A Cold Day in Strasbourg

Today we met with the master shoemaker, and he put new orthotic insoles into Brandy’s new hightop sneakers.  Now when she walks (a few steps, with a walker) her foot is straight, she stands up straight, and her gait is closer to normal.  Her shoes no longer rub her ankle or the scar on the back of her leg, so they are more comfortable.  Hopefully now she’ll wear them more and more.

After the appointment, we picked up Lynn and Elizabeth at the hotel and went to Strasbourg in the Alsace Region of France.  We saw the beautiful cathedral (it was the tallest building in Europe for over 300 years), and went into lots of souvenir stores.  The old buildings and architecture in Strasbourg were fascinating.  Unfortunately, it was too cold to do too much walking, and it was raining off-and-on which made it more uncomfortable.  Even with the gloomy weather, the drive through the Alsace Region was beautiful.

This evening the girls spent time warming up and relaxing.  No trick-or-treaters here; Halloween is a relatively new thing in Germany and is mostly a party excuse for young adults.  There are more and more kid events, but they don’t involve trick-or-treating (at least not yet).  This would have been our first year in the last 10 where we had trick-or-treaters, since we lived “out in the country” from 1999-2007.  We were looking forward to it.  Brandy was looking forward to the leftover candy!  But, given the circumstances, we’ll take the “treat” that we were given here in Germany!

Both girls are enjoying Germany and France, but both very much want to go home. Only a few more days . . .

Gordy

Rooms, Rooms, and More Rooms

Last night was a bad night.  It was our first night in the new hotel, and we had two rooms across the hall from each other – Brandy in one and Lisa and I in the other.  Unfortunately, we were on the “smoking” floor.  At about 2am, Brandy came over from her room to ours because she couldn’t sleep.  Her foot was bothering her (not RSD pain) and she couldn’t stand the cigarette smell in her room.  Our room didn’t smell as bad, so I switched with her for the rest of the night.  None of us got a good nights sleep. 

This morning we switched rooms to a non-smoking floor.  The good news is that the room doesn’t smell like cigarettes. The bad news is that we’re all in one room.  It’s not really a problem for me, but I snore so it might be a problem for Brandy (Lisa is used to it).  Now we’re just down the hall from Elizabeth and Lynn, just like at the other hotel.

Also this morning we met the Kendrix family.  Kyle is the next coma patient; the plan is for them to meet with Doctor Rohr on Monday and start the coma on Tuesday.  This is Kyle’s second trip through the coma treatment.  The Kendrix family has a blog . . . it is at http://rsd.kyledon.com/.  The second family for the coma treatment will be here sometime this weekend.

We decided to focus on helping the girls recuperate today instead of going sightseeing.  So, our big event outside of the hotel today was doing laundry/going to the Marketplace.

At the hotel, besides switching rooms, we tried out the swimming pool and hot tub.  Another first – Brandy got all the way in the swimming pool and in the hot tub.  She wasn’t just sitting on the edge with her right leg up in the air!  It was wonderful to see!  Brandy and Elizabeth both worked their leg muscles in the pool and enjoyed the hot tub, then called it a night. 

We ordered dinner delivered to the hotel, and spent quite a while talking to the Kenrix family, whose room is right across the hall from ours.  It is amazing how much in common the RSD patients have – not just in symptoms, but in interests and history, too!  We all have become one big family.

Gordy

Moving Day

Today we moved to the other Victor’s Residenz-Hotel in Saarbrucken, in the Rodenhof area.  None of us wanted to move, because the one we were at was a great hotel, with a super staff, in a great location.  The new hotel has a super staff, but the hotel is only so-so, and the location is only pretty good.  Our new hotel is not wheelchair accessible (or even wheelchair friendly).  In addition to steps at all entrances, Elizabeth’s wheelchair will only fit in one of the two elevators, and only then without anyone riding along with her.  The rooms are okay (except we’re on a smoking floor), but we don’t have any kitchen facilities or even a coffee maker.  A benefit is that this hotel has a pool – just what the doctor ordered for the girls.

We finished moving all of our luggage around Noon (or a little after), so we decided to take the girls to Trier this afternoon.  We had planned to go to Strasbourg today and Trier tomorrow, but changed so that we’d have more time in Strasbourg.  It was cold and it rained much of the time we were in Trier, and because of the late start we didn’t get to see everything that the girls wanted to.  Brandy was especially disappointed that we didn’t get to see the Karl Marx house or all of the ancient Roman sites.

Other than being tired, the girls did great today.  Brandy seems to have her appetite back, as she seems to be hungry very often.  That’s a good thing, as little as she weighs!

Gordy

Shopping and Dinner

Today we spent about 3 hours shopping in the St. Johann Marketplace here in Saarbrucken.  Brandy bought a pair of boots and put both of them on.  She can’t wear them yet (until her right foot/ankle gets stronger), but it’s another “first time in seven years.”  We bought some clothes and several Christmas gifts, and ate a late lunch at McDonalds.  (Don’t worry – it was only the 3rd time Brandy has eaten McDonalds since we’ve been here . . . maybe a new record for her!)  Then it was back to the hotel for a nap and packing so we can move to the other hotel tomorrow.  (Brandy corrected this – she didn’t nap, she just rested.  Same with Lynn.  The rest of us napped.)

We went to Ralph’s and Almut’s for dinner and some great company.  We met Bill, Ralph’s tennis coach.  He’s very nice; he is originally from Canada, now living in France.  After a wonderful evening, we returned to the hotel at around midnight. 

So the girls did great today – two big “events” with no problems.  Each day is a little better!

Lisa

An Off Day

Today was cold and rainy, so we really didn’t do anything exciting.  Or at least, we didn’t do anything that we couldn’t do back home in the U.S.A.

This morning Ralph came over and we visited for a while.  After he left, the five of us went to the Designer Outlets at Zweibrucken, about 20 minutes east of Saarbrucken.  There were outlets from throughout Europe and the U.S.  We browsed the stores for a couple of hours, and determined that clothing and shoe quality seems to be better in Germany, but prices are better in the U.S.  We bought a few things, but didn’t make any major purchases.

The girls dozed on the way back to the hotel.  The rest of the afternoon and evening were spent at the hotel, just lounging around.  We cooked dinner in the room, as tomorrow is our last day with a refrigerator.  You see, the economic crisis is bad here, and they are removing all extra appliances from the rooms.  (Just kidding – we have to change hotels on Wednesday morning and we’re eating dinner at Ralph’s and Almut’s house tomorrow night.)

Tomorrow both girls and the parents will pack and move to another Victor’s hotel in the area.  This hotel (with the apartments) was booked for several days starting October 29, so we knew that moving was a possibility depending on how long we needed to stay in Germany.  The next two RSD coma families arrive later this week and will stay at the new hotel also, at least at first.  Poor Ralph – he’s got his hands full assisting four families at once!  But he’s doing a great job, and we’ll try to assist him as much as we can while we’re still here.  We leave next Tuesday.  

Tomorrow the weather should be better, but there is snow in the forecast for later this week . . . same as at home!

Gordy

A Trip to Luxembourg

This morning we said goodbye to our friends from Munich – Tina, her mom, Peer, and Uly.  They were all so much fun to be around, and they brought friendship and laughter (and beer) with them from Bavaria, just to make things easier for Lynn (and consequently us).  We will miss them.

Tina was such a tremendous help to all of us emotionally, but especially for Lynn.  Even though she was called “Tina from Germany” and “Tina the Exchange Student”, she was really Lynn’s “other daughter.”  She was also a big help to Elizabeth and Brandy as they came out of the coma.  She made sure nobody messed with Elizabeth’s (or whomever’s) babies, and she listened when Elizabeth complained about the cruise she was on.  She also made sure Brandy knew how to breathe and that she still had her tongue.  (I guess you had to be there.)  Tina was a lot of fun to be around, and really helped with translation!  She will be a lifelong friend to all of us!

This afternoon we took a ride northwest into the country of Luxembourg.  Luxembourg is about the size of Rhode Island.  On the way, we stopped and visited a reconstructed Roman villa in Borg, Germany.  Some of the site is still being excavated.  It was facinating, especially the bath house.  The displays of artifacts from the 1st, 2nd, and 3rd centuries were amazing!  (www.villa-borg.de)

After a few wrong turns and a short ride through the Luxembourg countryside (and a fill-up with diesel, since it is a lot cheaper there), we returned to the hotel.  We had dinner delivered from a local pizza place called “Happy Food”.  It made my tummy happy!

Both girls were exhausted after our excursion, and we’re having a quiet evening resting in the hotel.  The girls seem to be getting stronger each day, and later this week we hope to take longer trips, including one to the Black Forest, one to Strasbourg France, and one back to Heidelberg.

Gordy

An Uphill Battle (and a Downhill One, Too)

Today was proof that the girls are still recuperating.  Elizabeth had a bad night last night and skipped breakfast.  The rest of us ate together (the wonderful hotel buffet breakfast), and afterwards Brandy had to lay down for a while and rest.  The girls (and parents) spent a couple of hours together talking, while our friends from Munich went out to the Marketplace.  When they returned, we all went to the Saarbrucken Zoo.  It was nice, but the girls (especially Brandy) quickly wore out.  So did we, as the zoo is on a hill and pushing the girls up the hilly trails in their wheelchairs was hard work!  Even holding their chairs back going down the trails was quite an effort!  We had fun, but we couldn’t do the whole zoo.

After resting for a couple of hours, we all went to dinner.  We had a good time, but I had to bring the girls back right after we finished eating because they both were “crashing”.  Luckily, we had 2 cars and were right down the road from the hotel.  The girls laid on our bed and talked while they rested; that was all the energy they had for the day.

A little clarification for those of you who expressed concern over Brandy riding on a motorcycle:  Ralph took her at low speed around his neighborhood for about 2 minutes.  The pleasure it brought her after the seven years of agony was well worth the minor risk it posed.  It was probably less dangerous than pushing her in a wheelchair over the cobblestones at the St. Johann Marketplace where she could get bounced out of her wheelchair, or than flying home too soon where she could get bumped into by any of the hundreds of people at the airports.  Remember, we (the parents) are the ones who are most worried over what the girls do, so relax . . . we’re not going to let them do anything that might get them back into the situation they were in.  We appreciate your concern, of course, but have faith in us.  Of course, we don’t have too much say, as she is an adult!

By the way, Daylight Savings Time ends here tonight, so we’re changing the clocks back 1 hour.  We’ll only be 5 hours earlier now until Daylight Savings Time ends in the U.S.

Gordy

A Big Day

Today was a very busy day – a great day, to say the least.  That is true in spite of the fact that we almost had to take Lisa to the Klinikum Saarbrucken (grin).  One of the photos below will be all of the explanation necessary.

This morning it was cold but sunny, and we went to the St. Johann Marketplace to find Elizabeth some hightop sneakers, as Dr. Rohr ordered.  She found some, and some boots as well.  The girls also needed socks (since that wasn’t something either one had worn much before the treatment), so we went shopping for those also.  That was enough for the morning; the girls were beat.

Ralph called early this afternoon and said that the master shoemaker had called and said that Brandy’s shoes were in.  After Brandy got a 10-minute catnap, we went to the shoemakers and Brandy tried the shoes on.  With support from Ralph and me, she walked about 15 steps in her new shoes – and that was without the special insole!  Lisa cried, and it was hard for me not to.  The shoemaker said that it will be more comfortable for Brandy to walk once he makes the insole for her; it will be ready next Friday.  In the meantime, she can start building up her leg muscles by walking a few steps in her new shoes with her new walker several times a day.

After leaving the shoemakers and having a grilled sausage, we followed Ralph back to his house so he could get his motorcycle and lead us on a nice ride through the “hinterland.”  There was a short delay for a surprise (see below).  The ride through the countryside was beautiful, and we made a couple of stops along the way; once to look at the view, and once to look briefly at an archaeological dig of some Roman ruins.  We drove through a little of France on our way back to Saarbrucken.  We all had a great time.

When we got back to the hotel, Brandy surprized Elizabeth by walking (with her walker) into her room.  Elizabeth’s jaw dropped and almost hit the floor!  She was so excited for Brandy!  We all sat and talked for a couple of hours until Tina, her mom, Peer, and Uly arrived.  It was pretty emotional for them when they saw how great the girls look (especially their legs), and saw them walking.  We all went out to dinner (which was almost too much for the girls), and got back after 11:00pm.  The girls should sleep well tonight, and so should we!

Gordy

Brandy walking with her new orthopedic hightop sneakers. She took about 15 steps - the most in 7 years!

 

Lisa almost had a HEART ATTACK when Ralph took Brandy on a short motorcycle ride around his neighborhood today, just 5 days after she got out of ICU.

Uncomfortable Night, Pretty Good Day

Brandy had an uncomfortable night last night, but she still got more sleep than she had been getting (not counting the coma, of course).  She wasn’t feeling well when she went to bed, but was feeling much better this morning.  Ralph came over and visited for a while, and showed Lisa a trick with hot water and a towel to help Brandy’s kidney area feel better.  It really helped.

Later, we took Brandy and Elizabeth for a walk (in their wheelchairs) around the lake in the park behind the hotel.  It was chilly, but the sun was very bright.  Afterwards, we dropped Brandy off with Elizabeth and Lynn.  They napped and watched a movie while we went to do laundry (I forgot to take pictures again).  I also upgraded our rental car to a larger model – this one has 4 doors, room for 2 wheelchairs, and a very powerful diesel engine!  Our previous 2-door car didn’t have much “get-up-and-go”, and could only fit four people and one wheelchair.  It was fine for us to visit the girls in the hospital, but now that the girls are back with us, we needed something bigger.

This evening we all went to dinner with Ralph at our favorite RSD family hang-out, Pizza per Tutti.  The girls did great.  They both look great – good color, sparkling eyes, and lots of laughter!  These are things we haven’t seen in a long, long time (and the girls still aren’t feeling their best!)  Elizabeth even walked from the restaurant to the car!

Tonight is quiet.  Both girls are tired but feeling okay; all parents are tired and still feeling thrilled that our girls are not in unyielding pain anymore.

There are a few things I would like to clarify or explain:

1. Dr. Rohr really did want the girls to drink beer.  More than one, in fact.  (Unfortunately, Brandy hates beer.  Wait – did I say “unfortunately”?) 

2. The girls have a new problem – separation anxiety.  Not from the parents, but from each other.  They really care about each other and are used to being in the same room.  They really were uncomfortable their first night apart (even though they were in their parents’ room).  Today they spent a lot of time together.

3. Don’t be misled by my saying Brandy can walk.  She can take a few steps, with assistance, a few times a day.  Once she gets her new shoes (so she can walk on the bottom of her foot instead of the side), she’ll be able to build up her muscles and stamina over time.  We’re going to take the doctor’s advice and take it slowly; within a few months, she’ll be walking more and by next summer, she hopes to be close to 100%.

4. I am at a real disadvantage here – it’s Brandy and Lisa, Elizabeth and Lynn, and me.  This weekend Tina and Peer are coming back with Tina’s mom and Uly.  At least there will be a couple of other guys around!  Luckily I have Ralph around for when I need some male bonding!  And, there’s plenty of German beer . . .

Gordy

Elizabeth and Brandy lounging around at the hotel, October 23, 2008.

Elizabeth and Brandy at Pizza per Tutti for dinner, October 23, 2008.

Exhaustion

Even though everybody has told us that Brandy should take it easy, she still managed to overdo it today.  After taking a nice, long shower, she went with Ralph and us to the master shoemaker (specializing in orthopedic shoes) to get sized for an orthotic shoe for her right foot (and, of course, a matching shoe for her left foot).  The shoemaker works with some of Germany’s best athletes, and is supposed to be the best in the business.  He was very gentle with Brandy’s foot, and gave us hints on how to work with her foot to stretch the tendons and help her walk better.  The shoes will be in late this week or early next week, and then they will be specially modified for her.

We then went for ice cream at our favorite place in St. Johann Marketplace.  It was a very pleasant, relaxing time with Ralph.  Then we went to a store on the far side of the marketplace to look for a long pillow for Brandy (like they had in the hospital), and stopped here and there along the way.  The store we went to didn’t have what we were looking for, but suggested a neighboring store.  We had planned to go to that store to look at walkers, anyway.  But, they were closed for lunch, so we went to the coffee/candy store and bought some more, well, coffee and candy.  We went back to the other store and looked at pillows and walkers.  No luck on the pillow (but the salesperson suggested that we roll up a blanket, which worked perfectly).  We did buy a walker for Brandy after she tried it out and took a few steps with it.  By the time we were done there, Brandy said that she’d had enough.  We didn’t realize it, but we’d been out for over 4 hours.

When we got back to the hotel, Brandy collapsed in bed and slept for a couple of hours (as did Lisa).  Brandy felt better afterward, but still not as good as she had in the morning.  Tomorrow we’ll do what Elizabeth smartly did today – stay in the hotel, watch movies, and recuperate!  Tomorrow is Lynn’s and Elizabeth’s day at the marketplace, but they’ll be smarter than we were and not stay out so long.

We ate dinner in the hotel with Lynn and Elizabeth.  It was nice to all be together, but the girls were worn out before the meal was over.  Neither ate much, but both ate more than they had yesterday.  That’s another indication that things are getting better each day.

Gordy