though it's been 16 months since the accident, the doctors still think there will be continued progress. We haven't had a real set back in her recovery yet, although there have certainly been some bumps, and we really haven't had any plateaus. We all just need to keep working - it just feels like a grind sometimes. I'm a little worried about how hectic things are going to get when school starts, but we'll figure it out. We always do.

Monday, March 31, 2008

A year ago at this very moment, Emily was asleep exhausted from a great day of skiing the trees and chutes on the back side of Parsenn's Bowl. The competition season was pretty much over and she and her teammates were just having fun. They were young, incredibly strong and they wanted to enjoy their last couple of days on the mountain. No one could possible know that just before 11:00 o'clock on Sunday, April 1, Emily's life would change forever.

We've had a year of incredible challenges and victories. Emily's gone from bedridden and completely unable to communicate, to being the darling of Craig Hospital where every therapist and most patients can't wait to see her smile and say hi. She's charming and articulate, although her voice is a little higher and much less strong that it was. Voice therapy is helping. Of course just to keep life interesting the medical spending account administrator is challenging whether the voice therapy is "medically necessary."

It's been a year of going to bed praying for the big miracle that will make everything the way it was, and getting the little miracle that proves she's getting better every day. The schedule is grueling for all of us. Emily works so hard and never, ever complains. School work takes longer and we've learned we can't wait too long between the reading, discussion, and assignment/test. Her Craig team is worried that it will be harder for her when she's back in the classroom with other students, but her homebound teacher thinks it will be easier because it won't be so focused and intense. We'll just have to wait and see. If anyone can make it work it's Emily.

Emily is walking 400-500 feet 1 person, standby assist with the Hemi Sidestepper. She uses it to get around the main floor of the house almost all the time. At Craig she's 1 person, mod assist with the forearm crutch, and she can usually manage 200-250 feet. She also managed 9 minutes at 0.7 mph on the treadmill at Craig on Friday, which is the furthest she's ever gone. The goals is still for her to walk without an assistive device; when we'll reach that goal is anyone's guess. Her physical therapy is incredibly hard for her; it's not unusual for her to be worn out and sweaty when she's done. And yet, everyday she rallies for her other therapies without complaint and doesn't let her physical tiredness affect her ability to participate in speech or OT.

We're getting some good movement with her right arm, especially when it's stretched out. The botox injections in the hand have stopped the work on grasping and holding things with the right hand for a couple of months, but it's allowing us to get some nice relaxed stretches with the hand and it stays relaxed much of the time.

Her right pupil is still larger and less reactive than the left, but she's got good convergence, and single vision laterally and down is coming along. Up will be the last to correct, but we're still optimistic.

It's still very hard for her to be independent in a lot of things, although she's trying very hard. I can't imagine the frustration of being a 16-year old girl and knowing you can't just jump out of bed when you want to and run to the bathroom. But we see slow, steady progress and we have to remember that if she'd hurt her neck and not her brain all these difficulties would be permanent.

She's still very much Emily with her wonderful sense of humor, huge beautiful smile, great attitude and amazing work ethic. Everyday we see the "old Em" more and more. We were at the zoo on Easter. She and I were standing at the lion enclosure waiting for Ken and Hannah to come back from the carousel, and it seemed so absolutely normal to be standing there with her; it was bittersweet.

Ken and I are both still trying to work full-time, while splitting our time with Em. It makes for a lot of racing around the city and frazzled nerves, but it's working. It also makes for some odd hours - working on your powerpoint presentation at 8:00 on Sunday night so you can be at Craig on Monday morning. Everyone's being flexible and it's working. There's just not much time for fluff (or errands).

As folks have probably already figured out, we won't be doing regular blog updates anymore. I promise to do updates for big achievements, but I don't want the blog to become a "chore," it's been too therapeutic to let that happen. Thanks for all your posts, thoughts, prayers and good wishes. It's been an incredibly difficult year and all the support has helped more than anyone can know.

Saturday, March 8, 2008

Emily had another great week. After triumphant 400-500 feet of walking on Monday, she walked about 250 feet with the forearm crutch Wednesday and Friday. She's doing better and better with it, although it's still a lot more work than the hemi-cane. She's able to take more and more steps without holding on in the parallel bars and her balance on stairs has gotten amazing. I think it's actually easier for her to go up and down stairs than to just walk. We're using the wheelchair less and less when we're on the main floor at home.

Emily started her voice therapy this week. She'll be working with a second speech therapist that specializes in voice therapy for a half hour each week, and she'll have exercises we need to do at home. The goal is to stimulate the area of her brain that controls the pitch and sound of her voice rather than just treating the symptoms by doing more vocal chord injections.

Emily got her first home school report card. She's passing everything and getting A's and B's in the classes where she's done enough work to get an actual grade. She finished her American Lit research paper on modern monarchies, and heard back from Ms. V that she got 100% on her chemistry project. So school's going really well.

Em was able to go back to Philosophy Club on Thursday. It's CSAP week, so nobody was really in the mood to do Philosophy, but Em enjoyed visiting with everyone and actually worked on her computer in the Creative Writing Room for a little while. We got all the paperwork filled out, so Em will be a regular from now on.

This coming Thursday Em will have her final round of nerve block injections in her right hand. The hand seemed to be loosening up really well, but as we got the arm looser the hand got tighter. She's working with a new robotic device called a "hand mentor" to help get her hand working again. The OT's are going to train Ken and I to use it with her when we have a little extra time around Craig.

One of Emily's former ski teammates is making a documentary about her recovery. He's filming at the house this weekend and will be filming at Craig on Friday. His goal is to make an inspirational documentary that can help other people get through traumatic brain injury. We were proud of Emily for agreeing to do it and looking forward to seeing the final product.

Monday, March 3, 2008

We haven't gotten an "official" letter yet, but everything is in place for Emily to return to DSA in August. She's very, very excited and happy. She'll be in regular classes with some accommodations such as extra time for tests/assignments. She'll also be returning to Philosophy Club this Thursday, which she's also very happy and excited about. It's been a long, hard journey to get all of the school issues settled, and I'll never understand why it had to be so hard, but now they're settled and it's a huge relief. Her homebound classes are going well. We had the week off from her teacher last week and Em managed to get her first draft of her American Lit research paper completed and get through a chapter of American History (the Kennedy/Johnson years) and a chapter of chemistry (atomic structure and the periodic table relationships). Emily read and completed the section review questions for Chemistry in only about an hour yesterday.

Emily saw a new ear, nose & throat doctor a couple of weeks ago for her voice. Her voice continues to get stronger and more "normal" sounding all of the time. This doctor is supposedly the leading voice doctor in the country; just moved to Denver. He actually has a recording studio in his offices. He wants Em to start voice therapy with a specialized speech therapist that we'll see for the first time tomorrow. We'll do the voice therapy for a while and reevaluate whether or not another injection of collagen in just her left vocal chord is needed. Ultimately he may recommend surgery to shorten the left vocal chord a little bit, and he would be able to clean up her trach scar during the same surgery.

Emily is walking almost all the time when she's on the main floor of the house these days. She still needs one of us for standby assist, but her balance is getting much better. Every now and then she'll have moments when she just can't get her right leg to move, but that's happening less often. Em had another round of nerve block injections in her right shoulder last Thursday. The shoulder injections are always the worst. We saw a big improvement in her walking right away because now she's not pulling that right shoulder back when she takes a step with her right leg. The idea, as I understand it, is to block the nerves to the big muscles so that the smaller muscles can engage and give her more purposeful movement. The more movement/use she has of the arm, the better the signal from the arm to the brain, and vice versa, works, so that by the time the nerve block wears off she's got better control/use. Em has another appointment with the eye doctor on Wednesday. She's got consistent single vision now, but the right pupil is still larger than the left. We were at the Avalanche hockey game Saturday night and she had no problem following the puck in action - and there was only 1 puck! Emily really enjoys going to see the Avalanche, and we really appreciate the gentlemen who donates his tickets to the Craig Foundation.

All in all we had a busy, fun weekend. It was kind of nice to just hunker down at home during the bad weather yesterday.

Saturday, February 23, 2008

Emily walks 200-300 feet every day she's at Craig now. Usually about 100 feet working on balance and taking steps without holding on in the parallel bars and a 200 foot lap around 2-West with her hemi-walker. She doesn't need any cueing or help with balance any more. Celeste still considers it minimum assist because she's not confident in Emily's balance yet. On Friday Emily walked about 25 feet with a forearm crutch instead of the hemi-walker. The hemi-walker is fine at Craig with it's wide halls and doorways, but it's pretty difficult to use at home with normal width halls and doors.

Amputees and low-spinal chord injury paras use forearm crutches a lot. It's a single long pole with a forearm cuff and an ergonomic grip for her hand. Her first few minutes walking with it on Friday were kind of shaky, but once she got the feel for proper placement and developed some confidence using it she did much better. I actually thought she was walking as well if not a little better than with the hemi-walker.

Emily's right arm and hand are really showing some improvement. Yesterday she was bending and straightening her right arm while laying on her back. She was also able to press up a 2-pound weighted bar using both arms, keeping the bar level and lowering it with control. When she was sitting up she could do the same movement with the weighted bar straight out in front. She's also fairly consistently able to relax her hand and straighten her fingers and bring them back into a fist. We're out of the big, ugly hinged arm brace and hopefully through with casts. Em was fitted for a new wrist/hand brace on Wednesday that's working well so far. Her skin is so sensitive we have to build up our time in braces really slowly. Next week she'll likely start working with a new device called a Saebo Flex. It's an engineered splint that allows her to actually use the tone in her right hand to purposefully use the hand to pick things up, hold them, and let them go.

School work is going really well. Emily isn't having any trouble at all completing her homework, and in fact she's been doing statistics and chemistry homework in as little as 15-20 minutes. Ryan, if you read this post you could let Professor Jerry Reitman at Duke know that Emily's using his Statistics 101 problems from a few years ago as her probability curriculum. And to Sarah J. and the rest of the chemistry table - Emily's homeschool teacher is making her take tests on chapters Ms. V didn't even make all of you take!

Monday is our first big planning meeting for school in the Fall. Emily turned in her reaudition portfolio 3 days early, and her official letter should be in the mail. Craig is recommending all regular classes with some accommodations. It's a moving target and will have to be reevaluated in August, but it's so good to be moving productively in the direction of school. Emily will be back at DSA in less than 6 months. Sooner if we can ever get clearance to come to Philosophy Club.

We're all tired but so incredibly proud of Emily and all her hard work.

Saturday, February 9, 2008

It's been a busy couple of weeks since I last did a post.

All of Emily's hard work in the parallel bars has paid off - last Monday she tried her hemi-cane again and did much, much better. She's back to walking about 200 feet at a time with the cane without any of the help she needed just a few weeks ago. Her tremor in her left hand is pretty much completely gone, so she can place the cane without any help. She's also gotten the feel of where the cane should be (too far forward and her elbow is too straight, if she maintains a slight bend in the elbow she's placed the cane correctly), so she's able to keep her head up, shoulders back and maintain her balance. It's an amazing improvement. She also doesn't need any help any longer remembering to place the cane first, then step right, and finally step left. We're still hoping that with time and practice she can move on to a cane that's less cumbersome than the hemi (or even no cane at all), but we'll take it for now.

Cognitively Em continues to show good, steady improvement. Every time she does an exercise, she does it faster than the last time - sometimes by several minutes. Her school work is coming along very well. She's having less trouble retrieving information she knew before the accident. She still sometimes loses track of day-to-day details, but then again who doesn't. She's starting to work on learning new material for school and so far so good - when taken in small pieces she's demonstrating that she can learn new information - if the ability is there all we have to do now is wait for it to improve with practice.

Em's right eye has convergence right, left and down now - so no double vision looking in any direction except up. We're seeing some contraction of the right pupil, but it's still larger than the left. Here again, we've seen lots of healing and there's no reason to believe we won't see more. Everyone told us that up would be the last direction she'd get - just gotta keep up the exercises.

Emily had another nerve block injection in her bicep to help relax her elbow a week ago. We got the arm out completely straight and were able to see some contraction in her deltoid, which is a good sign. She's been in a cast since last Monday to give it a good prolonged stretch. Casts are a pain, but we're managing. The new plan is to take the long arm cast off this coming Monday, spend a week or two casting just her wrist and hand, and then hopefully move onto a dynamic brace that will help her start getting some movement/use from here right hand. We've seen some finger movement, so we're hopeful. We're also going to do another round of nerve block injections in her right shoulder in a couple weeks. It's so tight it pulls back and causes her torso to twist which makes walking more difficult - although after several weeks of cueing she's doing a much better job, on her own, of keeping her shoulders straight when she's walking.

Still no progress getting her back into Philosophy and Writing Club. I guess I shouldn't say no progress - we did get a ruling from the DPS administration that attending after-school clubs wouldn't jeopardize her homebound status for classes. DSA says they're working on developing the necessary health plan to so that Emily can safely be in the building for clubs, but nothing's complete. Emily and I have an appointment with her DPS neuropsychologist on Tuesday.

My four days away seem to have gone off without any problems. Many thanks to Grandma Nancy for helping us out - she and Emily did great and Nancy learned a lot from her days at Craig. Many thanks also to all of the wonderful members and staff at the NACWA Winter Conference - all of your kind words, thoughts and prayers mean so much.

Wednesday, January 23, 2008

We're starting to believe that when everything is said and done Emily will have walked the equivalent of the New York marathon (as opposed to any other marathon of course) in the parallel bars. That's not intended as a complaint or a criticism, but it is an example of just how hard she's willing to work and how great her attitude is. Three days a week she spends the better part of an hour working on walking in the parallel bars. Sometimes it's walking; other times it's balance and weight shifting. All of it's important and we continue to see improvement every single day, but her positive attitude throughout is an inspiration.

Other therapies continue to pay dividends. She's getting more and more small movements in her right arm. Today she was able to hold it at her side relaxed and bring it forward. Starting next week she has another round of nerve block injections to endure. We know that controlling the muscle tone is the key to getting more use of the arm, but none of us are looking forward to the injections.

We just completed another round of cognitive testing. Emily showed a minimum of 3 grade equivalent improvement in every area since the testing 3 months ago, with a 6-grade equivalent improvement in at least one. We're hoping the comparison of this round of testing with the September testing demonstrates to the powers-that-be at DPS/DSA that there's no reason to believe that our goal of returning to school (at DSA!) next Fall is unreasonable. We have yet another meeting with yet another new face at DPS next Monday. What a wonderful system. On the bright(er) side, Emily's doing well working with her home school teacher to finish up her assignments from last Spring. It's interesting that it took us over 5 months to get her re-enrolled at DSA, but once she was re-enrolled it took DSA less than a week to bill us for the math textbook she didn't turn in last Spring. What do those DPS banners around Denver say? "Putting kids first;" I'm not sure I agree. Not once has anyone with DPA/DSA (other than her teachers) said, "what's best for Emily?"

We have to apologize to all of the wonderful folks that contributed to the "Keep Emily Skiing" fundraiser - we've just been so busy (and tired) that we haven't gotten notes to all of you. We will. We truly appreciate your support. For the time being, Emily just isn't ready to think about skiing with the NSCD. She's starting to really understand some of her physical limitations and the thought of skiing is just too much right now. We'll get there, but we wanted folks to understand.

Tuesday, January 8, 2008

Emily embarked on a new challenge yesterday. Celeste, her physical therapist, has decided that walking with a cane or hemi-walker is too difficult for Emily. Her left hand still has tremors and she gets so fixated on where she's placing the cane that she doesn't maintain her balance or take the good steps she's capable of. So Celeste's new therapy goal is to get Emily walking without a cane. She started yesterday with Emily walking on a treadmill for 9 minutes at .6 mph without a harness. Ken and Celeste were there to help with balance, but Emily did all the work herself. When she started using the treadmill a few weeks ago she was walking with a harness that supported about half her weight, at .1 mph, for 2-3 minutes, with Celeste helping with every right step. After she walked on the treadmill yesterday, she worked on balance in the parallel bars - standing on just her right foot and letting go - and then did some walking with her cane. She did two more hours of therapy - speech and OT - took a break for lunch and a rest, did an hour-long mat class, and came home and worked on her computer.

She's currently writing a sequel to the fantasy novella she wrote last year. This is something she came up with all on her own. She 10+ pages into it. She knows that the best way to get back to DSA is to prove to them that she's still a writer. I hope that's enough.

Emily's getting some really good forward/back and up/down movement in her right shoulder. The arm is still incredibly tight and often very painful, but purposeful movement is a good sign. She was even able to straighten her fingers out while we were stretching it in therapy last week. She's scheduled to have another round of nerve-block injections in her right arm/shoulder next week, which won't be fun but should help with the tightness and pain. Her fine motor skills with her left hand are also improving - she's much steadier eating and can pick up small objects more easily.

Her right eye continues to heal. She nows uses both right and left eyes for everything she does at the mid-line. She's even reading with both eyes. She very seldom gets so tired that she asks for her other glasses with a full right-eye patch. We're starting to see some progress on the looking up and that's encouraging for both up and down convergence in the future.