Emily's Blog

2008-11-20T19:01:00.000-08:00

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.

2008-10-23T16:11:00.000-07:00

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.

2008-08-31T09:11:00.001-07:00

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.

2008-07-26T04:05:00.000-07:00

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.

2008-03-31T05:18:00.000-07:00

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.

2008-03-08T14:05:00.000-08:00

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.

2008-03-03T04:40:00.000-08:00

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.

2008-02-23T06:31:00.000-08:00

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.

2008-02-09T06:30:00.000-08:00

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.

2008-01-23T19:34:00.000-08:00

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.

2008-01-08T04:30:00.000-08:00

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.

2007-12-31T20:01:00.000-08:00

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!

2007-12-27T08:14:00.000-08:00

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.

2007-12-16T06:20:00.000-08:00

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.

2007-12-11T04:50:00.000-08:00

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.

2007-11-30T14:24:00.000-08:00

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.

2007-11-26T18:46:00.000-08:00

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.

2007-11-22T18:15:00.000-08:00

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.

2007-11-14T04:45:00.000-08:00

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.

2007-11-11T05:19:00.000-08:00

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.

2007-11-02T16:13:00.001-07:00

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.

2007-10-29T05:18:00.000-07:00

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.

2007-10-24T19:13:00.000-07:00

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.

2007-10-18T19:21:00.001-07:00

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.

2007-10-15T19:13:00.000-07:00

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.

2007-10-08T18:05:00.000-07:00

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!

2007-10-04T06:31:00.000-07:00

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.

2007-09-26T20:26:00.000-07:00

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!

2007-09-18T19:18:00.000-07:00

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.

2007-09-13T17:08:00.000-07:00

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.

2007-09-09T17:45:00.000-07:00

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.

2007-09-05T19:12:00.000-07:00

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.

2007-09-02T18:58:00.000-07:00

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.

2007-08-30T06:00:00.000-07:00

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,

2007-08-26T20:35:00.000-07:00

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.

2007-08-24T23:38:00.000-07:00

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.

2007-08-22T19:10:00.000-07:00

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!

2007-08-20T21:13:00.000-07:00

OPEN HOUSE
Saturday August 25 from 2:00 -7:00
1841 South Spruce Street, Denver, CO
This is your chance to welcome Emily home, and our chance to thank all of you for your support. Please join us for food and libations!

Fliers By Hannah B.

2007-08-20T20:20:00.000-07:00

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.

2007-08-20T05:06:00.000-07:00

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.

2007-08-18T04:25:00.000-07:00

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.

2007-08-16T23:49:00.000-07:00

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.

2007-08-15T21:13:00.000-07:00

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.

2007-08-14T23:14:00.000-07:00

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.

2007-08-11T08:23:00.000-07:00

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.

2007-08-09T20:10:00.000-07:00

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.

2007-08-07T12:34:00.000-07:00

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.

2007-08-06T07:53:00.000-07:00

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.

2007-08-04T10:43:00.000-07:00

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.

2007-08-02T18:54:00.001-07:00

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.

2007-07-31T20:28:00.000-07:00

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.

2007-07-30T19:36:00.000-07:00

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.

2007-07-27T21:04:00.000-07:00

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.

2007-07-26T21:37:00.000-07:00

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.

2007-07-25T19:30:00.000-07:00

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.

2007-07-23T19:07:00.000-07:00

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.

2007-07-20T22:49:00.001-07:00

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.

2007-07-17T20:16:00.000-07:00

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.

2007-07-16T18:31:00.000-07:00

I hate to disappoint Brendan, but Emily really enjoyed the new Harry Potter movie, but then again she's not in the mood to diss much of anything these days and she'd seen "Ghost Riders" the night before, so her expectations may have been exceptionally low. In any event, we made it to the movie and we all had a great time. Ken and I set a personal best for a car transfer - 6 minutes!

We got a little positive news on the ankle situation today. We took off the tape and while there's still swelling, there's no blood pooling which there would be with any kind of tear. She did have an x-ray this afternoon and will probablyl have a consult with an orthopedic surgeon later this week, but hopefully we're still just looking at an achilles issue and not that plus torn ligaments. Today's PT's theory is the nerve block took longer than expected to work and it loosened things up while she was in her "ballet" cast. When the cast came off on Thursday, Friday's work stretched everything more than it had been stretched in months, which lead to the pain and swelling. Let's hope today's theory is correct. It doesn't mean she won't need surgery, but it does mean we can continue with really productive PT. We're trying out another new brace and if it continues to look good in a day or two we'll go back to the standing exercises.

Overall we had a good day today. She did some great work in OT, PT and ST. We raced back from X-ray to make mat class. She was in her typical, great mood all day. And tomorrow's another day - exactly 30 days from tomorrow Em will come home!

We're trying to check e-mail in the afternoon around 4-4:30. If you can't visit but are available around that time, I know Em would love to chat.

2007-07-14T21:58:00.000-07:00

Today went well. We missed Harry Potter, but Uncle G. successfully charmed the manager of the theater into exchanging our tickets for tomorrow. The ankle still hurts - at one point it hurt when I layed her blanket over her feet - but the swelling seems to have imroved a little (it's hard to tell with all of the tape).

Instead of going to the movie, we went for a walk and out to lunch at the cute little ice cream shop at Clarkson and Hampden. After lunch, everyone else went home to do chores or study, and Emily and I went to her room to rest and elevate/ice her ankle. She had a wonderful visit from her friend Julie - they talked for a while and then watched a movie together. Emily was really happy to see Julie. It's hard for her friends to understand, but for the most part Emily doesn't remember that you've visited since the accident she only clearlyl remembers the last few weeks.

This evening we had a wonderful family picnic on the Craig patio and then went to watch "Ghost Rider" in the entertainment room. Another very entertaining movie with certainly no lasting artistic value.

The plan for tomorrow is to go to the movie and maybe out to lunch. We should be back at Craig and rested by 2:00 - so please, please feel free to visit. Today was the first day I've really seen her down and Julie's visit cured that in a heartbeat.

2007-07-14T03:43:00.000-07:00

Well the ankle we've been worried about for so long seems to have finally gone yesterday. One of Emily's PT's has started referring to her right ankle as her "arch nemesis." We aren't sure exactly how or when but sometime yesterday morning those weak tendons probably became torn tendons. By later yestday afternoon any weight - as in sitting in her wheelchair with that foot on the foot plate - was painful and her foot/ankle had started to swell. The therapists were afraid to re-cast it because if it kept swelling we'd have to cut the cast off and if we were successful in gettinig the swelling to go down she would start rolling the ankle inside the cast. So everyone stayed late and got it taped and wrapped as best they could. Unfortunately, by 7:00 it was obvious the wrap was too tight and after talking to her nurse I took the ace bandage off.

All this means that Emily will have to be completely non-weight bearing on that right foot at least over the weekend. Not being able to bear any weight means that transfers and dressing are more difficult and coming home is just too big a risk. So other than going to see Harry Potter tomorrow morning, which she's been looking forward to for weeks, we'll be hanging at Craig this weekend. Yesterday afternoon when she was in pain and could easily see how worried the rest of us were was the first time Emily's spirits have really sagged. She had company in the evening, which helped a lot, and hopefully a good night's sleep will help. I'm sure visits from her friends this weekend would help even more.

2007-07-12T17:24:00.001-07:00

Sigrid is absolutely correct - all of Emily's therapy these days force her to integrate the various skills she's been working on individually. For example, she spent the hour between 11-Noon today in a tall kneel, maintaining her balance on her own, while she did spinal twists, reached up and to the side, and played tick-tac-toe. Keeping her balance while she moves her arm or shoulders requires a lot of concentration and core muscle strength. She then finished up with 5 reps of going to a squat from a tall kneel and back up - slowly.

In speech they're trying to help her speed up her mental processes by naming things she's familiar with in lists as quickly as possible - sports, states, cities. One of the tricks her ST wants her to use is to break the problem down into sub-categories. So instead of thinking in terms of the universe of sports which can be overwhelming, to think about it in terms of sports with balls, winter sports, etc.

Emily got her last cast off today. The leg cast seems to have helped the ankle's lateral stability, but we really saw no benefit in the extension of the achilles. I discussed it with both her regular neurologist and the neurologist that has been doing her nerve block treatments and we've agreed the next step will be surgery. She'll have a consultation with an orthopedic surgeon in the near future. In the meantime we're going to try to protect the ankle with braces and avoid any more casts.

She had Botox injections in her forearm, wrist and hand today to relax those muscles. It was pretty painful (imagine a needle the size of an acupuncture needle inserted into the soft underside of your forearm or the palm of your hand). The point is to get those muscles to relax so that her hand and wrist are in a more normal position and some of the smaller muscles can actually work to move her hand and arm.

Uncle Gary's back for another short visit. Last night he and Emily were visiting and he said, "You can't believe how good it is to hear you talk." She responded, "You can't believe how good it is to be able to talk." Says a lot doesn't it? Gary was reminding all of us that when he and his sons were here around Memorial Day weekend Emily wasn't talking at all. When he was back for her birthday, she was just starting to talk. Now she's more and more comfortable talking and her voice is getting much stronger.

Only 5 more weeks at Craig. We've got a lot to accomplish in those 5 weeks.

2007-07-11T19:08:00.000-07:00

Emily learned how to maneuver her wheelchair up and down hills today. Since she does it all with one leg, it's a lot more challenging than it sounds. She did great with the uphill - you just turn the chair around and work. Those ski legs come back every now and then. She struggled a little more with downhill. On the downhill you have to control you speed and if you use your foot it tends to get caught under the chair. You have to use your hand on the hand rail to act as a brake. Emily got the handrail brake concept mostly, but she kept forgetting to tuck her fingers around the rail and getting them caught in the spokes of her wheel. We'll just have to keep working on it.

Emily got the cast off of her right late yesterday and the stretch looks good enough that we're going to go back to using splints to maintain the extension of the arm - much easier for showers and swimming. Still no resolution on what to do on the right ankle. They'll take that cast off in the morning and we'll see if a week in a cast has given us any additional range. I talked to her doctor and her PT today - the PT and I agree that the ankle is a real road block right now. I think it's up to the PT to convince the doc.

Finally, Emily did some standing in the parallel bars again today - but today for a minute or two she was able to stand completely on her own with no support from her PT. This is a big accomplishment.

2007-07-11T05:51:00.000-07:00

A new patient on 2West (middle-aged man who fell off a ladder) stopped Emily at breakfast yesterday and thanked her for her great outlook and attitude. The two of them shared a mat table during mat class on Monday. It was his first mat class, which can be a little overwhelming, and I think he appreciated the girl next to him that just kept trying to do every exercise despite two casts and extremely limited mobiility on her right side.

Emily got rid of the cast on her right arm yesterday. The week in a straight arm stretch was sufficient to get the arm out and relaxed. She even had some purposeful movement in the arm. She is scheduled for injections in the right wrist and hand on Thursday, so they may cast her wrist and hand next week.

I'll talk to Dr. Weintraub about the right ankle today. Even if we decide today that surgery is necessary, it will take a week+ to get it scheduled, so they will probably try another round of injections in the right calf on Thursday followed by another cast.

In PT Emily is starting to work on independence - she'll start with transfers from her chair to the mat for class and back again and progress to independent bed to chair transfers. Chair to bed is more difficult because it's uphill. I did have a heart-to-heart with her last night about never getting out of bed without calling the nurses first - that'll earn her one of the lovely zip-up "tent" beds. Her PT was really impressed with Emily's core strength - quite surprised when Emily could go from a prone position to sitting upright with no assistance. Nice to know that a lot of the strength from all of those years of training is still there.

Her OT tried adding a 1-pound weight to her right wrist and it seems to help tremendously with her tremors. Last night when we were sitting on the patio before dinner she was doing bicep curls with it. She thought it was a pretty funny joke (which it was).

I'm trying to encourage Emily's independence as well. I'm always there to help, but I've started asking her to head to her next class by herself and staying back more during class. So far she's done just fine.

2007-07-09T19:36:00.000-07:00

I'm glad Emily's friends enjoyed getting e-mails from her - she's been trying very hard to get on-line and check e-mail and is always disappointed if no one is on-line to chat. Keep checking on the weekends and in the evening - she just might be there!

We just hung out at home on Sunday and watched a couple of the first Harry Potter movies. Emily's right - there was marked improvement with the third movie. Hopefully the new one is as good. We're planning to see it on Saturday.

Emily had a good day of classes today. Despite massive casts on both her right arm and leg, she still got in 3.5 km on the exercise bike, stood for 1/2 hour, and did the rest of her regular classes. She's getting better and better at coming to a standing position although she can't quite stay standing yet without help. She did maintain her balance on her knees for 15 minutes today without much help - it's a good first step. She's still easily the most eager, willing participant in her classes, although her speech therapist said today that she wants Emily to reserve her excitement for the things she's really excited about. Personally, I think she's missed the point - Emily is truly that excited every time she remembers something that's happened recently.

Emily's voice continues to get stronger, so her vocal chords are healing. We've started to see her right eye move past mid-line to the left, which is a good sign. She'll need to see the eye doctor again soon. Her long-arm cast comes off tomorrow. Whether or not she needs another depends on how well she can keep that right arm relaxed and straight without it. She has been better able to keep her hand relaxed once I stretch it out - and stretching it out is no longer a 2-person job. She's also getting more and more movement in the right leg, despite the 10-pound cast. We won't know how we'll be proceeding with surgery on the right ankle until Dr. Weintraub gets back on Wednesday.

Emily has received three lovely letters from her friend Katherine who's in New Hampshire for the summer. She working on writing Katherine a letter this week with Robyn her OT.

I'm sorry to any folks we missed who wanted to visit at Craig this weekend. Now that we can take Emily home on the weekends it seems to be frowned upon when we don't. Please feel free to visit during the week after 4:00 and to give us a call at home on the weekends - you really are welcome to visit here.

2007-07-07T19:08:00.000-07:00

Emily had the procedure on her vocal chords Friday morning. Dr. Reed said it went very well - and he even showed me pictures pre- and post-injection. He ended up injecting the collagen into both the right and left vocal chords to help them close, but he believes both vocal chords are moving and neither is paralyzed. The actual procedure took less than 1/2 an hour - slacker Em did OT in her room, and then after I'd brought her lunch to her announced that she wanted to eat in the dining room and do her afternoon classes. Not bad for a TBI on sedatives!

Emily spent much of today just kind of hanging at home. We did stop at Chipotle for lunch on the way home - she really enjoyed her burrito. Once we were home, she checked her e-mail, played some solitaire, rested, and watched TV. We went to 4:00 Mass at Good Shepherd, which was really nice, and then came home for dinner.

We'll probably be home for much of the day tomorrow - please feel free to visit. Just give us a call and let us know you're coming.

2007-07-05T20:39:00.000-07:00

Emily's speech therapist officially declared she it "out of PTA (post-traumatic amnesia)." This means that she is processing and remembering new information. It's a really big milestone. Katie also commented that her processing time is improving - she can see, learn and understand things more quickly.

Emily got her ankle/leg cast today. It's giving her ankle a much needed rest/recuperation from the rolling we've seen, but the cast and the nerve blocks have done nothing to loosen her achilles. I'm going to talk to her doctor tomorrow about proceeding with the surgery to lengthen her achilles - since we only have 6 weeks left at Craig, I want to get the ball rolling before the weekend if possible.

Speaking of ball rolling - Emily finally has her vocal chord procedure tomorrow. Her voice is getting stronger, but it just takes so much energy to talk and be heard. Once she's talking better I think she'll be more comfortable having her cell phone available for evening calls from her friends. She's never been much of one to text message, but I've actually heard the therapists refer to that as good therapy so it may be an option as well.

The other big development for today is that Emily got to stand at the harness table this afternoon. At the harness table she comes to standing from her chair and they use a belt to help keep her hips, knees and ankles where they need to be. This requires much more physical control than the EZ Stand that she's been doing for the last couple of weeks. In the EZ Stand, she starts out sitting and gradually rises to a standing position, but she's pretty locked in - it doesn't require nearly as much balance on her part. She looked really good and I know she felt good standing more naturally like that. Plus while she was standing we played volleyball with a balloon, which required her to move her upper body, while she maintained her balance, while she was standing. I really wish I would have had the camera so I could have taken a picture.

While Emily was standing at the harness table, our friend Z from Las Vegas was in the harness/treadmill apparatus (it has a name that I frankly can't remember). Z has a spinal chord injury and he bore weight on his legs for the first time today and then was able to walk on the treadmill with assistance. It was wonderful watching Z and his lovely wife Tonya. Little miracles happen every day at Craig- you just have to watch for them.

2007-07-04T03:44:00.000-07:00

So on Tuesday they put a long arm, fiberglass cast on Emily's right arm. Since the purpose of the cast is to give her elbow a prolonged stretch, her arm is casted in a straight position that adds a whole new dimension to transfers to/from the wheelchair. This cast will stay on for a week, then it will come off and they will evaluate whether the nerve blocks and casting have addressed the tone in her arm (her tendancy to clench it tight to her body with her fist near her chin like a newborn). If a week in the long-arm cast resolves the elbow issues, next weeks cast will focus primarily on the wrist; if not she'll need another long arm cast that probably incorporates her wrist. She's scheduled for the nerve block shots in her right hand and shoulder on July 12.

On Thursday they'll cast her right ankle. There's some concern about her ability to handle two casts at once, but the ankle cast is critical to getting her standing and (hopefully) walking. On Tuesday when we tried to have her stand for a prolonged period (15 minutes is "prolonged" in the land of traumatic brain injury), she kept trying to put all of her weight on her right leg, which would be a good sign if she had a stable ankle. Her right ankle is really a worst-case scenario - the foot is so firmly in a pointed position but the ankle is incredibly wobbly left/right. There's just no way to stabilize it and help her get any sense of balance outside of the EZ Stand - and the EZ Stand doesn't require much of her in terms of balance (although we did eliminate the chest strap on Tuesday which left her completely in charge of her torso, neck and head).

Our schedule for Wednesday is to be at Craig till lunch and then head home for the afternoon. We'll head back to Craig around 6:00 for the 4th of July karaoke and fireworks event. The house is a bit of a disaster right now (a combination of neglect, summer (it's so much easier to keep a house neat when no one's home), and construction), but if you'd like to stop by give us a call and let us know. We'll probably plan on dinner around 5:00.

2007-07-02T20:16:00.000-07:00

On Sunday, Em and I had breakfast, she rode the bike-to-nowhere for 20 minutes, I worked on stretching/massaging her right arm/shoulder, we went to chapel services, and then went home for lunch and R&R. After eating and lounging on the couch for a few hours, we went to visit our neighbors Dave and Lisa and their two sons. Dave looks good and appears to be recovering from his surgery. He has a couple more weeks of recovery before he starts radiation.

Emily's voice was much stronger today and she was much more vocal. She had her usual round of therapies. Probably her biggest accomplishment of the day was "standing" on her knees completely unassisted for almost a minute. Since she can't try to stand unassisted on her feet until we get the ankle issue resolved, this is the closest we can get and gives her the sensation of tucking her buns, pulling back her shoulders and maintaining her balance. She did great.

This afternoon we went for our first swim. I learned a lot. It's very difficult for brain injury patients not to suck in under water - so the first "task" of the swim was to overcome that urge. Emily, as a long-time competitive swimmer, took to the water immediately and surprised her therapist with how naturally swimming came to her. The other thing I learned is the pool was cooler than normal - around 85 degrees vs. its usual 90+. Not a big deal for any of us, in fact it felt very nice to me. But brain injury patients have a really tough time controlling their body temperature and the muscle tightness (tone) in her right arm got significantly worse in the "cool" water. In any event, she enjoyed it and got out of her chair in an upright position for an hour, so it was worth it.

Tomorrow they'll put a cast on her right arm to give her tight muscles a prolonged stretch. On Thursday they'll do the same for her right ankle. Hopefully all of this will help her regain the use of her right limbs. Her leg is much recovered - she can almost always move it on command, but she still can't flex her right foot or consistently, purposefully move her right arm. The other thing I learned today is that the large muscles recover the quickest - that's why her leg is so much better than her arm. The smallest muscles will recover last, which means her right hand will be the last thing she'll be able to control.

2007-06-30T21:24:00.000-07:00

We had a nice relaxing day. Em had breakfast with Dad, company in the morning, some time in the garden before it got too hot, a nice nap after lunch, some PT with Mom, followed by mini fruit pizzas and a nice visit by Ms. Dubrava in the afternoon. Ms. Dubrava, who will be taking over as head of the Creative Writing Program at DSA in the Fall and has also been Emily's Spanish 2 teacher, brought along a lovely book of Mexican and Latin American poetry. Emily did a great job of understanding the Spanish. We discussed my "plan" and she agrees it might be the best alternative - so we'll just have to see.

Ken and Hannah brought pizza for dinner and then we went to see "Bridge to Terabithia" in the Craig Entertainment Room (they have a 110" projection TV, so it really is a cool place to see a movie). It's an incredibly sad movie. Emily said she liked it and it was a good screen adaptation. I'm trying to give Hannah the assignment of reading the book to see if she agrees with her. "Trying" being the operative word.

Tomorrow we're going to TRY to take Emily to Good Shepherd for 10:00 Mass. She really enjoyed Father Neal's visit on Thursday and told me she'd like to go to Mass. Then we'll come home for lunch and head back to Craig between 3:00 and 4:00. I hope that works with everybody's plans to visit. Company is welcome until about 6:30 when it's probably time to take a shower and head to bed.

Remember we're also usually just relaxing Monday-Friday from 4:00-5:30 after she finishes classes and before dinner, and now that she has more stamina that a fine time to visit.

COOL by Emily Boldt, June 29, 2007

2007-06-30T07:17:00.000-07:00

The sky is falling
The clouds are falling
The wintertime is falling
The snow is melting

Happiness fills my soul
My soul is completely full

A fish is full of happiness
A fish is full of everything

This is the first thing Emily has written since the accident - she wrote it herself with a little keyboard help from Robyn her OT.

2007-06-30T06:59:00.000-07:00

Sorry I didn't get a post done last night - I was too hungry when I first got home and then fell asleep watching TV with Hannah later. I thought about doing the post when I woke up and went to bed, but I know how worried everyone gets when I do posts at 2:00 a.m.

There was a mix up with Swedish about the surgery on Em's vocal chords, so it had to be rescheduled for next Friday. We'll just keep doing her vocal exercises in the meantime. All of the pain from the nerve blocks seems to be gone - now it's just a matter of consistently stretching her ankle and calf to get her normal range back. I'm going to try my hand at new duties in my alternate career this weekend and work with her on standing at the parallel bars. The supervising PT actually suggested I use the EZ Stand, but Dan came to my rescue and told her I'd need more training (ya think!).

Work on the house is coming along - Mike Hughes with Partners Construction has really come through for us. Ken went to have breakfast with Emily (Saturday is biscuits and gravy) and then he's going to spend the rest of the day working on cleaning/rearranging the garage to make room for a ramp if it's needed. Since I can't transfer Em to the car by myself and I need the gym at Craig to work on her stretches, we'll be hanging there today. Ken and Hannah will come by around 5:00 with dinner and then we're headed to the Saturday night movie at Craig. It's finally "Bridge to Terabithia," so we'll see what Emily thinks of the screenplay adaptation.

2007-06-28T20:29:00.000-07:00

Ken and I never want to seem ungrateful - Emily didn't die and we got her smile back, we have much to be grateful for. That doesn't change the heartbreak of telling her she won't be able to go back to school in the fall, but we've wrapped our minds around it and have a plan to discuss with Ms. Dubrava.

Emily is starting to show definite signs of recovering her short term memory, which is a really good sign. No surprise, but it seems that writing things down for her and having her read them is very helpful. Sometimes it's simple tasks - like when you wake up in the morning you need to push the red button so the nurses know you're awake (she's remembered for 2 days!). Other times it's trivial - what did you have for breakfast. Even her Speech Therapist was overjoyed when she got that one. She also seems to revel in being able to remember things. Being able to retain new memories is a big milestone. By the way, her reading comprehension continues to be very good.

Emily had her first round of nerve block injections for her right arm and leg. The concept behind the injections is to numb the muscles for a period of time and then use casts to stretch those muscles to a more normal position. I'd been warned that it was uncomfortable, but having stoic Em almost fly off the table was a little more than I expected. She'll have another round of injections on July 12, but the ones today are intended to help her right ankle maintain a normal position and relax her right arm to a nearly straight position. She was very sore and extremely worn out after the procedure and was in bed by 6:30. The goal for tomorrow is to get her ankle in a neutral, or flexed-foot, position and get her into a cast - we'll start with the EZ Stand at 8:30 and continue with a physical therapist at 9:30. Getting that right foot in a normal positin and the ankle protected is key to moving from standing to trying to walk. She has been able to move her right leg in PT more in the last few days, but tonight she was able to pull her knee to her chest and straighten her leg 4 times.

The surgery for her vocal chords is tomorrow. It will involve a local anesthetic and take about an hour. Hopefully the collagen will help the left vocal chord meet the right, strengthening her voice and eliminating her swallow issues. The collagen is only a temporary fix - the real key is the vocal exercises we do with Em in all of our spare time.

2007-06-27T19:06:00.000-07:00

Okay - for all of our sakes I'll try to channel "positive Barb" tonight.

Emily had her first post-accident vision test today - if anything her vision in the right eye is slightly better than the left, so there's no vision loss. Tomorrow we'll start eye stretching exercises to try to get her right pupil to move up, down and beyond mid-line. I'll be trained on the exercises so that I can add that to range-of-motion and voice exercises I'm already trying to squeeze in between classes along with bathroom breaks. Actually, we've started doing her range-of-motion in bits and pieces throughout the day - for example I do her right hand while she's in the EZ Stand at 8:30 every morning, and we did her vocal exercises while she was resting this afternoon. It's still a pace that makes the average school/work day pale in comparison, but I think that way goes "negative Barb."

Emily's strength has gotten much better. Last week it was taking her 20 minutes on the stationary bike to go 2+ km. On Monday she did the same distance in 18 minutes. Today she did almost 4 km in 25 minutes. She really seems to enjoy rocking out to her Ipod and biking - given all of the hours she's spent on our exercise bike it probably feels very natural, dare I say almost normal.

The muscles in Emily's right leg continue to respond more consistently. She's doing perfectly balanced bridges now (hip raises for you non-yoga types) and managed 10 reps on a right-leg only bridge today.

Finally, our dear friend and neighbor Julie, who's been coordinating everyone's efforts to help, will be going out of town with her family soon so she will no longer be available to coordinate. Rather than distracting our very small neighborhood from the new priority of helping Dave & Lisa Spence, Ken and I have decided it's time to stand on our own two (or would it be 4, 6, 7 or 8? Remember one of Em's legs doesn't work very well right now) feet. All of our wonderful friends can't keep feeding us forever. There are undoubtedly some of you who will still want to help and we truly do appreciate it. All of you know how to contact either Ken or me directly and we can coordinate. Also don't worry we won't starve - Julie's making sure the freezer Ken will go buy on Saturday is well stocked before she goes. Thanks to all of you for your time and financial contributions - it will never be possible for us to truly say thank you.

2007-06-26T18:56:00.000-07:00

Sometimes it's scary to contemplate how a few minutes on a ski hill can change an entire life. Emily is officially scheduled to come home on August 17 - just 7 weeks. When she comes home she's still likely to need a wheelchair, but she will hopefully be able to stand, transfer and maneuver independently. She will not be able to return to school in the Fall. Once she completes her inpatient care she'll have "months" of outpatient therapy. No one will speculate where she'll ultimately end up in 1-2 years. Cogntively - there are still very high hopes. Physically - she may have weakness/limitations on her right side and tremors/control issues on her left side for the rest of her life.

She does have things in her favor - her age and her sex. For reasons no one understands, the female brain tends to recover "better" than the male. The research seems to indicate there is a link between the brain's ability to recover and female hormones. The down side is some of the drugs they could use to help her speed up her brain's processing abilities have only been tested on older boys, so it's really not known if they might interfere with her natural ability to recover. At this point, her doctor is hesitant to prescribe more meds unless she fails to meet certain milestones in the next 1-2 weeks.

There's no dispute that Emily's going to make huge improvements in the next 7 weeks. I'm not sure her doctors/therapists and I are in complete agreement on where she's at today. I see her reacting to my wise cracks in exactly the same way she would have pre-accident. This tells me she's mentally processing pretty normally but she's obviously not where they want her to be on the various tests they give her.

The ENT did his evaluation of Emily's vocal chords today. The good news is that both vocal chords are moving, the left is just slow and not meeting the right. The solution is a collagen injection to help her voice/swallowing while we continue exercises to strengthen her vocal chords. And no, I'm not sure I'm spelling "chord" right - it frankly doesn't look right, but I'm too tired to look it up. Who knows - maybe she'll just wow them when it's easier for her to talk.

2007-06-26T03:51:00.000-07:00

Emily really enjoyed going to the movies Sunday afternoon and getting take-out pizza for dinner. We ended up seeing "Fantastic Four - Rise of the Silver Surfer;" it was entertaining and we were frankly worried that the 3-hour Pirates movie would be too long for her at this stage.

Monday was incredibly busy - Emily barely had a break between 9:00 and 4:00. Emily went to her first mat class with the other patients and therapists. She did very well. Not only are the exercises and stretches good for her, it's also great practice at following instructions. In PT her therapists was amazed at how well Emily is coming to a stand - huge improvement since just last Thursday. She was also doing more of the exercises with her right leg, which is a good sign. Her OT put a patch on the right lens of her glasses to help her avoid double vision now that her right eye is almost completely open. She's got an appointment in the vision clinic on Thursday and we'll probably get some exercises to help get the movement in her right eye stronger and get both eyes tracking together. We'll also see the ENT sometime this week for her vocal chords and start the muscle injections to get some relaxation in her right arm and ankle. Once we get the ankle to neutral, she'll start wearing a boot cast and be able to do a lot more PT to get to walking.

We have our conference with Dr. Weintraub and the therapy team at 1:00 today. This is the conference where we'll get their full assessment, our planned in-patient discharge date, and where we're likely to be then in terms of Emily's capabilities. It will also give us a picture of what kind of modifications we'll need to make to the house.

2007-06-23T19:06:00.000-07:00

Well our first outing went very well. We came home, watched some TV, grilled steaks, watched a little more TV, checked Emily's e-mail (hoping that one of her friends was on-line to chat) - generally had a lazy Saturday together as a family. Emily still struggles a little with the keys on her computer, but she was handling the cursor and touch pad all on her own. The dogs behaved themselves remarkably well. Emily has a couple of scratches from Spike trying to get up on her lap while she was in the wheelchair, but nothing serious. We actually got a great picture of him laying on her tummy while she was resting on the couch. She particularly enjoyed lounging on the couch and watching Hannah play with her remote control Bratz skater girl.

We'll check tomorrow to see how tired out she is from today's outing. If she's not too worn out, we'll probably go to chapel services at Craig at 10:30 and then maybe go see a movie in the early afternoon. We should be around for visitors between 9 - 10:30 and 11-1. If Em's up for it, I was going to suggest we pick up pizza and take it back to Craig after the movie, so we should be around from 5-6 as well.

Ken and I both noticed how much more Emily is able to help with her transfers in just the last few days. I took my first shot at helping her stand just a couple of days ago and there was a world of difference today (my back doesn't even hurt!). She had a little trouble earlier today remembering that today was Saturday, but once she got that today was Saturday she had no trouble remembering that tomorrow was Sunday.

I also realized when Nancy and Steve were surprised to see it that I had forgotten to mention that Emily drives her own wheelchair now. She can use both her left arm and leg, but she usually chooses to propel with the left leg and do brakes on/off with the left hand. When she's tired she crosses her left leg over her right with quite the little flourish.

For those of you who haven't seen her in the last week, it's really hard to describe the incredible joy she takes in everything - especially seeing her friends. If your vision is still of Emily at St. Anthony's or Kindred, you really should stop by and see how much she's improved. If weekdays work better, Emily is finished with therapy at 4:00 and has dinner at 5:30. Most days you can find she and Ken and I relaxing during that time somewhere on 2West or on the front patio where it's shady that time of day. During the day Monday-Friday just doesn't work - her schedule of classes barely leaves time for lunch and a little rest. For our friends in Winter Park, we're hoping she's strong enough for a day trip to the base in the next few weeks (she still has a pair of skis and her boot bag in the Comp Center locker room we need to pick up). We'll let you know via the blog when that will be.

For everyone praying for Emily please add our friend Dave Spence to your prayers. He was diagnosed about a week ago with a very rare form of cancer in the muscles of one of his legs. We're hopeful that the surgery got it all, but they had to remove a significant portion of his quad and some of hamstring muscles in that leg. Dave and his wife Lisa have been wonderful to us these last 84 days (Ken counted them today), and we hope to be able to reciprocate in any way possible.

2007-06-23T06:09:00.000-07:00

Emily had a good day on Friday. So far the cognitive testing shows that her long-term memory is fine. She's having a little trouble remembering new stuff, but that's very common and there's lots of ways to help her that we're working on. She got to play hockey in mat class today and she had a wonderful time and did very well. Speaking, while soft, is coming more and more naturally. She'll see an ENT in the next week or so who will look at her vocal chords - it's very likely they were damaged when she was intubated right after the accident. Nothing to worry about, there are injections that can help repair them. She has an appointment in the vision clinic next week to check on her right eye - we honestly don't know if she's having any vision problems.

We will be bring Emily home for a visit and dinner this afternoon. If you'd like to visit her today, feel free to come by between 9:00 and Noon. She'll be back at the hospital this evening, but she'll probably be very tired from her visit. We'll see how today goes before deciding about tomorrow.

Thanks for your understanding and support.

2007-06-21T19:37:00.000-07:00

Emily and I are so busy during the day going to class (at Craig you go to class, not therapy, and you graduate, no discharge) that we don't get a lot of time to just talk. Last night Emily and Ken were sitting in the Craig garden and Ken asked Emily what she was thinking about. "Life," she responded, and then she said, "Sometimes I feel like crying." Ken told her he understood and in the process was struggling not to cry. Emily looked at him and said, "You don't have to cry for me."

Late this afternoon, after all the therapy ("classes"), Emily and I got a chance to visit. I asked her what worried her most, and she said "dieing." I told her she wasn't going to die, then I walked her through how close she came to dieing right after the accident and the pneumonia, trach, lung congestion, ventilator. She just kept nodding her head and saying "okay" and "now I understand." She told me how much it helped to have me there every day, and then we talked about where we go from here - getting back absolutely as much of her life as we can.

We met with the doctors in the spasticity clinic today. They hope to start treating her ankle next week and then move on the her right arm, shoulder and quad. Basically they use Botox and other meds to help muscles relax and respond more normally. Emily was actually very adament that we start with the right ankle - getting that ankle figured out is key to her being able to walk and even though we didn't explain that to her ahead of time, she somehow knew.

In PT this afternoon she stood at the parallel bars - not on the tilt table or the EZ Stand - for the first time. She needed help getting up, but once she found her center she did pretty well. She also spent a lot of time in PT and OT demonstrating her trunk strength. We're very close to losing the head rest on her wheel chair since she only uses it for weight shifts. If she can control her trunk she can do forward weight shifts and won't need the head rest any longer.

Ken and I haven't formally passed our car transfer training, so we don't know for sure if Em will be able to come home with us for a few hours this weekend. Tentatively, I would expect that she'll be at Craig until after lunch and then come home in the afternoon. Once we know for sure she'll be able to come home we'll let everyone know in a new post.

2007-06-20T20:26:00.000-07:00

Emily continued to be all smiles today. I honestly don't know what it is in her spirit that allows her to be so incredibly happy through all of this.

She's taking all of her meds by mouth now, so her doctor wrote an order for the g-tube to come out. It may take a couple of days, but she'll be tube free soon. Dr. Lenig, who is Dr. Weintraub's partner, told me today she loves covering for Dr. Weintraub because she gets to see what progress Emily's made. Emily continues to amaze people with how quickly she's progressing.

She was much more talkative this morning. It's becoming more and more natural for her to answer in response rather than give a thumbs up. Her Rehab Tech today hadn't had her for a couple of weeks and was amazed.

At breakfast this morning she literally lit up when I told her she could have scrambled eggs, sausage, and toast. She so enjoyed her breakfast. For lunch she finally got her salad and her sandwich. She liked it so much she told her speech therapist that she had lamb chops for lunch. Guess I know what we're having for dinner one night this weekend.

Ken and I finished our off-campus training today (hills and curbs) and started our car pass training. We did pretty well, but we need to do it one more time on Friday afternoon before our "get out of jail free" card is official. Personally I don't think the process was designed for a 5'9" patient with equally tall or taller, and overweight, parents but somehow I know we'll manage. No overnights yet, but afternoons at home are within site.

Please keep praying - we see little miracles every day.

2007-06-20T05:15:00.000-07:00

They've started doing some cognitive testing with Emily. She's doing very well. I was there for some of the reading comprehension and was impressed by the pretty complex paragraphs they were asking her to read and answer questions about. There are a couple of exceptions - she doesn't seem to be able to remember that she's 16 now or why she's in the hospital. Everytime one of the therapists asks her why she's in the hospital she has a different explanation. This seems odd since the first time she saw the neuropsychologist she remembered a fair amount of detail from the day of the accident. She has a new Orientation Class every morning to help her rermember things that are happening now.

She was an incredible trooper in therapy yesterday. She did a full hour outside during OT working on her observation, memory and speech in a distracting environment, and she did absolutely great. She also passed her test in ST to be upgraded to a regular diet. She got to have a salad with dinner last night and I'm going to get her a sandwich for lunch today. During PT she endured 1/2 hour of Mom-training on chair to bed and chair to toilet transfers and then proceeded to spend the second half hour standing (her choice, she had the option of mat work instead). Her PT actually teared up at how hard she's willing to work. The staff at Craig has given her the "happiest, most friendly patient" award because she says "hi" and waves to everyone she sees in the halls. Her ability to stay cheerful throughout this ordeal simply amazes me.

Today Ken and I are scheduled for car transfer and off-campus training. Assuming we pass, that means we'll be able to leave the hospital with Emily for part of the day every weekend and holiday. No overnights yet, but it's a chance to have dinner together as a family at home!

2007-06-18T22:20:00.000-07:00

Emily had a great Monday following the "all birthday, all the time" weekend. She woke up to her favorite Rehab Tech, which she was obviously happy about. The days go so much more smoothly when she has a Tech that both of us are comfortable with.

She moved her right leg today - and then moved it again on request. She's moved her right leg many times before spontaneously, but today was the first time she moved it in an obviously purposeful way and then moved it again on request. In OT she moved from sitting work to kneeling. She told me it felt good to be more upright. I understand now that it's a progression - head control, trunk control, kneeling, then standing. In PT her therapist had her using her left arm/hand to stretch her right arm. She really did seem to have a new awareness of her right arm when she was stretching it herself, and she got it much higher than I'm usually comfortable going. Her right ankle seems to be loosening up a bit - they had to adjust the foot rest on her wheelchair to a more "neutral" position today after she complained her ankle hurt.

Emily is getting more and more comfortable with her voice. On Saturday she announced at dinner that she'd really like to have a sandwich. Sunday when Hendo visited she asked him if they could ski together again. Today during OT she asked her therapists "why are we doing this?" She seems to work much better when her therapists explain why they want her to do things.

Her doctor is going to have her seen by the vision clinic and have her vocal chords looked at. The neuro-ophthamalogist will be able to tell us the best way to get her right eye working while avoiding issues like double vision. A more detailed look at her vocal chords will give us a better explanation for her difficulty speaking in a stronger voice.

All in all she continues to make good progress and surprises her therapists and nurses with her progress.

2007-06-15T22:56:00.001-07:00

Sorry I haven't posted in a couple of days - the whole birthday celebration was really exhausting.

First I want to say thanks to Sarah for asking for Emily's address - as everyone heads out on summer adventures, I know Emily would love to get postcards. Her address is: Craig Hospital-Room 215B, 3425 South Clarkson, Englewood, CO, 80110.

Emily had a wonderful 16th birthday. The Craig staff started decorating her wheelchair on Tuesday. By Thursday they had her wearing this ridiculous birthday hat (sparkley green of course). I honestly couldn't believe she was willing to wear it, but she seemed to be enjoying the spirit of the event. I'm not sure there are any helium balloons left in the greater Denver area - it's a good thing her roommate was discharged on Thursday! I also think she's gotten cards from every resident of Fort Madison and much of the state of Iowa. Thank you Grandma Nancy (and Grandpa Don, but I suspect Nancy's handiwork). Staff threw her a surprise party at lunch complete with a large and loud rendition of Happy Birthday and strawberry cupcakes. Everytime anyone asks her what she got for her birthday, the first thing she says is strawberry cupcakes. The incredibly thoughtful gifts and cards from the other patients and staff were so touching - roses and candy from Jon, a journal and Birthday Beanie Baby from Michelle, homemade cookies baked by Laura's son, a beautiful handmade wooden guardian angel picture frame from Virginia. It's just all so humbling.

Thursday evening we had a family birthday celebration in Craig's Friendship House party room. It was a beautiful night, so we got to eat outside near the fountain. Hannah deserves much of the credit for planning and executing the event. Once we agreed on a menu that Speech Therapy approved, she and Andrew shopped for ingredients and picked out and decorated a cake. Then Hannah supervised Uncle Gary's preparation of the twice-baked potatoes and helped him get everything to the hospital. Emily obviously enjoyed her first non-hospital food in 2-1/2 months.

All of the gifts from family and friends are truly appreciated. I'll get proper thank you notes out as soon as I can, but please know our thoughtfulness is appreciated. Emily now has nearly as many angels in her room as balloons.

In therapy Emily continues to make truly amazing progress. She now rides the exercise bike for at least a few minutes everyday. Her voice continues to get stronger - if you remind her to really take a deep breath it's very audible and as far as we can tell completely clear. It seems the concerns about slurred speech in the beginning proved unfounded. She's helping more and more with things - her transfers, her showers, getting dressed. She had a follow-up swallow test today and she got clearance for thin liquids and she'll probably be upgraded to a normal diet on Monday. Next week her days get that much fuller with an orientation group every morning at 9:00 a.m. and a session on the exercise bike every afternoon, on top of an hour with each of the therapists every day.

Last night Emily responded to an "I love you" from Hannah with a whispered, "I love you too." It meant so much to Hannah. Today, Ken gave me the afternoon off, so he got to go to Speech and PT with Emily while Hannah and I had lunch and saw a movie (Emily agreed with me that Hannah needed some Mom time). When we got back to the hospital a little before 5:00 Emily had just finished her shower and she demonstrated what she'd worked on in Speech by saying, "Hi Mom, I love you," in a very clear, audible voice. Her doctor asked me today if we'd seen any signs of anger or depression and I could honestly say absolutely not. You can certainly tell that therapy is hard and sometimes it hurts and she struggles, but she never gets angry or frustrated, she just keeps working at it. She's always all smiles when I get there in the morning ready for another day. She's truly an amazing person.

2007-06-12T18:54:00.000-07:00

It's hard to describe to those of you who haven't seen Emily over the last month and a half what a transformation we've gone through. I think Uncle Gary described it best: she was always there, she just needed to dig through the layers. It's so incredibly fun to have her back. She's so happy it's contagious. That smile of hers has brought tears to the eyes of so many people the last few days. Even when therapy is hard, which it often is, you just get that determined face that Hendo always commented on. Whenever therapy gets tough, I ask her "is this harder than working on your heli." So far she's always answered, "only a little."

When I got to her room this morning, she was all smiles as usual. As I do every mornig, I asked her what she'd like to listen to while we got ready for the day. She surprised me by answering "Michelle Branch." Well I didn't any Michelle Branch with me, but how cool - she'd obviously thought about music and decided she wanted to listen to Michelle Branch. By the way, she settled for The Fray.

She had a fabulous hour with her OT today. They spent about 1/2 of their time working on that tight right shoulder and the rest sitting up and multi-tasking. Emily sat on the edge of the mat table for 10 minutes straight today without any support! During the sorting, multi-tasking, balance exercises her only sin was trying to take short cuts - as in, want me to sort a deck of cards into blacks and reds, well I'm going to look through several and if there's 4 blacks in a row, I'm taking them all. In speech she worked on vocalizing and reading. In PT she did a strenth test, some stretching and then 1/2 mile on the exercise bike. On the bike she was using her right leg, as I'd hoped, but the tightness in her ankle was pulling her knee out of alignment. We may be facing minor surgery in the near future to loosen that right ankle. It won't be a big deal (her scar will be way smaller than mine) and it will likely make a world of difference in her ability to use her right leg.

2007-06-11T18:37:00.000-07:00

Emily got her smile back. We saw it yesterday, but today it was out in force. She looks like Emily. It's that big, wonderful, "I love life" smile that she's always had. She's just so incredibly bright eyed and present it's just wonderful.

She's starting to naturally try to talk to answer questions. Most of the time there's no real voice, but every now and then she surprises you and is able to vocalize what she's trying to say.

Even some of the patients and families at Craig that are struggling the most seem to respond to Emily. I just keep thinking - what is it about this girl that just draws people to her even when she can't speak. Then I remember what one of the kids said to me when I visited DSA after the accident: "The thing I like about Emily is she always treats me with respect. Even a nerd like me, she treats with respect." That's Emily.

During PT today, she stood in the EZ stand for about 1/2 hour and then did some sitting work. We played Boggle again while she was standing. When we asked her to spell any word she wanted without a card, she wrote "ode." Only one of Mrs. Clark's creative writers would immediately spell the word "ode." During her 1/2 hour sitting on the edge of the mat table, about 1/3-1/2 of the time she was sitting all on her own with no help from the therapists. She also surprised her therapists today by asking when she can join mat class and start riding the exercise bikes.

Continued thanks to everyone for their thoughts, prayers and support. I don't know how we could do this without all of your support.

2007-06-10T19:53:00.001-07:00

Correction from yesterday's post - Steve asked Emily if HE was a nerd, and she immediately gave a thumbs up and laughed.

Today was another amazing Sunday - they seem to be Em's day.

She slept in a little and was bright eyed when I got there. She had a lovely breakfast, had communion from the Catholic Eucharistic minister, and then we went to Chapel services. This week's surprise at Chapel was even bigger than last week. Near the beginning of the service the minister asked if anyone had someone they wanted to pray for. Brooke said she wanted to pray for the caregivers. Jon said he wanted to pray for his Dad and Jack who were riding their motorcycles in the mountains. John, Lindsey's Dad, wanted to pray for all of the patients. Up until this point, with a few exceptions, Emily had talked in response to a request ("say Hi to Dad"). She suddenly raised her hand and trying her best to be heard said she wanted to pray for "Jon and his Dad." Jon is a 19-year old from Sidney, Nebraska who was hurt in a car accident. Both his parents are wonderful, but Brent, his Dad, noticed Emily very early in her stay at Craig and last week he was the one that started teaching her sign language. When I asked her later, she told me she wanted to pray for Jon and his Dad because they'd been so nice and helped her talk.

This afternoon Emily had lots and lots of company. Some of her visitors she's seen pretty regularly since she's been at Craig - Caroline & Julie, Laura and "big" Sandy - and she was obviously glad to see them. But she hadn't seen Julie and Mrs. Clark from DSA since she's been at Craig, and Ariel, from the WP Freestyle Team, and her Dad, Pete, hadn't been able to visit. Emily just beemed - it was the smile from the WP Season Pass - she literally glowed when she saw them. She also seriously enjoyed both seeing Miss Jan from Good Shepherd and the chocolate milk shake she smuggled in. The look on Ken's face when I describe that Jan held the milk shake low and I stood in front of the video monitor was priceless!

It was another good weekend, and we can't wait to hear how the therapists react to her new accomplishments tomorrow.

2007-06-09T22:36:00.000-07:00

Yes I was too tired to do a post last night. I apologize to all of you who worry every time I miss a day.

Emily continues to adjust to her new diet and new wheel chair. Both take a lot more energy and she gets really tired. She was able to sit completely upright for a few seconds several times on Friday morning in OT, but she struggled Friday afternoon in PT. Good news is, a few weeks ago if she struggled it was for a day, now it's for a couple of hours.

On Friday she laughed at her Rehab Tech, but only the three of us saw it . Today, when Steve asked her if she was a nerd she immediately gave a thumbs up and laughed. The Metro folks will appreciate just how appropriate that response was.

2007-06-07T20:08:00.000-07:00

So Emily talked today. Her speech therapist has been working with her on mouthing words for a couple of days. When they came out of ST today, Katie was excited and said Emily had been able to whisper words to her pretty consistently. Emily looked uncomfortable and I asked her if she needed something. She whispered "spray" for her Chloraseptic throat spray (which she hates but also realizes helps with her sore throat). I intentionally didn't call Ken. When he got to the hospital tonight I asked him to listen closely, and I asked Emily to say Dad. It was still soft, but this time you could really hear her voice. While Ken was composing himself, I told Emily that we needed to practice saying Hannah so she could say hi to her sister when she visited this weekend. She immediately said "Hannah" softly but clear as day. Soft, whispery, but no slurring or hesitation. It was a very good day.

In PT this afternoon I again had to lead the transfer from the chair to the mat table. I remembered everything except the brake extendor, and the transfer went very smoothly. Her homework was exercises to help her use her left leg to move her right leg. The PT's have started showing her how to hook her right leg with the toe of her left foot to move it. She also spent about 1/2 hour in the standing chair. While she was standing, she and I played Boggle. From the very first word she had no problem reading the word and spelling it with the letter dice. By the third word she'd figured out that the letter dice were grouped by proximity in the alphabet and her spelling got that much quicker. When she got bored she started trying to launch the dice at my head.

Today was the 100th anniversary celebration of Craig Hospital. In 1907 Craig started as a tent hospital for TB patients regardless of their ability to pay. It later evolved to treat polio patients and is now one of the few rehabilitation hospitals in the United States that specializes in just spinal cord and brain injuries. Ken and I didn't realize until recently that unlike most hospitals today, Craig is a nonprofit. In this era of health-care uncertainty, Craig has announced a goal of increasing its endowment to ensure it can provide care to the people that need it regardless of their ability to pay. Ken, Emily, Hannah and I are so blessed in so many ways - the incredible insurance coverage we have through the Federal Reserve System, Metro's leave policy that has allowed me to be with Emily from day one, and the fact that we live 15 minutes from Craig as opposed to the families we've met from all over the country. When we get through this, we really hope that all of us that love Emily can do something in her name that will benefit Craig patients in the future.

2007-06-06T21:09:00.000-07:00

A very interesting day. Emily passed all of her solid food swallowing tests with her speech therapist and was upgraded to a soft diet from the pureed one. Hurray - she gets to eat food that looks like food. Katie continues to work with Emily on how quickly she swallows - she needs to swallow more quickly in order to get thin liquids back. We have figured out what she does and doesn't like in the thickened liquids - milk with thickening powder is a no, fruit juices like apple, grape and pineapple are too sweet, but she's okay with orange juice and lemonade.

Emily also got fitted for her new sports car wheel chair. Her new chair is certainly not ready for a 10K - hopefully wheel chairs aren't a permanent part of our lives - but it's certainly more maneuverable than her old reclining one. She can learn to propel herself in this one by using her left hand and left foot. It'll be much better for outings and walks too.

Ken and I have both been trained now to help with Emily's transfers. It's amazing how much more therapy time she gets when we can do a simple slide transfer versus having to use the lift. Emily tries to help more and more, which in itself is good therapy.

Dr. Yarnell told us this afternoon that its good that she can cough and mouth words, which she does more and more these days. That means that speech is just a matter of time (a phrase I could easily learn to hate).

Emily's OT's used an issue of US magazine in therapy today. It was really ingenuous - they used a large rolling board and binder clips to put the magazine up and in front of Emily - she had to sit tall and reach (great for strengthening her trunk and improving her balance) to turn pages, tell us which dresses and shoes she liked, and point to interesting gossip (I had no idea Reese Withespoon and Jake Gyllenhal were dating).

We went to a ceremony and reception tonight for the 4 high school graduates that are at Craig. The Director of Craig spoke and it was a lovely ceremony. One of the young men was hurt in Winter Park (on a jump they'd built for their snowboards at the condo because they weren't scheduled to be on the mountain until Monday) on the same day as Emily. He was one of Emily's neighbors in the ICU at St. Anthony's. He's regained the use of his arms and seems to have an incredible attitude.

2007-06-05T21:06:00.000-07:00

Emily had a break through in speech therapy today - she made the "aah" sound! It was very soft and a little raspy but it was definitely the "aah" sound. She also started working on eating more traditional soft foods, rather than the incredibly appetizing pureed diet she's been on. Her ST said she did very well and that the act of moving and chewing food would be good for the muscles in her mouth and tongue, which will help with her speech, but that Emily admitted that all that chewing made her tired. We're going to try again tomorrow. Katie, the ST (now dubbed "food Nazi") did let Emily have a piece of cake at Bob and Michelle's baby shower tonight, which she enjoyed immensely.

A quick side note: There have been a number of articles in the Post and News the last few weeks about young couples dealing with horrendous injuries at Craig. Bob and Michelle are from Bozeman, Montana. I don't actually know how Bob sustained his injury, but he's been at Craig for awhile and definitely wins the award for patient with the best attitude. He's always so cheerful, as is his wife, Michelle, who's expecting their first baby in 3 weeks. Bob's making great progress and obviously has a loving family, but I can't even imagine.

Back to Emily: In addition to great ST sessions today, she had a full hour session with her OT and did beautifully. Her strength in her trunk and her balance get better every day, and they continue to work on loosening up that right shoulder. Her pec is so tight you can actually see it when you're helping her dress. Robyn, the OT, told me that most patients can't handle a full hour of therapy but Emily did so well she's going to try to schedule her for 1-hour sessions from now on. In PT Emily was doing such a great job holding her head up that she graduated from the slant table to the standing chair. The standing chair allows much more weight to be placed on her feet and ankles, which will help with her turned ankle and dropped toe on her right foot, but requires much better head control. Emily did about 20 minutes really well. She'll use the standing chair a few more times in PT and then sessions in the chair will be added to her daily schedule outside of PT.

Everyday somebody comments on Emily's beautiful spirit and great personality - and these are people that have never even had a conversation with her. It's just so clear that she's there to work hard - she'll get tired and she'll need breaks, but she's going to work hard.

2007-06-04T17:26:00.000-07:00

This morning at breakfast Emily wiped her mouth. Not particularly big news until I add she wiped it on her own (no, "would you like to wipe your mouth prompt") with her RIGHT hand! She has not had purposeful movement in her right arm/hand since the accident. They saw the same movement in OT today, but it was in response to stretching and instruction. This morning she spontaneously lifted her right hand from her lap to her face to wipe it. When I asked her if that was what she was doing, she nodded yes. When I asked her again if she had really just wiped her mouth with her right hand, she gave me a thumbs up.

In speech therapy today, they worked on swallowing - which she was doing much better with - and matching instructions with pictures with a computer program. When we continued the computer program this afternoon, it was obviously too easy, so her ST tried some kind of abstract cognitive questions that she struggled with last week and she immiediately got 80% correct. The cognitive leap I saw in chapel and the garden yesterday is obviously real.

She also had significantly improved balance and trunk control today. Both her OT and PT commented on it. Her PT said we'd keep working on the slant board twice a week until her head control is good enough to move up to the standing chairs, and she didn't expect it to take too much longer. I've also successfully master helping with slide board transfers from the chair to the mat table both front and back.

Another patient's father has started teaching Emily sign language. She can now sign "hi" and "fine." It's a great way for her to communicate while she's getting her speaking voice back. Miss Jan from Good Shepherd may help her with that, and I really need to get a book so I can participate. I just have to believe that using language in any form will help her brain recover.

I got to see two other patients take their first walks today. One is a 19-year old girl who was injured in a car accident a few weeks before Emily. Her mother's always with her and I just couldn't resist giving her a hug - what a huge step.

2007-06-04T04:50:00.000-07:00

I certainly agree with Sarah and Brendan, Epic Movie was really, really bad. I felt especially bad for the older patient and his wife who came expecting to see last week's romantic comedy. I'm not sure Emily enjoyed the movie so much as enjoyed getting out and doing something, although she has always been able to suspend her intelligence and laugh at the absurd.

She surprised me yesterday morning when she said she wanted to go to Sunday church services at the hospital. Ken and I have been letting her exercise her natural skepticism of organized religion for the last couple of years, so I was really surprised she wanted to go. She truly listened and tried to participate - raised her hand immediately in response to a question and holding her right hand with her left and praying. After the service she told me she wanted to go downstairs to the T Rec area, and when T Rec wasn't open, she wanted to go outside. We took a walk in the garden and she was reaching out to touch the plants, flowers and trees. It was a level of active engagement we hadn't seen before.

She seems to be having pain from her torn muscle more the last few days. She tore her quad (largest muscle in the body) up near her right hip. It obviously hurts more when she's up in her chair, which would explain why she wanted to rest in bed more this weekend. The orthopedic surgeon that consulted on it believes it will heal on its own and not require surgery, but we'll have to be sensitive to her pain.

2007-06-02T21:58:00.000-07:00

Pretty quiet Saturday but there are a few things to report. First, we got our first results from Emily's MRI. An orthopedic surgeon examined Emily today because the MRI showed a torn muscle in her right hip. It's not a complete tear and her hip is not dislocated. He said it will heal on its own and will not impact her recovery at all. I'll check with her physical therapist on Monday to see if the muscle tear will affect her therapy. One more piece of evidence that her right side took the impact when she fell.

Second, I took in Em's laptop today. She was immediately interested and when I created a new word document and asked her some questions she tried her darndest to type in her answers. In response to one question she tried to type "sounds good." To another simply "yes." She's still struggling to control her left hand so it took her a few minutes to get to the right key and then she tended to hold it down a little too long, but Ken and I both saw cogent responses and we'll keep trying.

It's much easier to have conversations with her now. She follows exactly what you're saying and responds quickly, usually without any prompting. She chooses to use her head nods most of the time rather than her thumb and tends to revert to her thumb for "okay." She also responds with waves and high fives for staff she recognizes - some of which haven't taken care of her in a couple of days. She obviously knows who she likes.

The whole family went to the movies tonight at Craig. They show a new release dvd every Saturday night in the entertainment room. Tonight's high-brow offering was "Epic Movie." Emily and Hannah both loved it, although it probably wasn't terribly appropriate for either of them. It was really, really nice to do something as a family again.

In keeping with movie night at Craig, we have a new plan to get Emily talking. Those of you who know her well know that she is an incredibly tough critic of movie adaptations of her favorite books. Hannah and I actually swore we'd never go to another movie based on a book she liked after "Eragon." We'd barely recovered from "Ella Enchanted." Thank goodness she approved of Peter Jackson's Lord of the Rings trilogy. Well in two weeks the Saturday night movie is "Bridge to Teribithia," another of Emily's favorites (thank you Becky). None of us have seen the movie and have no opinion on the screen play, but if commenting on a movie adaptation can't get her talking it may be time for extreme measures. I know some folks at the Federal Reserve that have some ideas that may have merit.

2007-06-02T05:52:00.000-07:00

Emily has gotten physically so much stronger the last few days. She holds her head up really well now except when she's extremely tired, and she can sit up right for almost a whole minute. Yesterday in PT she was able to roll to either side from her back without any help and she was trying very hard to help with her transfers from the wheelchair to the mat table. She spent about 1/2 hour up at 70% on the slant board, which is the closest she's come to standing upright in 2 months.

She successfully completed a cognitive test yesterday intended to check her short-term memory, ability to follow instructions and patience. She did really, really well. The only problem she had was when the speech therapist got to the questions with 3 parts, she was supposed to follow the directions in the order they were given. She'd do all three, just not always in the right order. For example, the the instructions were to point to the door, pick up the pencil, point to the floor, she'd get the pointing out of the way before picking up the pencil. It was actually a much more efficient way to complete the tasks. She also started a reading comprehension test yesterday. She can obviously read words and sentences and despite being really groggy when she had her morning speech therapy session, it was clear that she understood what the sentences were saying.

Emily had an MRI yesterday. The purpose of the MRI was to get a more detailed picture of her brain injury and also check the rest of her - we know her right shoulder hurts, so the doctor wanted to check for damage to her shoulder - for any injuries from the fall. Since you need to stay perfectly still in an MRI and that's difficult for most people but especially for Em right now, they had to give her sedation. Unfortunately the sedation kept wearing off so in the end they had to give her 3 doses of valium. She was really tired and groggy all day after that. Hopefully she slept well last night and will be feeling better today despite the cold or spring allergies she's had all week. Last night she told Ken and her nurse that her left knee hurt. That's the knee she she had trouble with all last year - hopefully it just needs to be stretched and she didn't reinjure it in the fall.

2007-05-30T18:34:00.000-07:00

This blog is becoming a bit of a (somewhat frightening) mind meld. Sigrid - you are not the first person to suggest that this blog with the addition of Emily's recollections could be great help to others. I promise we'll pursue it.

Brendan & Shiloh - I just suggested to Em's speech therapist today that bringing in her laptop might be a great way for her communicate. Ken backed up her hard drive just this morning and I plan to pursue this idea over the weekend.

On to today. The swallow test showed that she's not swallowing fast enough for thin liquids. Em's ST thinks this explains the cough. I can't imagine she has any idea how heartbreaking this news is to Ken and me because having her water bottle and taking drinks as she wanted was the only little bit of independence Em has at this stage. It's a stupid, little thing and of course we want to protect her lungs, but it's still hard.

On the positive side - the swallow test showed no issues with chewing and swallowing. So, hopefully, Em will be moving on to a soft-solid diet soon. Hopefully, that is not the "all potatoe all the time diet."

Em's appetite changed significantly Monday afternoon - after a week of trying to get her to eat as much as possible, on Monday evening she went to ravenous. The Craig dietician said she'd never seen anyone wolf down a pureed meal like Em today. The poor thing is starving. She eats every bite of every meal plus snacks. She eats every bite of the unidentifiable vegetable! We increased the size of her entree (protein) serving tonight, so hopefully that helps. Emily has lost over 30 pounds since the accident. Today I had an opportunity(?) to really look at her legs without pants on - my God, those incredibly beautiful, strong legs are sticks. You can literally see her knee joint.

On a more positive note, Em's catheter went away today. We were hoping that the G-tube would go by the end of the week, but the swallow test results on thin liquids mean it will stay for the foreseeable future to ensure she gets enough fluids. Most important, Em made the move from her chair to the mat table with a slide board today instead of the lift and sling. Not only is this a huge accomplishment for Em, but it means that she gets more actual therapy time because the move is quicker.

Finally, for our friends at St. A's - Dr. Yarnell charmed Emily into blowing him a kiss this afternoon. When it happened I told him I was going to post it on her blog and that ALL of the St. A's nurses would know. It was really very sweet. And afterwards, he gave me a hug instead of just responding (tolerating?) my hugging him.

Emily continues to touch people - she can't speak and there's no way for any of them to know her the way we do, but somehow they do. Somehow her spirit transcends this injury and I have to believe that's a sign.

2007-05-29T19:59:00.000-07:00

After not seeing her for 3 days, Emily's PT and OT were really pleased with how much better she was holding her head and her trunk up today. Her right leg has relaxed so much that the PT was able to get her ankle almost completely flexed with just her hand - something that took me a couple of minutes with my full (considerable) body weight to do just last week.

In Speech Therapy we're having a hard time landing on a consistent way for Em to say yes and no. For everyday questions - are you hungry? do you want to eat in the dining room? would you like to lie down? - thumbs up works really well. I think her speech therapist is having trouble with it when she's doing word recognition/cognitive things. It's frustrating right now for everybody - probably Emily more than anyone.

In Rec Therapy today Emily started a pressed flower candle. She and I will finish it up during her free time this weekend, but it's going to be really pretty when it's finished. We need to pick our Rec Therapy outings for June by this Friday. Unfortunately, Em isn't eligible for the ones she'd really like to try - big thumbs up for hot air balloon and discover scuba. We'll probably start with a few trips to the park.

Emily has her swallow test tomorrow which will determine if she's having difficulty keeping thin liquids, like water, out of her airway. Once those results are in hopefully we can move on from the pureed diet. She wants to feed herself so bad, but the runny, pureed food just makes that so much more difficult. In addition to the kind of soupy foods, her appetite just took off yesterday and she's so hungry by meal time (even with snacks) that she tries to eat too fast and spills even more. I need to meet with the dietician tomorrow and try to get her a larger serving of protein with each meal. If the swallow test results are good, we might also be able to try and have her swallow pills, so the last reason for the G-tube would go away along with, hopefully, the G-tube.

2007-05-28T16:56:00.000-07:00

So I think next year we're all going to do the Bolder Boulder. Hendo wants to run it with Emily next year, and I've decided that's a good goal for Ken and me as well (although given my foot/ankle history I may not run). Maybe we can go to the Kuchenrither's party afterwards and Emily and Dick can compare rehab stories.

Today Emily and I went for a walk with the Rec Therapy staff and some other patients. It was fun but we did learn that Emily's current wheel chair is not suitable for distance. It weighs 83 pounds and pulls to the right - so I got a good workout. After our walk and a little rest, we went to the Memorial Day barbecue - it was really crowded and noisy (and amazingly un-wheel chair friendly), so I'm not sure how much Emily really enjoyed it. She did however seem to enjoy the few bites of watermelon I shared with her out of sight of her nurses.

Emily's control of her left arm keeps getting better and better. The pureed diet makes it tough, but she's really doing a great job of feeding herself. At dinner last night she was not just taking the spoon to her mouth but getting the bites from the bowls. Once during lunch today I couldn't find the spoon, then Hannah pointed out to me that Emily had put it back in the bowl. She's also trying really hard to talk - even Dr. Yarnell noticed it this afternoon. Dr. Yarnell also said again today that he thinks her right eye is going to be just fine, although Dr. Weintraub did mention last week that she'll need some very specific therapy to ensure that her eyes track together. Emily still hasn't beeen able to use her right arm, but her right leg is much looser and she moves it almost every day.

She's had a really annoying cough for the last couple of days. Ken and I think it's her allergies. Her nurse tried a throat spray this afternoon and it seemed to help, but she really didn't like it. Hopefully I can talk them into trying some Claritan tomorrow if it continues.

We're looking forward to getting back into therapy tomorrow. Tonight's shower night and she usually sleeps really well on shower night, so she should be ready to go in the morning.

2007-05-27T10:40:00.000-07:00

Weekends are really, really quiet at Craig. Quite a change from the week day pace. Emily didn't sleep well Friday night, so she was pretty out of sorts all day yesterday. We went over to Therapeutic Recreation for fruit smoothies in the afternoon and then spent some time outside in the garden and that seemed to cheer her up. Hendo visited and Emily got to see pictures of little Janie Lynn. Once she'd had a shower last night she was very relaxed and had a very restful night. Ken went to the hospital for breakfast and called to say she looked good today and was even able to demonstrate how well she can eat on her own for her nurse.

We had our first Craig milestone yesterday - Emily moved out of her room in the constant monitorig corridor. This is a very good sign that they don't anticipate her needing one-on-one care.

An interesting thing happened on Friday afternoon that I didn't process until about 5:00 this morning - Dr. Yarnell came to see Emily. When he comes in he has a very set pattern: he says "Hi Emily," asks her to take his hand (which she always does), and then asks her to give him a thumbs up. On Friday, Emily gave him a thumbs up BEFORE he'd finished asking her to (as in, "Emily can you.." and her thumb goes right up). Maybe I'm reading too much into it, but it seems to me that indicates she obviously recognizes him and remembers what he's going to ask her to do. Since short-term memory is often affected by brain injuries, this seems important to me.

We're looking forward to everyone's visits today and tomorrow. Ariel, we know you'll visit when you're able. One question for Brendan: You wrote a poem for Emily right after the accident. I've let a few close friends read it and they all think I should post it on the blog. Do you have any objection?

2007-05-24T18:53:00.000-07:00

So we had the big conference with our Craig team today. I think it was mostly good news, but I'm frankly still processing everything I heard. Here's what I think I heard, but I may ask Ken to do a separate post if he remembers anything differently.

Emily's recovery is likely to be the reverse of the typical brain injury - her cognitive functions will likely improve much faster than her physical, and we may see significant strides in the cognitive area as her brain continues to heal. She wasn't able to have her MRI this morning (you'd think she'd watched enough "House" episodes to know she needed to lay absolutely still), so it will need to be done next week with an IV sedative. With her brain injury, the MRI will provide much greater detail than the CT Scan - on the CT you can clearly see the injury in the left hemisphere but you only get hints at the injury on the right side. The MRI will also give the doctors a chance to take a better look at her right shoulder and her left hip, both of which may have been hurt in the fall. Her therapy team agreed that they're already seeing cognitive improvements in her ability to follow instructions. There appears to be a small injury to her speech initiation center - so sometimes she needs neuro cues but once given she does very well. When she does start talking her speech will likely be slurred in the beginning. Her ST had her reading words and picking the associated picture today and, while not consistent yet, she was obviously able to read - she was successful well over 50% of the time. In other areas, she can roll herself to either side if asked, right obviously easier than left, and tonight when she saw the harness for the lift she immediately took it and tried to put it behind her and roll.

Other important points from our conference: we'll probably have a very good idea in 6-9 months what, if any, physical limitations she'll have. One really important point - when we were at St. Anthony's we were told that her extended coma didn't bode well for her ultimate prognosis. Dr. Weintraub completely disagreed. With her type of injury, lots of damage to lots of very deep brain circuitry, longer coma periods are not unusual, so there's no negative implications from the 3-weeks she was in a coma. He also made the point, very early in the conference, that we just don't know if the neurological circuits deep in her left hemisphere were badly damaged or just off-set. In either case, this area of the brain in someone this young can have miraculous recoveries.

We're probably looking at a mid-August discharge from Craig with lots and lots of hard work while we're there and out-patient therapy after she's home. The obvious goal will be for her to be able to return to school in the Fall and we'll spend a lot of time trying to determine what kind of assistance she might need to make that happen. Can any of the DSA folks that follow this blog tell me if there's an elevator at school?

Other developments today: I got my "hall pass," so I'm cleared to take her anywhere on the Craig hospital grounds. That means if you visit this weekend and we're not in her room we may be out on the patio enjoying some rays. There's also some interesting activites scheduled in Therapeutic Recreation this weekend - so from 2-3 on Saturday we're likely to be over on the east side making fruit smoothies and at the same time on Sunday watching horse races (no idea, but it's a change of scenery). Friends are welcome.

By the way, Dad got a kiss goodbye when he left after the conference this morning, and I got another goodbye kiss tonight.

2007-05-23T16:45:00.000-07:00

Today Emily's OT focused on daily tasks like getting dressed. She did a great job of working with her OT to get dressed and ready for her day. These were some of the same skills we'd been working on at Kindred, so she'd already washed her face and brushed her teeth - by herself. Her second OT session was in the gym and they worked on sitting up straight using her core and raising her head and holding it up. She did great. The OT also spent some time stretching out her poor right arm and hand.

PT was spent mostly stretching and moving her legs, hips and ankles. Her right ankle is still really tight. The PT told me yesterday that they would be using a standing chair to work more on her ankles because bearing her own weight is the best way to get that right achilles stretched out. One cool thing in PT - Emily gets to run the lift that moves her from her wheel chair to the mat table. I'm sure that gives her a much better sense of control over the whole move process.

In ST the focus was on word recognition - following commands to touch her knee, ear, nose, hair and recognizing pictures based on the word. She's also been working a lot on thumbs up for yes and thumbs down for no. This afternoon her ST had her start making sounds.

Dr. Yarnell visited this afternoon and Emily said "hi." Once again she took his hand and gave him a thumbs up immediately when he asked. She also, finally, stuck out her tongue for (at) him. He's going to discuss reducing or eliminating some of her stimulant drugs with her Craig doc.

We have our conference with Dr. Weintraub tomorrow. It's probably too soon for the therapists to have a clear picture, but this will be his opportunity to tell us what he's seen in the various medical tests that have been done. He stopped by today to tell me not to stress out over this meeting - that it will be a good meeting.

Finally - for those of you who read the whole post - the biggest news of the day. When I was saying goodbye to Emily this afternoon so I could go get Hannah, she gave me a kiss. SHE GAVE ME A KISS!!!!!!! I called Uncle Gary the minute I got in the car and cried all the way to Good Shepherd.