Gayle's Notes
http://blog.tracysrsdstory.com
Gayle's Notes

HOUR-LONG RSD INFORMATIONAL PROGRAM ON SATELLITE RADIO!! HEAR DR. SCHWARTZMAN SPEAK!! AND TRACY!! AND LINDSAY!!


RSD AWARENESS ALERT!!!!!!!!!
TUNE IN TOMORROW, TUESDAY OCTOBER 6th, 2009 AT 8 AM!!!
Hour-long medical information program on RSD!
Hear Tracy speak on DoctorRadio.



Dr. Robert J. Schwartzman, internationally known and probably the formost expert on RSD research and treatment (Chair of Neurology, Hahnemann Hospital/Drexel Univ. School of Medicine) will be discussing RSD (Reflex Sympathetic Dystrophy) & answering questions.

Tuesday morning, October 6th from 8-9 am on the
DoctorRadio channels - XM 119 and Sirius 114 - Dr. Kimberly DiOre hosting.



If ...<< MORE >>

Posted by Gayle at 10/5/2009 8:26 PM | Add Comment

GOOD NEWS AND BAD NEWS . . . .

I knew it was a long time since I updated, but I cannot believe it's been SIX MONTHS!!! 

Before I go any further, let me tell you about Tracy. No words are adequate for our gratitude to Dr. Schwartzman et al.   She's back to work (after the summer off) as a 3rd/4th grade Special Education Resource Teacher (same school) in Montgomery County, MD. loves her "kids", loves her school,  and is doing great!  This morning, like so many others, she went out running/power walking with her dog. She runs/walks for over an hour each time. She also ...<< MORE >>
Posted by Gayle at 9/5/2009 9:30 PM | Add Comment

March 28 Dinner cancelled . . . YOUR HELP IS DESPERATELY NEEDED!

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Posted by Gayle at 3/4/2009 9:50 PM | Add Comment

CELEBRATION FOR US . . . . AND PRAYERS FOR SO MANY OTHERS

We've had milestones to celebrate in our family.  Carly celebrated her 30th with a great surprise party, organized by Tracy.   Never could she have done that a year ago!!!   And unbeknownst to her, Tracy had a surprise cake at the party.  Carly's party was on October 17th (before her actual BD) and this was the first anniversary of Tracy's going into the coma.  October 31st, Halloween, marked the date she truly awakened after her coma, so we are thrilled to say, TRACY HAS PASSED THE ONE YEAR MARK!!! This is a very ...<< MORE >>
Posted by Gayle at 11/2/2008 8:20 PM | View Comments (2) | Add Comment

Update . . . . SAVE THIS DATE - MARCH 28, 2009 - The coma cannot be the only answer!!

And again, where does the time go? As we just celebrated the Jewish New Year, Rosh Hashana, I am so aware of a most significant Year that has almost passed -Tracy's first full year anniversary since she awakened from the ketamine coma in Germany pain-free. (see my October 17-31, 2007 updates).   She continues to be doing fabulously and for that we are so very grateful. She's coming up on a major milestone in her remission/recovery. And we could not be more grateful. Every day we thank G-d for our gift, but are still being ever so mindful of ...<< MORE >>
Posted by Gayle at 10/1/2008 9:34 PM | View Comments (1) | Add Comment

So much news on the RSD patient front . . . .

And again, I am beginning with an apology. Thank you to all of you who continue to ask about our daughter, Tracy. Patients coming into our office continue to smile at our response as we tell them, Thank G-d, she is doing amazingly well!! And those who meet her cannot believe she was EVER so sick!   And yes, she does have her life back. She's happier than I've seen her in so many years, and why not?   The agony is but a nagging memory which gives her a true appreciation of her life today.  She's gotten a fabulous teaching job (as a resource teacher ...<< MORE >>
Posted by Gayle at 8/3/2008 9:20 PM | View Comments (2) | Add Comment

And every day, we thank you G-d, Drs. Schwartzman, Rohr and Dr. Rosenberg . . .

Tracy is doing so very well!  She still tires easily, but her life is also now so busy with having returned to full-time teaching. Her energy is zapped by the evening, and she knows the true meaning of TGIF!  But she is energized with the thoughts of her new teaching position for 2008-09! She was offered both positions she interviewed for  this week - a regular third grade class in a wonderful school not too far from her home in Bethesda, and one as a "Resource" teacher (still enabling her to remain in special ed which she loves) which she accepted. In ...<< MORE >>

Posted by Gayle at 5/25/2008 8:27 PM | Add Comment

SWEET SUCCESS!! AND THANKS TO ALL WHO PARTICIPATED IN STRIKE RSD!

All week, I've been meaning to send out a note thanking all who participated in making Strike RSD such a successful jumpstart to our Foundation efforts in helping fund Dr. Schwartzman's research for a cure for RSD!  He is working tirelessly toward that end, and we are hoping to make his and our dream a reality. We were so incredibly pleased with not only the financial end results of our first Strike RSD! Fundraiser (which, bottom line, is why we do it, but with the fun that was had!  We received so many calls and e-mails from people telling us how much ...<< MORE >>
Posted by Gayle at 5/8/2008 10:22 PM | Add Comment

PROTOCOL COMPLETED!!!!!

BEFORE I BEGIN THIS UPDATE about Tracy  . . .

SOMETHING VERY IMPORTANT!  RSD RESEARCH DESPERATELY NEEDS YOUR SUPPORT!! 
PLEASE JOIN US FOR our very first event!!

STRIKE RSD!  
Sunday, May 4th at 5:00 PM
at Bowlmor in Manhattan.
The RSVP deadline has been extended.
Call to get tickets.
Credit cards accepted by phone now. (215) 953-1730

BOWLING, SHOES, OPEN BAR, AND DINNER ALL INCLUDED!!!
FABULOUS AND FUN OPPORTUNITIES FOR SILENT AUCTION!! 

TICKETS ARE $125 PER ADULT, $50 PER CHILD

SPONSORSHP OPPORTUNITIES AVAILABLE IN ADDITION TO TICKETS OR IF YOU ...<< MORE >>
Posted by Gayle at 4/23/2008 7:15 PM | Add Comment

And two more young people have regained their lives!! Join us on May 4th as we help STRIKE RSD!!!!!!

Sorry it's taken me so long to update. Anyone who's sent me direct e-mail I've answered I believe.   I know that there are a couple from people with RSD who are awaiting answers. My responses to you will take more time, and I will get to them this weekend. Please know I haven't forgotten you; I never want to rush answers that really need thought.  I just said to Rick tonight, I cannot believe how fast the days go by - I know that because it seems I just filled our 7-day vitamin containers and they're almost empty. Hard to keep up with ...<< MORE >>
Posted by Gayle at 3/21/2008 9:43 PM | Add Comment

PRAYERS AND POSITIVE ENERGY NEEDED . . . . SO MANY WAYS TO HELP . . . .

Two young people at the Klinikum Saarbruecken's IntensivStation  are now sound asleep in their comas, and hopefully reacting positively to the Ketamine.  However, there are again complications brewing, and the docs are working to get everything under control.   Both Kyle and Margo need all of our prayers and positive energy.  Please think of the them regularly through the next days and ask G-d to help them get through this nerve "re-booting" coma, as you prayed and sent your positive to the Klinikum Saarbruecken for Tracy and Judy. And when you do go on Kyle's site, take leave a "comment" note for all ...<< MORE >>
Posted by Gayle at 2/29/2008 9:07 PM | Add Comment

And the beat goes on . . . Two new young people arrived/awaiting Ketamine coma protocol in Germany. May they do as well as Tracy.

I had a special birthday this weekend. And what made it most special was that both our daughters were here with us and that Tracy was able to fully participate in everything we did. She drove up to our home in Bucks County from Maryland on Thursday - 160+ miles - fully on her own, with only Donny as a travel companion.It was the best weekend, relaxing and celebrating with both our girls - and for the first time in many years, Tracy was able to fully participate. She remains free of any RSD pain, and we cannot describe how happy we are just ...<< MORE >>
Posted by Gayle at 2/24/2008 8:37 PM | Add Comment

And today, I cried . . .

It's now late Saturday night, February 2, 2008, progressing quickly into Sunday morning.

I have had calls from the mothers of the next two advanced RSD patients who are being sent to Germany. They are scheduled to begin their experimental ketamine coma protocol later in February, and are busy making arrangements now to go. One is a 28 year old young man, the other a 16 year old girl, both anxiously and desperately awaiting treatment, encouraged by Tracy's results. I've spoken to both mothers at length and referred them to this site for our in-depth information and the telling ...<< MORE >>

Posted by Gayle at 2/2/2008 11:38 PM | Add Comment

Former Ketamine Coma Patient #45 in the IntensiveStation, Klinikum Saarbruecken IS DOING GREAT!!!

It's Sunday evening, and I've been catching up on e-mails, etc.(including Dr. Rohr and Cantor Benjamin, our two heroes in Germany) . . . .And Tracy is out with a friend. And that is more and more the case. Yesterday, she went to New York. Today, she drove her dog over to her cousins' for a play date, came back home, went to dinner and is still out with a friend. Life is good. She looks great, is doing better every day.

She flew home from Florida (tan, she's happy to say) last Monday night. I picked her up with Marissa ...<< MORE >>

Posted by Gayle at 1/27/2008 11:12 PM | View Comments (1) | Add Comment

And every day, we thank you, G-d.

Tonight it snowed . . . wet snow. And now it is raining. A mess outside.  Rick conveniently fell asleep on "Tracy's recliner" that we bought when she came home from Germany unable to sit in a regular chair, and I  had not only Tracy's, but also Carly's (who leaves for L.A. in the morning) dog to walk. It was really gross outside, but I really didn't care.  I walked the dogs, put my hood up, and I smiled to myself as my ugly UGGs got soaked. It's like that these days.  And Tracy's in Florida with her cousin Marissa at "Casa Block-a" in Sarasota - and it's rainy there ...<< MORE >>
Posted by Gayle at 1/18/2008 12:02 AM | Add Comment

We smile, for Tracy smiles brightly. She has a new life!!! PLEASE HELP US HELP OTHERS RE-GAIN THEIRS AS WELL!

Hello, everyone. It is late at night, but Rick just approached me and told me numerous people have told him and Tracy they've been checking the site and are disappointed to find no new news. So, here I am!  Here's the latest.

A trip in a crowd at a restaurant last weekend that caused pain, but it didn't last and it wasn't RSD - just hurt like anyone else, and then it went away. And the next day, Tracy and I took a trip down to Bethesda . .. . more about that later.

Tracy continues to improve daily. She ...<< MORE >>
Posted by Gayle at 1/10/2008 12:02 AM | Add Comment

The Brooks Family FOUNDATION for RSD/CRPS is underway. but it's only the beginning. WE NEED YOUR HELP!

Just a quick note. First of all, we want to thank those who've already been so kind as to write out checks and forward them to our new Brooks Family Foundation for RSD/CRPS!  You will, of course, receive formal acknowledgement to use for your tax records.We were thrilled to have received donations already in the mail and in person over the weekend, since we just announced it this week!!  I cannot tell you how much this means to us and will mean to others as the funds are put to work. 

We had another great pleasure ...<< MORE >>
Posted by Gayle at 12/31/2007 12:29 AM | Add Comment

And for the SECOND UPDATE of the day, here's the news on Tracy's progress . . .

Today is December 26th, 2007 (which, by the way, is Rick and my "3-dozenth" wedding anniversary) and marks 8 weeks since Tracy was extubated for the final time - on Halloween. (Her initial ketamine coma treatment began October 17, 2007 and was to last five days, being slowly brought out on the six & seventh days.)  If you'll remember, it was extended to treat the very serious staph pneumonia which was noted on what should have been her fifth and final day of full treatment.

But how far we've come . . . As I began today's ...<< MORE >>
Posted by Gayle at 12/26/2007 9:36 PM | Add Comment

The Foundation is Now Ready to accept donations. Info follows:

Before I give my personal update on Tracy today, which you'll find in my next message, I am happy to say that the BROOKS FAMILY FOUNDATION FOR RSD/CRPS is official!  Set up by our family in gratitude for Tracy's treatment via the experimental protocol established by Dr. Schwartzman and Dr. Rohr in Germany and her ongoing recovery from the effects, all necessary declarations/paperwork have been filed with the State and Federal authorities to form a charitable foundation [501(c)(3)]. All donations to the foundation are, of course, tax deductible. Our purpose is to raise funding for reflex sympathetic dystropy (RSD)/chronic regional pain syndrome (CRPS)* awareness, research and ...<< MORE >>
Posted by Gayle at 12/26/2007 4:01 PM | Add Comment

LOOKING GREAT - feeling better and doing more each day!! It is a process - but the process is WORKING!!!

I cannot believe it's been so long since I updated.  Rick's been after me to do it for days, but I kept putting it off thinking I'd have the very specific information ready for donations to RSD research, as people have been asking where to send donations in honor of Tracy's recovery.   We're working on setting up a specific RSD research fund and will get the information out as soon as possible.  We just want to have all our "t's crossed and i's dotted" legally and for tax purposes before we begin.   We would be so grateful if, as you're writing out end of year donations, you'd save a blank ...<< MORE >>
Posted by Gayle at 12/15/2007 1:38 AM | Add Comment

And the first set of ketamine boosters are done . . .

Two days of having to be in Dr. Schwartzman's office in center city by 7 am. Yesterday and today, both Tracy and Judy had their first set of post-ketamine booster infusions since Germany. We were glad to welcome Judy and Linda to our home after Monday's treatment, and they went down with us today.  Both girls went through the treatment well. Tracy was concerned about the ketamine causing nightmares again, but she had no problem sleeping last night, so that was not an issue.

Dr. Schwartzman was VERY pleased with both girls' progress. He met with Linda and me individually and cautioned us that he ...<< MORE >>
Posted by Gayle at 12/4/2007 10:41 PM | Add Comment

And tonight she walked the Willow Grove Mall!

Today, Tracy worked on the computer, caught up on paying her bills and even made a couple of phone calls to explain why her payments were late.  Tripped once in the family room, twisting herself, but did not get really hurt.   Becoming more independent - and that is generally good for both her and us (as long as she's careful)!  Early tonight Judy and Mark came to visit and were amazed at how much better Tracy looks!  She does look like her younger self, before the ravages of RSD.   

Rick had been wanting to take Tracy out tonight, but she wasn't sure ...
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Posted by Gayle at 11/29/2007 1:28 AM | View Comments (3) | Add Comment

Getting stronger

Each day, Tracy is doing a bit more than the day before.While she loves her new recliner, she's not a "recliner potato".  Her "laps" around the house are increasing daily. Tomorrow we'll check it with a pedometer, so we have some idea of the distance covered per lap - just for the sake of comparison when she begins walking in other places.  Stomach issues are on and off still, but she is eating more each day.  Unfortunately, she's finding she has to be careful with what she eats at this point. She is also forcing herself to drink TWO Hi-Protein Ensures ...<< MORE >>
Posted by Gayle at 11/27/2007 10:53 PM | Add Comment

A lot to be thankful for . . .

Hope you all had a great Thanksgiving. Sorry I haven't updated since Monday evening (it's now Saturday), but it's been really hectic since we got home.

It was so fortuitous that we came home in time for Thanksgiving, but also that this would give us some down time to get things together before I have to get back into the office. Also, Carly was able to join us for the holiday weekend -  A special thanks to her new employers at Citadel Investment Group, who were kind enough to give her extra time off (when she just began ...<< MORE >>
Posted by Gayle at 11/24/2007 7:45 PM | Add Comment

HOME AT LAST!!!!!!!!!!!!!!!!!! AND IT FEELS SO GOOD FOR ALL OF US!!!!

I write to you tonight from HOME!!!  It was a very long day, beginning when we were picked up at the hotel by our driver at 8am (2 a.m. EST)  He came early b/c the roads were icy when he left, and he did not want to take any chances with our being rushed or missing our plane.  There are lots of stories from today, but I am truly too tired to tell them now.  Suffice it to say Tracy did amazingly well through each leg of our journey home.  That is, until she got out of her wheelchair to get ...
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Posted by Gayle at 11/19/2007 10:01 PM | View Comments (2) | Add Comment

AS I PACK FOR HOME. . . .

Judy and her parents left today for Frankfurt and will fly out to Newark in the morning. Tracy and I are scheduled for pick-up at 8:30 am, but when I called Heiko this evening to confirm that he'd be the driver, he said he might be here a little early. WE WILL BE READY!  He's coming in a van which we need with all our luggage and the wheelchair we came with. Tracy has not used one since she came back from the hospital on Wednesday, but it will be needed to negotiate the airports, so we are grateful we ...<< MORE >>
Posted by Gayle at 11/18/2007 1:10 PM | View Comments (1) | Add Comment

2 days till take-off!

Today was definitely better than yesterday.  Tracy's walking is improving every day.  She is walking more on her own now, but as she tires, tends to take my hand or arm for stability.  We went out for chinese food tonight, but the girls did not eat much (as usual) and were tired/achy a while before the meal ended.  So tomorrow we'll just relax in the hotel all day in preparation for the very long trip home on Monday.

Tracy did not bring any books with her,b/c she hadn't been able to read in so long.  Good thing the rest of us ...
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Posted by Gayle at 11/17/2007 2:39 PM | View Comments (1) | Add Comment

THE BIRTHDAY GIRL IS WIPED OUT!

We celebrated Tracy's birthday in the hotel restaurant tonight and Cantor Benjamin joined us for dinner.  The girls  and he did a lot of talking and laughing.  It's so funny when both girls laugh; there is no sound.  They also are too weak to laugh and do anything else (like walk) at the same time, so we can never make them laugh while they're up walking. They made it through dinner, but BD cheesecake was served up in our room courtesy of the Hopkins, with both girls lying in bed. But thank  G-d there is so much humor, because both girls are very uncomfortable a good part of the ...
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Posted by Gayle at 11/16/2007 5:02 PM | Add Comment

AND ON THE DAY AFTER DISCHARGE . . . .

Recuperation though steady, is going to be a slow process.  Tracy is walking better today than yesterday, and has been getting out of the room for meals, to just walk, and to sit in the lobby (where the chairs are more comfortable than in the room) to just sit and read her second book.  She finished the Grisham book and is on a Mary Jane Clark mystery now.  She'll be finished two books in two days, which is more than she's read in months!!!  Her concentration is returning, and that is WONDERFUL!

Tracy was able to take a bath in our ...
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Posted by Gayle at 11/15/2007 2:06 PM | Add Comment

TIRED, BUT SO GLAD TO BE OUT OF THE HOSPITAL . . .

Hey guys it's Trafyc,  Just want to thank you all for your prayers, positive thoughts and wishes throughout this whole ordeal.  I am happy to say that Klinikum Saarbrucken is now just a memory.  I am so grateful for the treatment I got there - I got the best treatment in the world from Dr. Rohr.  He wants me to "walk like a horse" rather than Charlie Chaplin.  I'm walking more like a horse every day now. 

Love you all!! Can't wait to see you!
Tracy
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Posted by Gayle at 11/14/2007 2:24 PM | View Comments (1) | Add Comment

She's reading a book!!!

Right now, Tracy is totally immersed in the new John Grisham book.  This is the first book she's read in months!!  It brought tears to my eyes to see her able to relax, concentrate and just lose herself in a book.  The fact that she is not on ANY pain meds at all is just incredible to me.  Other than the sore butt from lying on it for so very long, she has
...<< MORE >>
Posted by Gayle at 11/14/2007 1:34 PM | Add Comment

TRACY AND JUDY ARE OUT OF THE HOSPITAL AND BACK AT THE HOTEL!!!!!!!!!!!!!

We are unpacked, just came up from lunch at the restaurant downstairs, and both girls are exhausted, have achy muscles from doing stairs at PT before we left and negotiating the entry steps at the hotel. This is not a handicapped accessible entrance, so they practiced stairs before leaving the hospital. They both did fine.

Tracy is beginning to get a bit more steady, but Charlie Chaplin still comes to mind at times while watching her ambulate. They are both taking naps, and I'm glad we're in the hotel. It's doing a bit of mixed precipitation outside, and we ...<< MORE >>
Posted by Gayle at 11/14/2007 7:47 AM | Add Comment

THE RUMOR IS TRUE . . . THE COMA TWINS ARE BEING SENT OUT INTO THE WORLD TOMORROW!!

Dr. Rohr is satisfied that both girls are ready to leave the hospital setting.  In their request to be sprung a day early, they've promised their parents and Dr. Rohr  to exercise caution once they leave the hospital.  Please G-d, let them not get too cocky.  They have regained their personalities, and believe it or not, Tracy has more than met her match.  The Hopkins will really have their work cut out for them, as Judy is more of a risk-taker than Tracy. 

But for now, I believe they'll both be cautious, as they've come so far and with so much ...
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Posted by Gayle at 11/13/2007 3:10 PM | View Comments (1) | Add Comment

DISCHARGE IS SLATED FOR THURSDAY, NOVEMBER 15 - On Day 29

Today, Tracy went to physical therapy.  She's walking longer distances using a rolling walker, rode a stationery bike, did arm arm exercises with a universal and did other first time exercises for about 40 minutes.  About three hours later, after a shower and then kibutzing in the lounge for a couple of hours, she finally got back in bed.  Suddenly, she began to have muscle cramps in her legs; this was the first pain she's experienced (other than from lying in bed so long)  .  It was the first time she experienced pain since the treatment and she cried for the very first ...
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Posted by Gayle at 11/12/2007 5:08 PM | Add Comment

New photos are posted, but out of order

Hi, it's Carly again.  Just wanted to make sure everyone knows I did post some new photos from this weekend, but they are out of order for some reason.  I got tired of fighting with my computer, as long as they're there! Make sure to look at the second to last line - they are Days 24 & 25 - great pics of the girls!
...<< MORE >>
Posted by Gayle at 11/12/2007 8:25 AM | Add Comment

NEW PHOTOS WILL BE ON THE SITE TOMORROW

Carly's had a problem with her home computer in getting the pictures on that Bob sent her.  Look for them tomorrow. 
...<< MORE >>
Posted by Gayle at 11/11/2007 5:09 PM | Add Comment

And today, they both walked . . .

I am delighted to report that when I arrived today, Tracy said "Watch this" and proceeded to get herself up on the bed, from a lying to sitting position, and dangled her feet over the side.  Then it was "help me get my sneakers on so we can go walking", and we were off to the lounge where she, Judy, Bob, Linda and I spent the next few hours talking, listening to the girls tell funny stories - (Marissa and Art, you both figured large in them)- and we had a great time.

When both girls were tired, they walked back, got into bed and ...
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Posted by Gayle at 11/11/2007 4:15 PM | Add Comment

Call from Tracy this morning

While all of you are asleep at home . . .

Hi Mom!  I always hold my breath when I hear her voice . . .
How are you?
I'm doing great!  I walked to the bathroom this morning.
Not without a nurse assisting her, but WOW!  Every day is an improvement over the day before, and I HAVEN'T EVEN GOTTEN THERE YET!

Bob and Linda are almost ready to go.  Have a relaxing Sunday and I'll catch up with you later.

'Love,
Gayle
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Posted by Gayle at 11/11/2007 5:02 AM | Add Comment

We left home exactly four weeks ago today, and what a journey it's been.

We are very well known in our hotel (Victor's Residenz Hotel - Rodenhof).I think we may be setting a record for occupant days. I believe we may be the first of the ketamine families to stay here and I highly recommend it.  Everyone here is so friendly, solicitous and willing to help in any way they can. Had I known it would be this long, I might have rented a condo, but we wouldn't have enjoyed the kind attention we have here. I also would have taken a crash course in German. But I am getting a little better, and am getting even better ...<< MORE >>
Posted by Gayle at 11/10/2007 4:18 PM | Add Comment

Omens . . . The twins are doing well!

Each morning we parents go down to the lovely buffet breakfast in the hotel. Each day, we get hard boiled eggs (for protein) to go with whatever else we're having. Every day except Wednesday, I got one - and every day for the past week, every egg I've opened has had two yolks (twins). Wednesday, I did not get an egg. That was the day, I later realized, that the girls were separated. Thursday I got a double yolk and again today. I have been the only one to get ANY eggs with double yolks.  Judy was reunited w/Tracy on Thursday. ...<< MORE >>
Posted by Gayle at 11/9/2007 5:23 PM | Add Comment

New photos, finally!

Hi everyone, it's Carly again. This time, from NYC...

Just wanted to make sure everyone checks the photos tab now, because I've finally been able to post four new photos and they show a whole new Tracy!  Sorry for the delay - between being back at work and having some "disagreements" with my computer and the website that helps me design the page, it took a while!  But they are up now and they look great!
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Posted by Gayle at 11/8/2007 7:18 PM | View Comments (1) | Add Comment

The girls are reunited today and both doing well.

Tracy was thrilled to welcome Judy as her again-roommate today.  So good that neither needs IntensivStation care any longer. Both girls are doing well, with Judy about two days behindTracy in progress, but very determined.  We are all thrilled that she's doing so well.

Tracy's personality has returned.  She is our Tracy again -  despite the fact she still has very little voice, she is telling stories about her "coma dreams" and hallucinations afterward.  She's beren very upbeat, funny and not shutting her mouth all day!  She entertains all and keeps track of Judy's progress, continually encouraging and literally cheering her on throughout the day.  ...
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Posted by Gayle at 11/8/2007 3:26 PM | View Comments (2) | Add Comment

So Much better than yesterday, and not as good as tomorrow . . .

When I came in today, Tracy was sitting on her bed, showered and dressed, awaiting the arrival of a new physical therapist.  Thr first therapist bolted when she realized Tracy did not speak any German.   Still obviously very weak and deconditioned from the past few weeks (as well as all the months leading up to treatment where Tracy was able to do less and less), there was marked improvement in what she is able to do today vs. lyesterday. If Tracy continues to make simiolar improvements each day leading up to our plane on November 13, we just might not ...
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Posted by Gayle at 11/7/2007 4:38 PM | View Comments (1) | Add Comment

The girls are separated temporalily.

Today was a big day. On day 21 in the IntensivStation, Tracy finally got to have the shower she'd been craving. All tubes are out except for the central line. She's in great humor, and thrilled to have clean hair, and it's healthier than ever and looking great. See pictures taken today. They now have to be downloaded by Bob, forwarded to Carly and then published. Since she's started her new job, she's getting home late, so I don't know that they'll get on today.

Another major change today is that Tracy was discharged fron the IntensivStation. She's now ...<< MORE >>
Posted by Gayle at 11/6/2007 6:09 PM | View Comments (1) | Add Comment

20th day begun in IntensivStation,

Tracy is improving dramatically each day now.  We can now understand just about everything she says, but she still has very little voice projection; it's a decipherable whisper now. 

Before I even came in this morning, she'd been out of bed sitting in a chair for about 2 hours and had had physical therapy.  She continued to ask me throughout the day to work and help her work her arms and legs.  I ran to a medical supply store near the hospital to buy exercise squeeze balls for both girls.  Their muscle power has really been affected; the doctor says with ...
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Posted by Gayle at 11/5/2007 5:41 PM | View Comments (2) | Add Comment

nOVEMBER 4TH, 2007 - THE NEWS IS GOOD ON BOTH SIDES OF THE ROOM!!!

If you happen to have caught ny other post for today, it seems it went on with only my first "save" and most of it was lost. Carly caught it in NY and called me.   Since I am too tired (it's after midnight here) to put it all together again, let me just give you the highlights of the day without the background.

JUDY WAS EXTUBATED FROM THE VENTILATOR!!!!  and as of when we left tonight was not even requiring a mask for breathing - just the small tube in her nostril next to the still present feeding tube.  She's not herself as ...
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Posted by Gayle at 11/4/2007 6:16 PM | View Comments (1) | Add Comment

DAY #18, BUT WHO'S COUNTING.

Today was my first "spend the day" trip to the IntensivStation.  As Tracy is more awake, it is better for me to be with her more throughout the day.  She has great difficulty making herself understood; she hasn't got the energy yet to use her famous sign language which she normally likes to pull on us "sign illiterates", so even that hasn't been an option.  She mouths words, but so far, no real sounds come out when she tries to talk, so she's getting frustrated. 

Mostly Tracy's problems now seem to be positional aches from being in bed so long (the coma was ...
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Posted by Gayle at 11/3/2007 4:18 PM | Add Comment

The word for the day is JELLO! Baby steps forward, and looking better every day!

Sorry I'm so late with the posting for Friday the 2nd. The problems were not with Tracy, but with my getting on the site. Don't ask!  And Carly has only been gone one day . . .

Tracy is beginning to show more signs of coming out of this every day, but she has a long way to go. She is so very anxious to get the feeding tube removed, but she must prove that she can eat ok before they'll remove it. They don't want to remove it too soon and have to replace it. However, she ate ...<< MORE >>
Posted by Gayle at 11/2/2007 6:07 PM | Add Comment

DAY 15 COMPLETED . . .

Originally, Carly wanted to write today's update - on her last evening in Saarbrucken.  However, she's busy with last minute tech-tutoring details for the four technologically impaired baby-boomers she leaves behind. Rignt now she's working with Bob and Linda. 

Tracy continues to improve, although when we walked in the room today, she was PISSED OFF!  And really, who could blame her with the naso-gastric tube feeding her liquid carrots and rice through her right nostril and another tube running light oxygen into her left nostril.  The first  thing we understood well from her today was when she leaned her head toward her ...
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Posted by Gayle at 11/1/2007 2:57 PM | View Comments (1) | Add Comment

Hi, it's Carly again. We had a wonderful surprise today....

We walked in today, expecting at best to see that the tube had been removed as hoped.  When I first saw Tracy, she wasn't wearing the new breathing mask that they put on after her initial extubation, so my first thought was that they hadn't removed the tube after all and my heart fell.  I walked around to the other side of her bed so I could see her face.  Once there, I realized there was NO TUBE and NO MASK and HER EYES WERE OPEN!!!!

When she saw me, the first thing she did was very quietly croak "I love you."  Mom, ...
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Posted by Gayle at 10/31/2007 3:48 PM | View Comments (4) | Add Comment

She's doing better, but we still have a way to go

Our Tracy is definitely doing better today, even though she had to take a step back by  going back on intubation.   It is giving her body an extra period of time to build up strength, while also affording an easy access for nebulizer type treatment to open her airways more.  This should afford her a better chance to breathe on her own once the ventilator is removed for good.  Dr. Rohr is hopeful that he may be able to do this tomorrow morning, assuming that she continues to improve through the night.  She was definitely much more relaxed in her ...
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Posted by Gayle at 10/30/2007 3:49 PM | Add Comment

Evening update after a call to the IntensivStation.,

Hi, it's Gayle again.  I called the ICU and both Carly and I spoke with them.  We were told that Tracy is asleep, and is comfortable now.  However, that was after they reintubated her.  She was just struggling too much and it was exhausting her.  They want to give her a little more time to get stronger and will take it out again.  I guess it was just too soon.  T
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Posted by Gayle at 10/29/2007 5:39 PM | Add Comment

The breathing tube is out, but a tough day...

Hi, it's Carly.  Today was a tough day, so I'm giving my mom a break from writing the update tonight.  We arrived to see Tracy and found that they had in fact extubated her earlier in the day.  The breathing tube has been replaced by a mask that will help to retrain her lungs to breathe normally on their own.  Her breathing is labored right now - she is breathing on her own, but the breaths are more rapid and shallow than the doctors would like.  We are told that this is usually the hardest step for patients after having been ...
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Posted by Gayle at 10/29/2007 12:49 PM | Add Comment

Out of the coma, but still sedated . . . another step along the road to recovery.

Tracy definoitely looks much better than she has over the past few days.  She opens her eyes often, yawns, has moved her hands and feet a little, and moved her head from side to side.  Her only communication with us has been with blinking her eyes when we ask her questions.  I thought she smiled once or twice, but we're not sure.  She's been relatively calm in her sedation, but seems to be annoyed with the tube when she's most aware.  That's why they keep her sedated and want her to awaken bveroy gradually.  The sedation will continue until after ...
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Posted by Gayle at 10/28/2007 3:25 PM | View Comments (1) | Add Comment

BABY STEPS FORWARD . . .

It was a good day.  We drove with the Hopkins to Metz, France (about 1 hour+ drive from our hotel).  Saw cathedrals, had crepes for lunch, did a bit of shopping and headed back to Saarbrucken in anticipation of getting ready to go to the hospital for our usual 4-6 pm allowed visit.  The news is good. 

Tracy, while not in any way really awake, is beginning to open her eyes and look around on a fairly regular basis.  She also yawned a few times despites the tubes still in place.  She does still have a fever, but it is ...
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Posted by Gayle at 10/27/2007 2:06 PM | View Comments (1) | Add Comment

FIRST MOVEMENTS FROM TRACY!

Both Tracy and Judy are improving.  For the moment, it appears they've switched places.  Now Judy is lying on her belly recovering and receiving extra Ketamine, and Tracy is still lying elevated on her back.  Judy's fever is more close to normal than Tracy's.  They've now switched Tracy to a new broad spectrum antibiotic along with the one targeted at her now identified bacteria.  The new antibiotic is supposed to be the strongest thing out and its very new.  They anticipate it will knock out anything left over from the first antibiotic to get her back to normal.  They are ...
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Posted by Gayle at 10/26/2007 4:13 PM | View Comments (1) | Add Comment

Life on a see-saw with Tracy and Judy

Slowly and steadily, tracy's lung function is improving.  However, her temperature is a bit higher today.  She is requiring less oxygen and all of her vital signs are stable.  The ICU doctors have decided that she no longer needs to be turned to lie on her stomach - she is now lying sonehat elevated in bed, although she will continue to be regularly repositioned as before to prevent any decubiti (bed sores caused by lying in one position for prolonged periods of time).  She is also still on the air mattress, which is being regulated for her comfort and protection.  ...
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Posted by Gayle at 10/25/2007 3:11 PM | View Comments (2) | Add Comment

Still out, but the news is good so far . . .

Tracy is still in a medically induced coma b/c of the pneumonia, but we've had more explanation about it today.  Once they've had her lying on her stomach, they've seen marked improvement in all areas, her O2 levels, her BP, etc.; apparently, they feel that because position seems to be affecting her situation, they believe her pneumonia is not bacterially-induced, but is chemical/positional in nature.  They are still keeping her on the broad-spectrum antibiotic just in case.  They switch her from front to back positions every 12 hours now, and they feel she needs at least one more rotation lying ...
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Posted by Gayle at 10/24/2007 2:36 PM | Add Comment

A slow transition in store . . . . .

Both girls are fully off Ketamine now, but still completely out.  However, when we arrived today, Tracy was lying in a new position (she'd been placed on her stomach) and seemed very comfortable.  We found out that her pneumonia had gotten worse last night and they started her on a very strong, broad spectrum antibiotic IV.  They will change it to a more specific antibiotic once the culture results are complete, but they did not want to wait to get control of it.  Her vital signs are good, and her oxygen levels better than yesterday.  But she does have pneumonia and ...
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Posted by Gayle at 10/23/2007 11:35 AM | View Comments (3) | Add Comment

Carly has arrived!!!

We are thrilled to say that little Big Sister has arrived, very cheerful, safe and sound, seeming no worse for her plane/train rides, but I'm sure she must be tired.  However, she's game for heading to see Tracy and Judy ASAP.  We'll do a bit of shopping/feed her some lunch first at St. Johanna Square to keep busy until we can go to the hospital, and head there directly. 


We'll post an update later. 

Enjoy your Tuesday.

Love, Gayle
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Posted by Gayle at 10/23/2007 5:39 AM | View Comments (2) | Add Comment

Guten Morgen, Friends and Family

Carly is in!  She's currently on the train from Frankfurt to Saarbrucken.  We are to pick her up at 11:10 am, while all of you are still asleep.  (Time difference is six hours later here in Germany).  Just wanted you to know she's arrived safely.  By the time you awaken, she'll be with us. 

 

Have not been to the hospital at this point.  I believe we'll still be sticking to IntensiveStation hours (4-6 pm) at this point.  When they tell us we can stay longer/come earlier, we will.  They have all of our phone numbers just in case ...
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Posted by Gayle at 10/23/2007 3:15 AM | Add Comment

We've passed day five, and we're on our way back!

Tracy and Judy are definitely still in a comatose state, but the level of ketamine is being brought down.  The first reduction had been made before we got to the hospital.  Until today, we seemed to be at "near perfection" with regard to the treatment and none of the common complications. Today, we learned there has been a slight complication - both girls have the beginnings of pneumonia, which is being treated.  Dr. Rohr had told us that this type of complication will generally occur about the third day.  The fact that it did not appear until now is good, because Tracy and Judy are already ...
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Posted by Gayle at 10/22/2007 3:35 PM | View Comments (2) | Add Comment

Completed Day Four, Starting five, Now we find there may be a day more.

The girls are doing well.  Some minor "fixes" have been needed, but no real complications.  No sign of any infections, etc.  Have been some minor problems with regard to feeding tube, etc. but all has been attended to and they are satisfied that all is well and the treatment not affected. 
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Posted by Gayle at 10/21/2007 1:50 PM | View Comments (6) | Add Comment

A lazy Sunday for us . . .

We have been relaxing at the hotel all day.  Would have gone to the pool if I had a bathing suit, but will do so once Carly brings it.  Just reading a wonderful book A Thousand Splendid Suns by the author of Kite Runner which I hear is due to open as a movie in the States.   Sounds like 1000 splendid suns has been happening at home.  Crazy Indian summer - sorry we're missing it.

It's a bit glum weatherwise here today, and very chilly.  But the hotel is relaxing and nice.  The people have been very kind at both the hotel ...
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Posted by Gayle at 10/21/2007 8:01 AM | View Comments (2) | Add Comment

Three days done . . day Four begun.

Went to visit Tracy and Judy today.  Have to admit, I became very nervous when I saw them about to xray Tracy in her bed.  All I could think of was a chest xray for pneumonia (which we were told is a possible complication.  Not the case thank goodness; her central line had dislodged slightly and they had to put a new one in to assure sterility.  The xray was just to make sure the new line was perfectly positioned.    It was.  I was a bit nervous today, but Rick understood a lot more than I did and is satisfied; that calmed my worries.    ...
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Posted by Gayle at 10/20/2007 2:03 PM | View Comments (2) | Add Comment

Day two complete/day three in progress . . .

Our biggest problem today was in figuring how to do laundry in an empty German laudromat.  Seventy-five minutes post-arrival, we got five loads going between us.  And that's only because one gentleman walked in to do laundry and HE SPOKE ENGLISH!!  He even knew what to do.   Now everyone has clean laundry besides Rick; I didn't know he was putting his away in a suitcase.  Oh well.  We'll have to do this again!

Then we went directly to see the girls.  It is uncanny how similar everything is.  Both girls are doing exactly as they are supposed to with regard to vital signs, ...
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Posted by Gayle at 10/19/2007 3:11 PM | View Comments (1) | Add Comment

A work in progress . . .Day two

Visiting hours are from 4-6 pm only in the "Intensivstation", so that's when we first saw Tracy and Judy today.  This is truly a COMA!  We did talk to the girls, but there was absolutely no sign of movement, recognition, etc.  They are just so soundly asleep that it's incredible.  They are certainly not in pain at this time. 

Both girls had asked that we take pictures of them in the coma.  (Judy wants a full video - Tracy's only asked to see what she looks like).  It's not nearly as scary-looking as I was led to believe.  I just ...
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Posted by Gayle at 10/18/2007 4:23 PM | View Comments (1) | Add Comment

The coma has begun!!!

Tracy and Judy are both under the influence of the ketamine, totally out and seem to be fully at ease.  They are completely nonresponsive, but we don't know whether they hear anything we say or have any awareness.  All vital signs are normal, and Dr. Rohr says all went well in getting them set up (Tracy went in first and once she was under, Judy followed).

They are in an ICU room together.  The room seems to  equipped with all the supplies they need, and a nurse is with them 24/7.  We are so pleased the girls are together; we can all watch over both ...
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Posted by Gayle at 10/17/2007 11:16 AM | View Comments (3) | Add Comment

waiting . . . .

Hi all!  Lost two different updates I had done today.  Actually, it's now 12:35 a.m. on Wednesday.  I'll be much briefer than I was before.  The good news is that Tracy was matched somehow with Judy Hopkins from NJ, whose story we read about last summer when my niece, Mindy, forwarded it to me from the Asbury Park Press.  Carly has already sent you a link to that site.  Tracy and Judy are the same age, have RSD about the same length of time, are the same religion,  and have a lot of other things in common.  Even to the point that Judy ...
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Posted by Gayle at 10/16/2007 5:36 PM | View Comments (1) | Add Comment

Hi, it's Carly...

Just wanted to post a link to an article written in the Asbury Park Press about Judy Hopkins, who is going through the coma at the same time as Tracy.  She and her family have already been a wonderful comfort for my parents and Tracy - we are lucky to have been paired with a family with whom we have so much in common.  As my mom said earlier, please include Judy in your thoughts and prayers for Tracy.  I look forward to meeting Judy and her family when I arrive in Germany next week.

http://www.app.com/apps/pbcs.dll/article?AID=/20070829/NEWS/708290347

I have been in regular contact ...
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Posted by Gayle at 10/15/2007 5:35 PM | View Comments (1) | Add Comment

We're here in Germany!

It's now 4 p.m. in Germany on Sunday, October 14th.  It's only 10 am EST in the US, so most of you haven't checked us yet.  We did really well on the plane.  It was very comfortable in Business Class for Tracy and me.  Rick is still working his kinks out from Coach, but I did offer to switch off with him during the flight, which he gentlemanly refused.  Tracy kept worrying what Daddy was eating, if he was sleeping, etc.  He accomplished the first, but he says, not the second - come on Rick, not even a little??????????  

Anyway, ...
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Posted by Gayle at 10/14/2007 9:04 AM | View Comments (1) | Add Comment

Tuesday night . . . 4 days till lift-off!

Sorry I haven't kept up. So busy. Tracy and I flew to Boston for her to participate in a clinical study for RSD, but it didn't work out, unfortunately. The particular test she had to take was too physically painful for her at the time - perhaps if it didn't follow the plane trip, it would have been okay. She  tried to begin again and tough it out - to no avail.  The trip itself was exhausting for Tracy. Fortunately we were able to upgrade to first class, b/c we had to sit on the runway for two hours before the plane could take ...<< MORE >>
Posted by Gayle at 10/9/2007 9:42 PM | View Comments (1) | Add Comment

A silver lining in the cloud we've been under . . .

Tracy was dealing with pretty continous pain today, plus a myriad of other RSD symptoms, but is handling it well emotionally.  We are just focused on a much brighter future, and that makes it easier to get through these days.  Carly came home from California last night, so she came to pick up Ollie this afternoon (he had a class tonight in Manhattan he couldn't miss - he's hopefully, if he passes, to become a therapy dog). 

Tracy wanted to give Carly her birthday presents early because "I'll be in a coma on your birthday".  So she did.  Carly loved the two dresses ...
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Posted by Gayle at 10/3/2007 10:33 PM | View Comments (1) | Add Comment

Today, Monday, was a fairly good day....

Today, Monday, was a fairly good day.  Yesterday, she was too exhausted, hurting too much, etc. to even get out of bed. Today, she called me at the office and told me she'd like to go shopping - so guess what we did . . . . - new "comfy" outfits needed for Germany!  We also made another stop, and had lunch before the "decent time" ended. We were on our way to another store when she said, "I'm sorry, can you just take me home?"  She's sorry?  What for?  She keeps up and tries to be thankful all the ...
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Posted by Gayle at 10/2/2007 12:00 AM | Add Comment

13 days to lift-off...!!

We are just trying to get through the next couple of weeks until we go to Germany.  We did succeed in doing Tracy’s favorite activity next to teaching – shopping - this Friday.  We actually went to Bloomingdales between doses of pain meds and she shopped for her sister’s birthday gifts (Carly is flying to Germany on her birthday, October 22) and a few new sweaters.  She was able to walk around and try them on. This was wonderful!  Next we went to DSW, but by that time, energy was waning and I pulled the wheelchair out of the trunk ...
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Posted by Gayle at 9/30/2007 10:02 PM | Add Comment

Tracy is going to Germany!!!!!!!!


The bad news is that Tracy's RSD has worsened.  But there is very good news.  She is going to Germany for the treatment which we are praying will afford her a cure. 

 

Dr. Schwartzman is sending her to Saarbruecken, Germany.  The German docs (led by Dr. Rohr) want her there on October 15th.  There'll be some testing first, and she is scheduled for the medically induced (ketamine) coma beginning on the 18th.  The hope is that this (in  layman's terms) that this will shut off the nerves which are constantly awry, misfiring and sending severe pain signals to Tracy's ...
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Posted by Gayle at 9/26/2007 11:19 PM | Add Comment

Getting ready....

The first of many posts as we are beginning to prepare for the trip to Germany...thank you to everyone who visits this site to check on Tracy's progress. Your prayers and positive thoughts for Tracy are much appreciated.

xo,
Gayle, Rick and Carly
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Posted by Gayle at 9/25/2007 11:35 PM | Add Comment
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