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Page history last edited by Oliver B. Habicht 6 years, 2 months ago

Thank you!!

We are extremely appreciative of your love and support during Amelia's recovery, and for so graciously responding to our explicit requests for help. And we also thank you for your continued support! It's never out of fashion to offer Amelia and her family messages of love, support, and encouragement at our Guestbook, or sending Amelia a card at our house:

 

Amelia B. Habicht

109 Simsbury Dr

Ithaca, NY 14850

 

NOTE: Although our posts on this page are now few and far between, we thought we'd keep this information posted. And don't forget to check out Amelia's more frequent writings on her Twitter and Facebook accounts, linked below!

 

Snapshots of Amelia's recovery journey

 

Our 2009 summer story:

8/13/09 (Thursday)

Last week, Amelia went out to the movies twice. For laughter therapy, we went to see "Funny People". Later in the week we enjoyed dinner with friends at a nice restaurant (Madaline's), and then saw "Food Inc". Then back to the restaurant to have our desserts! (The restaurant had a prix fixe arrangment which included the movie and dessert.)

 

Last Wednesday we visited the Bicycleman in Alfred Station (near Hornell, about 2 hours from our home) and decided on a single-seat recumbent Catrike trike (a "tadpole" design in which one has 2 wheels in front, and one behind). She successfully and totally independently powered it for a mile or two, including a long, slight incline. On one test ride, we thought Amelia was simply getting tired until we discovered she was somehow powering the bike along the road and back again with the brake on- wow! Amelia ordered a dark purple version. And to increase the bike's versatility, we also ordered a BionX electric engine to assist on Ithaca's hills. We can't wait to see how well this combination of tools contributes to Amelia's recovery- and sanity!

 

This week Amelia had pool therapy twice (including today), which included side-stepping and doing lots of things with no leg brace. Also, Amelia had chiropractic care yesterday which totally loosened up her left shoulder- thank you Gerrit! She had acupuncture today, with a follow-up tomorrow. Today Amelia also visited with her colleagues at the Ithaca City School District office- a busy day, indeed.

 

The dinners friends and family have prepared for us have been truly gifts of the heart, and much appreciated! An additional pleasure when schedules allow them to join us in partaking in their creations. This, along with our weekly CSA boxes and Pat's kitchen managment, has kept Amelia and the family eating better than ever. Thanks, everyone!

 

8/1/09 (Saturday)

First full week back home went well. Amelia has been in every room in the house, including the basement. New grab bars and railings installed in key locations. Amelia has had two showers, baked cookies (with help from OT and Pat), and cooked Ramen all by herself. Thanks to Amelia's mobility with a cane and lower-leg brace, she is fortunately not home-bound. This means she will go to outpatient therapy (pool at last?) now rather than the convenient at-home therapies she received during this past week.

 

Not being home-bound means she's been to Dr. and massage appointments, the fabulous Finger Lakes Independence Center, Lowe's, Tops, Target, blueberry picking in Dryden, College Town Beagles and Ithaca Coffee, lunch at Alladins, theater at the Hanger, a movie at the theater with the kids (G-Force), a picnic at Stewart Park with Cornell ResLife colleagues, and visiting the running and triathlon store. She had the good fortune while and-and-about to run into her new boss and another colleague.

 

Amelia, staying in own bedroom, got full doses of kid-snuggles during the week. The kids left today for two week vacation with cousins in Ohio.

 

7/24/09 (Friday)

Homeward bound! Amelia left Spaulding today at 10:45am, with Pat, me, and a very full station wagon with two bikes mounted on top. We arrived to a wonderful dinner party at our house 7 hours later, after two stops. Gretel prepared dinner, brought over with JP, and Tonya, Adam, and Tristan brought over Peter and Cady, and all ten eat dinner. And now we're sitting down to ice cream and fruit pie brought over by Adam and Tonya- yum!

 

7/23/09 (Thursday)

More stair training for the Amelia, Pat, and me today. Also worked to get Amelia down and up from the floor in a controlled manner. Getting in and out of our car went very well, which boded well for going home. And the day ended with Amelia windsurfing on the Charles River!

 

7/22/09 (Wednesday)

Today was "stair bonanza" day. Amelia would first do a half flight of stairs (8 steps) with the therapsist, up and down. Then with Pat, then again with me. Many times each since we each tried various techniques, especially coming down. And then with the railing on the right, and then on the left, facing up the stairs.

 

This morning was Amelia's last session with the Lokomat (robotic legs), which she really enjoyed, per usual. With Pat or me spotting her, Amelia is able to cruise the halls. So today we showcased her walking for Joyce and Anna with a short walk to the shared room next to Amelia's.

 

7/21/09 (Tuesday)

Heidi visited over lunch. Amelia took a ~2.5 hour cognitive assesment by a neuro-psychologist who charges $400 per hour. This assessment will help characterize Amelia's ability to "return to work, drive a car, and operate heavy machinery".

 

Right after dinner, Amelia enjoyed a phone conversation to catch up with Peter and Cady's first full day back in Ithaca.

 

7/20/09 (Monday)

Amelia is off a restricted diet, at last! She can finally eat fresh blueberries and cherries in their natural form. And actual salads! An hour before dinner, Amelia was feeling peckish. So we went to the cafeteria where Amelia enjoyed a plate piled high with melons, cherries, and blueberries.

 

Amelia took a shower in the morning. Then Lokomat (robotic legs) training today, followed by brace-only, weight-assisted treadmill walking practice. And then a long walk through the corridors and elevator, to her room in time for lunch. After lunch, Amelia, Pat, and I enjoyed a game of Rummikub.

 

7/19/09 (Sunday)

Amelia's day of rest. She hates them! She caught up on about a week's worth of Jon Stewart's Daily Show, though.

 

I joined Amelia for lunch after Adam, Tonya, and Tristan picked up Peter and Cady to go back to Ithaca a week before we head back. Joyce joined us for a nice time chatting by the Charles with sun and wind.

 

Today Amelia had originally planned to compete in a half-ironman triathlon, before the stroke. So all morning she thought about the event and her friend, Chris, who did attend. She chatted with Chris after Chris finished (6.5 hours). Understandably a frustrating situation for Amelia.

 

7/18/09 (Saturday)

Amelia, Peter, Cady, Cronie (my mom), and I went via subway to see the new Harry Potter movie. This outing had to be officially cleared through many layers of hospital oversight staff, following insurance stipulations, since we didn't go with any hospital staff. Amelia traveled by wheelchair, and we ran into many challenges that were new to us regarding access. For example, we got off at the station nearest the movie theater, but it didn't have an elevator to bring us to street level. Therefore, we had to re-board with the assistance of a kindly stranger, along with the station master and I, lifting Amelia in her wheelchair back onto a subway car), and we took that car one more stop further along so we could use elevators to get a train going in the reverse direction, all so we could get to the station located before the one we first got off at. Then we had to travel via sidewalk the distance between two stations, to the location of the station that didn't have an elevator. The one in the middle of the "theatre" district. Things like that. (As you may have guessed, we didn't make the opening time we wanted, but fortunately did arrive just as a later show was to start.) This excursion further developed our capabilities in dealing with Amelia's mobility limitations and increased the awareness of the considerations Amelia, Cronie, and I must learn and focus on with specialists during Amelia's final week here at Spaulding.

 

The movie showing we did make nominally started at 11:30am (closer to an actual noon start due to previews and ads, of course), so we snagged a small bite to eat afterwards from a hotdog and pretzel stand in the Boston Common, right across the movie theater, at about 2:45. Then the subway back to the hospital in less than half the time it took us to go outbound. :-) Amelia ate the lunch waiting for her in her room, and although well past her 2:30pm(!) PT appointment, the therapist was still able to fit Amelia in for a partial session involving more walking, which reportedly went well. Amelia wore her new leg brace since 7am, and it was still OK comfort-wise through the afternoon, which surprised the PT therapist since most patients don't adapt as quickly to their new braces.

 

7/17/09 (Friday) 

Adam's entry for the day:

Amelia's dessert report for the day is that the vanilla ice cream and chocolate cake at dinner was pretty good but the strawberry sundae for lunch was awful... (And Oliver has just returned after scoring yet another two desserts for her!)

 

Tonya and Tristan and I stopped by during Amelia's lunch to chat for a while before she was slated to head off for windsurfing, but alas, when we returned a few hours later from visiting the USS Constitution, she said that there hadn't been enough wind and they'd had to go kayaking instead.

 

We also were able to bring a pair of Amelia's slip-on Merrell-like shoes, which should be easier for her to get on and off by herself than lace-up running shoes when she needs to go to the bathroom.

 

7/15/09 (Wednesday)

Tonya, Peter, Cady, and I joined Amelia and a group of her cohorts at the Franklin Zoo for much of the afternoon. Stellar weather, and plenty to see. We caught up with Amelia later for her dinner. Joyce also stopped by briefly with Swiss truffles from Teuscher, which Amelia has really been craving after sampling them last month.

 

Amelia reports that her left lower leg hurt very much this morning. The PT says this is commonly reported by patients who are regaining sensation and use of a limb. Amelia reports that it feels fine this evening, after six truffles. :-)

 

7/14/09 (Tuesday)

Amelia's first ride on an outdoor bike since the stroke! She was in a recumbent, tandem trike. Heidi and I (Oliver) tagged along on our own individual single-person trikes and we all cycled up Boston's Charles River Esplanade quite a ways before returning back to Spaulding. Wonderful temperture, and the sun felt great.

 

Amelia's two sessions of PT included more squats- Amelia likes them because although they hurt, she knows they're good for her! She also got more practice walking with a cane while standing tall.

 

I brought in five different New Balance shoes for Amelia to try out with her new brace fitting this coming Thursday. Hopefully one will work out, but if not we'll simply keep trying more shoes. It's a relatively easy process to iterate since the New Balance factory outlet store is on my daily commute, and that's where Spaulding recommends patients get their shoes for use with a brace.

 

7/13/09 (Monday)

Tonya's entry for the day:

Monday was sunny with great views from Spaulding over the Charles River and the train yard at North Station, but my focus was on Amelia. She had various "classes" and lunch in the morning - a baffling array of acronyms that she and Oliver have sorted, but it's alphabet soup to me. I saw her after lunch so the visit started with a big hug and some tears, but we couldn't touch base right away because it was time for Amelia's Lokomat class, which there is a video of and other discussion of elsewhere on this Web page. The device is amazing. Amelia walks sort of normally with her right leg while she tries to walk with her left leg and a machine makes her left leg move the way her right leg does. She gets computer feedback on how her left leg is moving, and she was often slightly moving the line that indicated what her left leg was doing. She also could look in a mirror to see how her legs were working. She said it was hard work, and it made her thirsty. The technicians waved us away a bit because we kept chatting and it was distracting to Amelia while she had her workout. Amelia then played a card game, which I'm not sure exactly what the point of it was, but she was annoyed at the therapists (or whatever their title was) because they didn't let her try her own strategy enough. The point could have been to work on sequencing skills or to work on manipulating cards with one hand (?). I missed some of the game because I had to get lunch.

 

After that we finally got to visit. It was so wonderful to talk to Amelia, who was entirely lucid and we had a good gripe session about how the entire situation stinks. It takes Oliver a generous hour to pick the kids up from camp, so he and the kids came back at some point, and I was so impressed with how Peter was able to go to the cafeteria all by himself with a $20 bill and come back with correct change plus two yogurts.

 

The four of them, Oliver and Amelia and Peter and Cady are doing well under difficult circumstances, but my take-away for folks home in Ithaca is that any help we can provide as they return home will be not just be welcomed but also be necessary. Helping someone who had a stroke with the mechanics of getting through the day is very time-consuming (so Oliver will have a full plate) and recovering from a stroke is a huge challenge.

 

7/12/09 (Sunday)

The RA's (resident advisers) from TR tried to gather a room full of patients to play Apples-to-Apples, and Amelia was the only one who went. Amelia enjoyed the game, and beat both therapists!

 

Joyce visited with Amelia in the early afternoon, and they chatted.

 

Amelia followed her dinner by having pizza from Figs with Joyce, Anna, Tom, Peter, Cady, and me outside on the cafeteria's windy, sun-soaked patio.

 

7/11/09 (Saturday)

Amelia taste-compared cannoli's from two well-known pastry shops in Boston's North End (Lil' Italy), Mike's Pastry and Modern Pastry. She slightly favored the ones from Modern.

 

Amelia, Anna, Peter, Cady, and I were visited by Audrey (a connection through Amelia's friend, Skipper, in Oregon) who has a pet-therapy dog that was HUGE- a Leonberger named Mishka (bear, in Russian). We enjoyed spending time with Mishka, in the sun, as the Charles River flowed by. To give you an idea of Mishka's size, Leonberger's were, according to legend at least, bred to resemble lions!

 

Following that, Anna, Cady, and Oliver shared in Amelia's OT group and enjoyed the challenges and games as usual.

 

7/10/09 (Fri)

Amelia did more walking today, this time with a knee-to-toe brace, and a cane with a four-legged bottom. TR showed Amelia that Greek Peak (local Ithaca ski resort) has adaptive ski lessons. This was Amelia's first day using an adaptive, stationary bike, used while sitting in her wheel chair.

 

She's now up to four goals per day: Brush her own teeth and hair. Cry as much as she wants. Eat everything in sight, and subsequently expend every calorie! And make each therapist in a day laugh at least once, with at least one solid wise-crack per day!

 

7/9/09 (Thur)

Amelia thoroughly enjoyed boating on the Charles today, with the Adaptive Sports program. In the outrigger canoe, Amelia's left hand was wrapped to the top of a canoe paddle so she was able to paddle with "power and might" with her right hand. In the sailboat, she used a steering wheel, with a brodie knob, to control the rudder. And in the power boat, she simply sat on the front bench looking stylish in her Batman sunglasses, getting wind-swept hair and a light tan like a model in the closing scene to a heartfelt, character-driven drama.

 

7/8/09 (Wed)

Amelia practiced walking backwards and forwards again, in PT. When she yawns, her left arm moves reflexively. She is now able to use her hip flexors to lift her left leg. Amelia reports that Pilates class has been the most useful experience to tap into so for in her recovery regimen.

 

7/7/09 (Tue) 

Heidi's entry for the day:

Amelia has the thrill of more robot therapy this AM, "the coolest thing I've done all summer".  Joyce,  Oliver and I are there to witness her third marathon on this amazing contraption after watching her get strapped in, complete with a corsette, and Amelia comes prepared in her biking shorts. When instucted to kick forward with her left leg, Joyce adds, "Think, think, think!".  Amelia remarks, "I am trying but I've gone wireless and the connection is spotty."  After the 25 minutes as Robot Woman she looks happily tired, "That was a good work out."  Now she's off to play Super Scrabble and for puppy therapy.  Her days are full of all different types of therapy and Amelia is especially looking forward to paddling on the Charles in two days so we're hoping for a sunny day.  She is much more alert and talkative than when I first visited two weeks ago during her first full day of rehab, and even compared to my two visits last week.  And today she reports she is starting to get feeling back in her left leg, which is slightly uncomfortable like when your limb has been asleep, but a good sign!  Her spirits seem good and as always she is motivated to get better.

 

7/6/09 (Mon)

Jean's entry for the day:

Amelia continues to improve.  PT this am had her walk backwards, a step in the right direction! Also more robot therapy which she looks forward to (more tomorrow). As they were setting up and strapping her in with velcro and padding, and she is swinging in the harness a few inches above the treadmill, she asks "Does this make my ass look big?" We all cracked up including Amelia. I also shared Amelia's childhood nickname with her therapist, I bet not many of you know it. It doesn't really suit her grown-up personality.  All in all a good day at Spaulding.

 

7/5/09 (Sun)

No therapy for Amelia today, being a Sunday. Which for Amelia means trying to stay out of trouble! :-) It was another gloriously bright day, which for Peter, Cady, Anna, Tom, and I (Oliver) meant enjoying a long bike ride, along which included lots of time at three playgrounds, and well-earned ice-creams as "lunch".

 

Joyce and Jean visited Amelia in the late morning, and spend time outside along the Charles. Peter, Cady, Anna, and I joined them later on in time for Amelia's dinner. This time Amelia herself got to eat dinner while being outside. Back in her room, I help Amelia lay down on her stomach in bed, and the change in position is welcome. For thirty minutes or so, and then back to her back, all the while with both kids snuggling on and next to her.

 

7/4/09 (Sat)

Finally a full, "real" sunny day! Peter, Cady, and I (Oliver) join Amelia for group OT, which the kids especially like. I attend Amelia's PT, which today included a step block- getting off was harder than getting on! As Amelia holds a rail with her right hand, the PT ensurse her left leg is positioned correctly as Amelia shifts her weight to it and moves a bit forward. As Amelia gains trust in the left leg which she can't fully feel or control, she is able to stand straighter and taller- keys to moving more fluidly. Being Saturday, a light therapy schedule.

 

After Amelia's dinner, she joins Oliver, Peter, and Cady for their later dinner outside, on the terrace of the hospital's cafeteria. We await the arrival of the rest of the clan, and we all stay up late to watch the Boston fireworks from the 9th floor before taking the train back home. 

 

7/3/09 (Fri)

Joyce's entry for the day:

Amelia's 43rd birthday today!  All the balloons, cards and gifts helped to brighten things up.  Keep the cards coming - her closet door is covered with all your good wishes and thoughtfulness.  Amelia celebrated her birthday with a home cooked meal (made by sis Jean), her favorite birthday cake (made by Oliver) and the company of Oliver, Peter, Cady, Anna, Tom, Ellis, Jean and me.  We all went outside in between dinner and cake to enjoy the evening sunshine.

 

7/2/09 (Thur)

Joyce's entry for the day:

Amelia's good friend and running partner, Linnie, visited today in the morning. This was great because they had a chance to catch up on Ithaca news and to talk about running, biking and swimming.  Amelia also had an ultrasound on both legs to see if anything was amiss - but seems that everything looked good.  The rest of her day was 6+ hours of various therapies and afternoon visiting with Oliver, Cady, Peter and her big sis Jean. 

 

7/1/09 (Wed)

Jean's entry for the day:

Only two days until Amelia's B-day!  We have big plans, she has requested black beans and rice, pineapple upside down cake, and a beer!  Hopefully we can fulfill her wishes.  Spaulding is keeping her busy, different types of therapy scheduled for most of the day tomorrow.  Amelia is determined to work hard so she can be home ASAP.  She is looking forward to all those little things about home that we tend to take for granted.  Friends, fireflies, fresh garden blooms, and decent home cooked food!

 

6/30/09 (Tues)

Laura's entry for the day:

Amelia is happy to hear she may be moving off soft/bland food diet restrictions soon.

She made yummy brownies as part of occupational therapy. Amelia, Oliver, Laura and Oliver's sister Heidi enjoyed the brownies after lunch. There are more brownies if anyone wants to come visit.

 

6/29/09 (Mon)

Laura's entry for the day:

Amelia had a packed day, full of therapy sessions and visitors. The big event for the day was 30-minutes on a treadmill, held up by harnesses connected to the ceiling and lots of high-tech equipment strapped to Amelia's legs. (Pictures and movies available!) She said she felt like a bionic woman! Amelia said it was the coolest, highest-tech thing she had done all summer.

Peter and Cady visited Amelia in the afternoon and evening, with a trip to the Science Center in between with Aunt Jean.

 

6/28/09 (Sun), 7:15pm

Laura's entry for the day:

Peter and Oliver meet up with Jean and me at Amelia's. Spaulding doesn't do therapy on Sundays so Amelia did "sister therapy." Jean and I took Amelia to the PT gym and ran her through several sets of leg lifts, leg pushes, abduction and adduction exercises as well as shoulder work. Her muscles were sore by the end. Amazing news: Amelia can lift her left leg 12 inches!!

She also enjoyed another stroll-and-roll along the Charles River, and a visit from an old high school friend, Dave.

Peter cuddled with Mom for a late afternoon nap.

Amelia still has a long way to go but the progress is encouraging. Keep the cards and e-mails coming!!

 

6/27/09 (Sat)

Laura's entry for the day:

Amelia enjoys visits by three of her sisters, Joyce, Jean (who arrived in the afternoon from Michigan), and me . We escort Amelia, via wheel chair, to the outside for the first time since she's been hospitalized. It was a beautiful day for a stroll and roll along the Charles River. Amelia played two games of balloon volleyball -- one with Joyce and me, and another with Peter and Cady.

 

6/26/09 (Fri), 10:25pm

Ithaca friend Karen visited Amelia during PT and lunch today. Karen kindly bringing our dog Indy back to Ithaca after this weekend, after Karen travels to Maine. Karen brough loads of cards from Ithaca wishing Amelia well- very touching! Kids, Anna, and I joined Amelia in the late afternoon, and left shortly after her dinner. Good sign that Amelia needed more clean clothes!

 

The hospital's weekend schedules are a bit lighter, apparently. For Saturday, here is what looked to be scheduled for Amelia: 7am breakfast group; 11AM PT; and 1PM OT weekend group. Karen may swing by sometime in the morning on her way to Maine.

 

Amelia's sister, Laura, arrives tonight from Ohio, and staying staying for a few days. So, lots of fun ahead!

 

6/25/09 (Thur), 11:55pm

Kids, Tom, and I joined Amelia for her PT today. Amelia notes just how much balloon volleyball, which she does sitting up with mild support, results in a Pilates-type "core" workout!

 

We then joined Amelia for lunch, and we all enjoyed a fabulous fruit "flower" basket gift from one of Amelia's work colleague. Following that, kids, Tom, and I walked over to the splendid Science Museum nearby until their 5pm closing time. Back for a snack of donuts with Amelia, and we then left just after 7pm.

 

Amelia continuing to be very positive. Always the planner, she has set her sights on the Lake Placid (full) Ironman, July 26, 2016- when she's 50. One can only remark, Go Amelia! In the shorter term, she'd like to be able to cheer Cady (and me) on at the Musselman <http://www.musselmantri.com/> (Seneca Lake) triathlons which the three of us had registered for; dorm suite for the four of us reserved July 17th-19th. We'll just have to see how things progress.

 

Tomorrow's scheduled sessions changing around yet again, but still very full, especially considering her energy levels and concentration (both of which continue to improve every day): 10am OT with a group; 11am PT; 12 lunch with SLP; and 3pm TR (1/2 hour).

 

6/24/09 (Wed), 11:45pm

Kids and I visited with Amelia this afternoon, and found her doing very well. She was so glad to have had a good shower. And I'm sure Pilates during PT (physical therepy) helped, too! For tomorrow, a full menu of acryonyms are lined up on her activity board: TR (Theapeutic recreation), 9am; GRP ("group") at 10am, which Amelia may skip; PT at 11am (though it was at 1pm today, so we're uncertain about timing); SLP (speach/ language pathology) at 2pm; and OT (occupational therapy) at 3pm. A full day, indeed!

 

Cady, Anna (niece), and I scouted the train station near Anna's house, and Peter and I scouted the train station right next door to Amelia's hospital today. I hope to try that way of getting in tomorrow, hopefully in time to join Amelia during PT, to which she has invited all of us. Can't wait!

 

6/23/09 (Tues), 11:10pm

Amelia is again visited by Penny and her girls in the morning. Overlapping with a visit from Heidi (my sister) visiting from Rhode Island. And Peter, Cady, and I overlapped only a little bit with Heidi, since we were running ~1.5 hours late. Combined with 3 hours of rehab in the morning, a full, full day for Amelia!

 

Amelia's rehab schedule is set for this week, 9-noon. Each day, one hour each, speach therapy (swallowing and such), occupational therapy (dressing, moving around, etc.), and physical therapy (muscle and range of motion work, and related). Lots of work ahead, for sure, and Amelia is clearly ready for it.

 

Thanks to the coordination and efforts of Adam, Tonya, Karen, and Erin, we received some much-welcomed supplies from Ithaca, including our laptop with which Amelia immediately put to use.

 

6/22/09 (Mon), 4:15pm

Amelia is now settled into Spaulding, and the address above has been updated. Keep those cards, etc. coming, especially now that we don't expect to have to move them until we head back to Ithaca! Penny (sister-in-law) coming to visit shortly. All seems to be settling well for now.

 

6/22/09 (Mon), 1:50pm

Amelia can raise her left leg about two inches! Obviously a very good and important achievement. Rehab today included "walking", using an ankle brace on her left leg and a running shoe on her right foot. And we got news that she will move to Spaulding today rather than tomorrow. She's expected to move around 2:30.

 

I'll be meeting up with some of our Ithaca belongings in a day or two thanks to Erin who is on her way to Foxborough, using Karen's car. Includes our family's laptop, with which Amelia can start updating people directly.

 

6/21/09 (Sun), 11:15pm

Amelia really wants to get started with rehab, not surprisingly. I brought her running shoes today since she is hoping that some standing-related rehab might start tomorrow (Monday), even while she's at the hospital. Logistic issues (no bed currently available) at the rehap center, Spaulding (Boston), means a likely transfer on Tuesday, not Monday as originally hoped. Joyce (Amelia's "Boston" sister, and with whose family I'm staying with in Weston) visited with her older children, Tom and Anna, during Amelia's lunch. And Peter, Cady, and I visited Amelia later in the afternoon, and over her dinner. Amelia had wisely ordered extra dessert portions since our kids enjoyed snacking on her dinner desserts before we headed back "home" for our own dinners. And now they know they love tapioca pudding.

 

Amelia seems better each day- she feels really ready to move on and out of the hospital! All leads are now off her chest (no more noisy heart monitor!), and no IVs. Still must endure the heat associated with a pair of "auto-inflating/ deflating pants" due to her being bed-bound for most of the day (tool serves to prevent leg clots). Her appetite is strong, and swallowing seems to be a non-issue now. She was pleased with our delivery of diet Pepsi since her floor seems deprived of that particular beverage. Her roommate was transfered out so for now she has very spacious and private accomodations.

 

6/20/09 (Sat), 11:50pm

Amelia took a shower this morning, including a proper shampooing. Amelia reports how nice it was to have done this after having laid in bed for so many days! This milestone involved her getting onto a chair that rolls right into a shower room, and at this stage having lots of help. She still has basically no sensation (except to pain) or movement on much of her left side. That includes her left leg and arm, and much of her face, for example.

 

Peter and Cady are "back" from their extended vacation in Maine with Chris, my brother from Alaska. The three of them came by bus via Portland, Maine, arriving in the late afternoon, so kids went directly to visit with Amelia and me. We were understandably pleased to see them after so much time apart! They both got to snuggle with Mom in bed- sweet! I took Peter and Cady on a long tour of a small portion of the hospital, including getting snacks at the cafetaria which we brought up to join Mom for dinner. Afterwards we played Rummicube, and then left Mom blissfully exhausted. :-)

 

6/19/09 (Fri), 7:20pm

Amelia has just finished dinner (having skipped lunch), following another CT scan. She will remain in her current room through the weekend so she can be monitored. Doctors are mainly concerned with cerebral edema at this point (which I gather isn't particularly likely, thankfully). Then hopefully on to rehab on Monday or so.

 

Thanks to friends Adam and Tonya Engst, we now have a concrete way to express our needs for the longer-term and track and coordinate them. Take a look in the above "What you can do today" section for more info. And thank you, all, for your continued support.

 

6/19/09 (Fri), 1:20pm

Amelia writes: am esring my own undies &diting up in a chsir today so Ifeel "normslsgdin" . Oliver here again. Amelia is typing one-handed, looking at very small type! [Am using my own undies and sitting up in a chair today so I feel "normal" again.] Enjoy the post- I know everyone wanted to "hear" directly from Amelia. :-)

 

6/18/09 (Thur), 2:20pm

Amelia moved to the non-ICU portion of Mass General Hospital's Neuros care, just down the hall from the ICU, at ~9:30pm last night. She shares a room with another patient. Amelia's bed has a lovely cityscape view, which was particularly striking at night. Mornings she's still very sleepy, but when awake she is very much "all there" which has been of great practical help to me. :-)

 

Peter and Cady are being well taken care of by my brother (visiting from Alaska), father, and step-mother,and they continue to enjoy their time with their Alaskan cousins. They're all still at our "Camp Kemah" in Maine (Lake Kezar, near Lovell), and will be traveling down this coming weekend. I'm staying at Amelia's sister's house in Weston, which is an "easy" drive into downtown Boston/ MGH. I've been getting great support from all quarters- lovely! And once Peter and Cady are here, they'll be continuing their summer fun with their two older Bostonian cousins, along with visting mom and being with dad. And there is much for them to enjoy doing right here in Boston, of course.

 

6/17/09 (Wed), 4:45pm

Amelia is in Mass General Hospital's Neuro ICU (Blake, 12th floor), and is very alert. She has been cleared to leave the ICU since she no longer needs intensive care- yeah! She'll move when the new place she's moving to ( White, also 12th floor, Rm 1214B) has a bed. At the new place she can have flowers (not allowed in her current ICU). And she'll also have access to a phone (which I don't have convenient access to in her room, unlike the last ICU we were at). She had a CT scan today. The MRI's from yesterday are just fine for the doctors to use, so that didn't need to be repeated when she arrived.

 

At a practical level, I have Indy (our 13 year old dog) at a home business that boards dogs right in their house, which is conveniently located near Amelia's sister's house in Weston (where I'll be staying).

 

6/16/09 (Tues), 2:30pm

Amelia is being flown to Mass General Hospital's ICU this afternoon (shortly, I gather). She has appreciated all the flowers, cards, and accompanying well wishes so wanted to let you all know that we're moving soon!

 

6/15/09 (Mon), 10:30pm

Amelia is doing much better today. She can swallow, which means she can finally eat "real" food. And her first choices were pancakes (lunch), angel food cake (dinner), all with Pepsi. Swollowing allows her to get weaned off of a drip med. by using an oral drug for the blood thining instead, which will make transport and everything else easier.

 

Amelia was a lot more awake today, for longer periods of time. She had several good, long, interactive calls with family members, as well as with her supervisor at work, who was extremely supportive. Amelia erroneously thought she had moved her left arm to uncover her pancakes when in fact her mind was playing tricks on her. Now that's frustrating!

 

Current plan:

  • Transfer to Spaulding (Boston) for acute rehab and access right across the street to Mass General Hospital's Stroke Service's neurology and stroke consultation services, including second opinions. We have great family support in Boston with her sister Joyce and her family (Weston, MA).
  • Later on (when?), move back to Ithaca for continued rehab at Cayuga Medical Center (or Elmira's St. Joseph's Hospital?). A trusted colleague at work gave a very positive review of CMC's capabilities for stroke rehab, which was very heartening.

 

6/14/09 (Sun), 7:45am

Amelia had a stroke, now hospitalized.

Amelia had a significant stroke this weekend, starting Friday afternoon. No clear reason why, especially considering her age, health, and life-style [and no family history]. Much of her right carthursdaysstery is blocked, and she currently has little-to-no-feeling on much of her left side, nor can she move either her left arm or leg. Her mouth is affected too such that she's not being given anything orally. When awake (which is only with great effort) she is aware and engaged, often communicating with right-hand hand squeezes and slurred speech. It's been a very scary and upsetting situation, and we're all hoping for the best, of course.

 

She's currently in Lewiston, Maine (as am I), at Central Maine Medical Center (CMMC), which is about 1.5 hours from our place near Lovell, ME. She's been receiving excellent care. I have very good support here from multiple visiting family, but the next several months are likely to be understandably difficult for all of us. We'll know more in the days ahead, include where Amelia may be transferred to. Current ideas include Boston's Mass General or Beth Israel (family in Boston), or somewhere more local to Ithaca, such as Syracuse, or Sayre, or maybe Strong (Rochester).

 

If you can recommend a stroke specialist or particular stroke care center, please contact my Dad (Jean-Pierre) at our camp, 207-925-1055. (Cell phones don't work there, so this is a land-line and thus leave a message if no one is around to pick up.)

 

Email is not a good way for me to get information right now, so please be judicious in its use to get in touch with me in the short-term. Thank you.

 

I know Amelia and I, and our children, will benefit from your emotional and practical support in the months ahead. We're very fortunate with the direct "practical" support we have lined up for the next week or so with family we have right here, but as we go forwards your willingness to lend a hand and otherwise be supportive will be very much appreciated. At the moment, it's all a bit much to figure out more specifically what might be needed, but I know that with your support and caring we'll get through the most difficult parts of this.

 

I know there are many people who would want this news that I've inadvertently neglected to send this note to, including many of Amelia's friends. Please do us the favor to get this initial word out to those who would want to know. I intend to put updates here for now:

 

http://habicht.pbworks.com/stroke

 

Peace,

 

-Oliver.

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