Alex’s all time favorite place was in West Virginia where the “Sweaty Boys” had been going with Dan and Bob (owner and Alex’s best friend’s dad) to spend weekends a couple of times a year since they were little kids. It has a rustic cabin and a beautiful small river with a classic swimming hole. Being a major nature, Alex was always at home exploring, finding new creatures, swimming, climbing on the cliffs, eating junk food (that the women would never let us eat if they were along), and generally being free in the great outdoors. So when we were trying to decide where to scatter his ashes, we knew right away that Alex would want it to be in WV.
We waited until the weather warmed up a bit and on the last weekend in May, a group of more than 30 of us (Midvale Sweaty Boys, school friends, Bob/Judy, Opa, Nadya/Adriana/friends, etc) set out on was one of the most moving experiences for all of us that have played a role in this Alex drama. We arrived there on Saturday in the early afternoon as thunder storms were threatening all around. We quickly changed into shorts and swim trunks and hiked down to the river where we had to wade about half a mile in cold water up to our waists in places to reach the swimming hole. There we did what the “Sweats” had always done - splashed in the water, skipped stones, snacked on watermelon & junk food, threw rocks at a tree that Alex was best at hitting, and generally had a great time. We could all feel that Alex was there with us, watching, smiling and approving. This is exactly how he would have wanted us to do this.
Finally we held hands in a circle, sang Amazing Grace, recited a couple of poems, and bade him farewell. The Sweaty Boys took turns opening the box and then Dan & Marijke scattered his ashes into the water. Everybody took a handful of the flower petals that we had saved from his celebration and tossed them into the water where they floated on the surface, spread out, and some even came upstream to where we were hanging out. The sun, that had been hiding behind what we were afraid were rain clouds, came out just at that moment and bathed us in a warm glow. It was a classic Alex moment - a picture of natural beauty, human bonding, and serenity.
That evening we all hung out in the cabin and listened to music, played games, barbequed hamburgers, and finally took the traditional midnight stroll in complete darkness, through the Paw Paw tunnel. The energy in the group was incredible – everybody was getting along, joking, laughing, and having a really good time. We all agreed that only Alex could get such a large, diverse group (aged 10 to 80) to experience such harmony. The whole weekend was filled with our shared love for Alex. That night, we built a bonfire in which we burned Alex’s box and all the cards that all our friends had sent.
The next morning we had a pancake breakfast, took some group pictures, and came home – exhausted but with the warm feeling of knowing that Alex will continue to be with us and inspire us with his example of friendship and humor.
And so, the community of Alex has reached another phase. Please, please, please do keep in touch. You are all welcomed to visit anytime and, if you can’t, please call or write (this Web site is no longer the best way). We have something special in common – we were all touched, in one way or another, by the love inspired by a boy/man named Alex.
Sunday, July 1, 2001 -- 02:19 p.m.
| The Spirit and Community of Alex |
The visiting family has gone, the girls are back in school and the flowers from Alex’s Celebration have dried up. We are starting to get adjusted to a “new normal” without him and, at the same time, get some perspective on what has happened to this family.
It's interesting to note that, with all the people that spoke both publicly and privately to us about Alex, very few mentioned the usual idea that, “it’s a shame that he passed so young because he had so much promise.” Instead we have heard again and again how our son accomplished so much in building a loving, sharing community among his peers before the accident as well as with the larger circle that formed after it. We take great comfort in the chorus of confirmations that Alex gave more to the world in 13 years (was it 15?) than most of us will in 80.
Alex remains in the hearts of the scores of individuals that he touched with his generous charm. He was a man of peace, beauty and humor. If we follow his example and teach it children to our children, they too will pass it on to their children and their children’s children......... and Alex’s spirit will live forever.
This will be the last update on this Web site until May when we scatter Alex’s ashes at his favorite creek in West Virginia. Please call or stop by our home for a visit. And thanks again for being part of the Community of Alex.
Tuesday, February 13, 2001 -- 05:34 p.m.
Many folks asked us for copies of the photos some friends enlarged for the Celebration of Alex. We've picked three of the best and included them in the images on the Web page. We've also uploaded high resolution scans to http://photos.yahoo.com (use ID = alexsalcedo2001 - password = alex). You can either download them to your computer or you can order nice photographic quality prints from Yahoo that don't cost so much and will be mailed to you.
We'll be doing a couple more updates so stay tuned.
Sunday, January 28, 2001 -- 05:33 p.m.
| Images from Celebration of Alex |
For those of you who were not able to join us in person for the Celebration of Alex, we have just uploaded several new images to show the outpouring of love and respect that he inspired. Salsa’s friends sat on the floor in front, the family and friends sat on chairs but the majority stood and packed the hall way beyond capacity. We were overwhelmed not just with the number but with the range of participants.
It’s hard to explain the full extent of the emotions swirling around us. Marijke and I waited for 45 minutes for everybody to settle down before we arrived with Alex’s remains (in his now famous box). Joe Eldridge, father of his first best friend and chaplain at American University, set the tone and then guided us through mostly upbeat reflections on Alex by his family and friends. We closed with a cathartic sax/voice rendition of “Amazing Grace”. About half of us then took a nice long walk through Alex’s favorite parts of Wheaton Regional Park, scene of many weekend outings and birthday parties. Afterwards we crowded into our home for food and drinks with many people that had come from far and near.
Just as with this entire experience, except for one horrible detail, this has been a very inspiring and positive experience. We are comforted that Alex’s spirit will live on through the many people he influenced with his affection, humor, and example of non-violence.
Tuesday, January 23, 2001 -- 10:36 a.m.
This whole event has been classic Alex. Transforming a suppreme tragedy into a positive inspiration for all of us. The real measure of a person is the love and admiration they inspire and, by that measure, Alex lived a very full life that just happened to be only 13 years long. As I said at the celebration, his spirit will live on every time we look out for someone less fortunate or crack a joke instead of arguing.
One of the negative aspects of this has been how hard it hit Alex's caretaker, Eugene, who had become practically a member of the family. We are grateful for the the way he took care of Alex, took him for walks, and played a range of music for him. Besides home health care, Eugene has a side business cleaning houses/offices and doing yard work. He also has a heavy duty van, perfect for moves in the DC area. His phone is 202-398-2794.
Stay tuned to this site for our posting of some images of the celebration. We will also post instructions of how to obtain prints of pictures of Alex (for those who asked).
Sunday, January 21, 2001 -- 08:37 a.m.
| Thank you all from Marijke |
Words can not express our gratitude to all of you for your heartfelt support during Alex's illness and his celebration. During Alex's illness you strengthened us with your prayers, care, diners and visits. After his passing you helped us celebrate Alex with your presence, cards, phonecalls from all over the world, flowers, food and drink, visits and your continued spiritual messages. What a celebration of Alex! Thank you all.
Our special thanks to Alex's friends who hung with their Salsa through his coma, helped us plan the celebration, provided support to our family, wrote beautifull poems and messages for the celebration, on school marquis, banners and boards, put up a memorial on the street corner where Alex was hit, and showed up in hordes during the celebration. Your numbers and dedications gave us so much peace and joy. We open Alex's room anytime, with all its memories, music and memorials for your grieving.
We thank our families who traveled in full force from all over to be with us, as well as our dearest friends from highschool, the Dominican Republic, the godfathers and fairy godmother who dropped all to fly or drive long hours to be at our sides.
Thank you always Midvale for your renown support and love for us, your logistics, making of the box, bringing us food, drink and cheer, and managing the celebration. What would we have done without you!
Alex's wonderfull caretakers in the three hospitals and at home, who without ever having seen our boy's dazzling smile, gave him and us their best care, prayers, and whatever new and amazing therapy or treatment we asked for. Also to the behind-the-scenes folks who braved insurance companies, hospital and state bureaucracies to get the best continued care at home. What challenges you overcame for us!
To our dearest friends from so many of our past and present lives. Those from our lives in Central America who preached, arranged Alex's shrine with its beautifull pictures, and comforted us; the friends of our daughters and their mothers who jumped in; the PTA moms who kept our extended family fed; etc., etc.
Thank you colleagues and instructors for supporting us during these tragic and difficult 18 months and for joining us in celebrating our amazing boy!
A week ago today our dear boy passed on to a better place. We grieve the loss of our amazing son, friend, relative and Midvale Sweaty Boy, but continue to celebrate Alex, his humor, creativity, inclusiveness and his love for all kinds of people, of animals and of peace.
When Eugene left us after Alex's passing, the metro passenger next to him noted his grief and sent us this poem by an anonymour author.
Do not stand by my grave and wheep-
I am not there,
I do not sleep.
I am a thousand winds that blow,
I am the diamond glint on snow.
I am the sunshine in pouring rain,
I am gold on summer grain.
When you awake in the morning hush,
I am the swift uplifting rush
Of quiet birds in circling flight
I am the soft starshine at night
Do not stand by my grave and cry-
I am not there.
I did not die.
And so, my dear son, you will continue to be with us. We shall celebrate you today and every day thereafter!
Wednesday, January 17, 2001 -- 09:03 p.m.
Again, thanks to all the individuals that turned what could have been a dark and deeply depressing moment into an inspirational gathering of souls. We were overwhelmed at the turnout from Alex's and our family's life and are deeply appreciative to the folks that made it happen (click here for the program). The heartfelt expressions from “Salsa’s” friends were the most precious tribute to how much our boy gave to all of us in that room and beyond, both before and after his accident. We take great comfort from knowing that Alex would have – no, actually did – appreciate the flowers, music, humor and, most of all, love that we all shared for that moment and will treasure for the rest of our days. The walk through the park and gathering at our home afterwards were a cathartic icing of a beautiful spiritual cake.
We’ll post images and other details, possibly transcriptions of some of the presentations, in the coming days. We are emotionally exhausted and the physically fried after orchestrating the logistics of this event, so please be patient for the next updates.
Tuesday, January 16, 2001 -- 01:04 a.m.
This evening 4 dads and Opa took Alex's beautifully finished box and drove to the funeral home to pick up his ashes. The trip was a nervous, solemn affair punctuated by somewhat humerous attempts to lighten the mood. When we arrived and rang the doorbell, the funeral director peered out the tall double doors with a distainful look because we weren't dressed like most people that come to a funeral home. He ushered us into the "well appointed" library and left to get the ashes. Without realizing it, each of the five of us gravitated to a far corner of the room while making small talk to pass the minutes that seemed like hours. One of the dads nervously turned the box over to peer at the dozens of signatures and started cackling at what he read. "Hey Alex, nice room, Trevor." We all practically fell down laughing till tears rolled out of our eyes at what had been intended as a last private joke between adoring cousins. We're certain that Alex also had a good chuckle over that one.
When the funeral director came in with the ashes we were still trying to compose ourselves. We quickly calmed down and each cradled Alex's remains in our hands - he weighs about what he did when he was born. I gently placed him in the box and we took turns screwing the base on and then turned it upright. We held it between us while we hugged in a circle and shed a few tears. A perfectly perfect moment.
And so, Alex continues to bring us together with humor. We are all remarking how wierd it is that we expected to feel a whole lot worse about this. But Alex would prefer it this way.
Saturday, January 13, 2001 -- 07:32 p.m.
Because the family feels that Alex's spirit has always been much more important than his body, we decided on cremation. We weren’t sure how to handle his ashes and the funeral home “directed our attention to” urns that were much more ornate (not to mention expensive) than Alex would have wanted. When we asked them to show us something simpler, they looked down their unctuous noses and pointed to a crappy stained wooden crate for $175!!! The Midvale neighbor that drove us to the funeral home leaned over and whispered, “Hell, we can make something better than that.” So the idea of a box for Alex began to take shape.
That evening, three of us Midvale dads and Opa (Alex’s grandfather) went to the lumber section of the local hardware store. We debated and compared dozens of boards to find the right one of the proper dimensions that was not warped and had a beautiful grain. The next evening more Midvale dads and Opa assembled, with a case of beer, at one of their basement workshops. In between lots of beers, hugs, toasts to Alex, and belly laughs to “men’s” jokes, we took turns using a joiner/planer, radial saw, belt sander, router, nail gun and drill set to construct a beautiful box (see the new images).
The next day Opa was in charge of directing the many visitors on sanding and polishing Alex’s box. Everybody (even ladies) who participated got to sign it on the inside. This was wonderful for all of us to collectively channel our grief in a constructive and upbeat way.
We all are also starting to realize the full effect that Alex had on so many people. What a powerful example! This has really helped us, to a surprising degree, to turn our mourning, for now anyway, into a celebration of Alex.
Saturday, January 13, 2001 -- 02:47 p.m.
| Invitation to Celebration of Alex's Life |
You are all invited to join us in a lively but informal "Celebration of Alex's Life" this Sunday, January 14 from 2 to 4 PM at the Visitor's Center of Brookside Gardens in Wheaton Regional Park (click here for directions).
We are asking Salsa's friends, or anyone else who knew him, to write and bring a brief note about a detail or incident that illustrates his character that we can tape up for all to see. During the "Celebration" they will have an opportunity to read these notes out loud and anybody else who cares to participate will have a short time (one minute max please) to share their reflections.
Afterwards we will go out to stroll around Alex's favorite parts of Wheaton Regional Park. Finally we will all gather again at our home (11112 Midvale, Kensington MD 20895) for food, beverages, and further celebration of Alex well into the evening. (Anybody interested in bringing food - to our house not Brookside - please contact Judy at 301-942-6554.)
One of the most touching memories I have of Alex is when he was about four and covered in dirt from sweating and playing with his friends in the front yard of our house in the Dominican Republic. When he heard Marijke driving up, he ran around the garden, quickly picking a bunch of flowers, and then stretched his grimy little hand out through the iron gate to offer them to her. We know he would apprecite some of you bringing a handful of flowers to the celebration - something simple, not a store bought arrangement - if it weren't winter, wildflowers or something from your garden would have been ideal. We'll have vases there to put them in.
Friday, January 12, 2001 -- 02:45 a.m.
| Donations in Memory of Alex |
Many people have been asking about where to send checks notated with "in memory of Alex Salcedo". Here are a few suggestions:
Brain Injury Association of Maryland
2200 Kernan Drive
Baltimore, MD 21207
National Rehabilitation Hospital Foundation
102 Irving St, NW
Washington, DC 20010-2970
Children's National Medical Center Foundation
111 Michigan Ave NW
Washington DC 20010-2970
However the posting we made more than a year ago (see below) asking for blood donations is still valid.
"Our family is trying to generate positive outcomes from this terrible crisis. All of you who know Alex know that he also wants this. We are very grateful to Children's Hospital for saving our son's life and therefore urge all of you to donate blood. For more information please call Children's National Medical Center, Blood Donor Center at (202) 884-5437. If you live out of the Washington DC area please donate to the nearest blood bank."
Thanks from Dan, Marijke, Nadya, Adriana and Alex
Friday, January 12, 2001 -- 02:27 a.m.
| Your expressions of support |
You can't imagine what a source of strength your messages of support are to all of us in this household. I couldn't sleep and so I've spent the last half hour pouring over the latest missives, especially the ones from Salsa's friends. I take a huge ammount of comfort in knowing that Alex, even in the 13 years before the accident, earned more love and respect from his friends than most of us will in a full lifetime.
And that's the type of person he always was. I remember when he was 5 years old and crazy about his collection of Ninja Turtles, if one of his friends liked one in particular, he'd just give it to him without making a big deal about it. It never was a matter of trying to get people to like him - that was never a problem for Alex the way it is for some of us. Even when I took him on the month long trip to South America, wherever we would go, he would invariably make friends with one or a bunch of kids, even when he couldn't speak the same language. They would just start throwing a nerf boomerang or ball around and eventually run and laugh themselves into exhaustion - pure and undiluted joy of sharing an experience with another human being - that was the beauty of Alex that we can all learn from.
Yesterday, the guys on Midvale decided, rather than spending a fortune on some tacky urn from the funeral home, to make it ourselves and keep things upbeat at the same time. Opa Velzeboer went with us to the hardware store last night to buy some nicely grained No 1 pine. This evening at 7 we're going to assemble down the street where a neighbor has plenty of power tools to craft a nice but simple box for Alex's ashes. Any guys who want to help are welcomed - just bring a six pack and a new joke.
We also need input from Alex's friends for ideas/details on the memorial on Sunday. Please check in with Nad and Adz.
Thursday, January 11, 2001 -- 05:50 a.m.
After the initial shock of Alex's departure has started to subside, with the help of so many wonderful folks we are realizing that he is in a better place. He looked really peaceful this morning for the first time on a long, long while. We can't begin to understand what this is all about but we are starting the long journey toward acceptance.
We now have most of the logistics in place and our families are starting to gather from all over. We are now open to receiving more phone calls and visits.
Also we are planning a memorial celebration of Alex's life for Sunday from 2 to 4 at Brookside Gardens in Wheaton Regional Park, followed by a stroll through the sections of the park that were Alex's favorites from the time he was a little kid. Afterwards we'll gather here at our home for a bite to eat. Of course you're all welcomed. We'll post additional details. In the meantime don't invest in expensive flower arrangements.
The short answer to everybody's question is, "Alex coughed himself into his pillow sometime last night and suffocated."
Wednesday, January 10, 2001 -- 10:44 p.m.
| Alex's great heart has stopped |
I'm very sorry to have to spread the news that Alex passed away last night. We are devastated with grief and dealing with the logistics of what we have been avoiding thinking about for so long. However everybody in the family is OK under the circumstances.
Please check back on this site for updates. Until we are able to get things stabilized we would prefer for you'all to communicate through this Web site. We'll be posting details as we know them. Tentatively we are planning a service for Sunday.
Please pray for our son.
Wednesday, January 10, 2001 -- 10:50 a.m.
Well we sure are looking forward to 2001 being calmer and more upbeat than 2000. On New Year's Eve we took Alex to a Midvale party where he and everybody there was quite at ease. Before the actual stroke of midnight however, Alex, Marijke and I gathered at home for a quiet little celebration. The girls, of course, were out on the town but called us right at 12.
Folks continue to show us the greatest of kindness and support. Tonight we have our Salvadoran friends bringing over "pupusas" and tomorrow other friend are bringing an Iranian feast.
The only slight problem is that several of us have colds from being cooped up inside all these days. Marijke and I both have had headaches and we hope we don't pass it on to Alex.
We mailed out a New Years e-letter to everybody that posted to this site. If you changed your e-mail but want to receive it, let me know at alex@peoplink.org
Friday, January 5, 2001 -- 05:59 p.m.
We've all been together for Christmas and it's a whole lot better than last year. The girls are home from college and my mother even came from Texas for a week. We've ben having lots of visitors so stop in if you are anywhere nearby. Trouble is we're eating way too much.
Alex is fine and has even enjoyed the outings in the cold.
Sorry if you tried to post a message - it was broken for a week but is now fixed. We'll do another update soon.
Wednesday, December 27, 2000 -- 11:18 p.m.
Alex and I are here together - the two of us, just chillin'. Over these 16 mmonths, we've had prayers and words of encouragement from many of our loved ones and they have all been of great help in coming to terms with Alex's situation. One story in particular has stood out for me and has been extremely useful for gaining a healthy perspective. It compares life to taking a long awaited trip.
Suppose that you have been planning for years to take an extended trip to Paris. You've been studying French and reading all about the famous paintings at the Louvre. You've packed all the right clothes for romantic spring strolls along the Seine winding up with a nice dinner at a quiet little restaurant on the Left Bank. You board the plane and it takes off smoothly as you settle into your seat. Suddenly the captain comes on the speakers, "Welcome aboard our flight to Rome".
"Rome?!", you shout. "What's going on here? I'm supposed to be going to Paris, it says so right here on my ticket! I never signed up to go to Rome!! I don't speak Italian and I don't even like spaghetti!!" You rant about how when you land, someone is going to have to fix this screw up and get you to Paris right away. But when you get there you're told that you simply can't go to Paris. At first you're bewildered and angry. You explain to everybody who'll listen that it's not fair and that you're not going to put up with this, but that doesn't change anything.
After a few angry, sullen days, however, you start noticing that Rome is a little bit warmer and slower paced than Paris. The people are more friendly and less arrogant. Italian is actually easier to learn than French and you've developed a taste for Chianti. You look around and begin to realize that, while it's not the destination you had planned, it has charms that you never imagined. Once you let go of the "injustice" of it all you begin to realize that living in Rome is OK.
So it is with Alex. Naturally, at first we reacted vehemently that this simply could not be, that this situation had to be corrected. We did everything possible to get us all back to the destination we had assumed for so long. When it didn't work we were confused and pissed off - we couldn't accept it. But now that Alex is home, we can start to appreciate that this situation has its up sides. Alex is stable and we've had the loving support of a huge circle of friends and family. While we don't get out as much, plenty of folks stop by and visit. And we're reading more than we used to when we were always on the go. We've gotten to know more about Alex and what a truly wonderful person he is than we ever would have under normal circumstances. Yes, it's a different destination than we had ever imagined and certainly not one that we chose but, all in all, living here is OK.
Thursday, December 14, 2000 -- 10:30 p.m.
I had forgotten that in the scramble to get Alex home, we were once again blessed with extraordinary luck. All the time in the hospital Alex had been on a deluxe mattress filled with air in computer controlled chambers which kept him from getting bed sores (common in patients who don't move much). However the insurance company did not authorize one for home use. Fortunately some friends we met in Galveston, whose son had been in a coma but had emerged, had this type of mattress that their church had given them and they sent it to us free (we only had to pay for the shipping!).
Marijke is feeding Alex more and more in keeping with the gluttonous spirit of the season. The girls and my mother will arrive next week and we're looking forward to a relaxing Christmas at home this year. Please stop by anytime - we're always here and open for visits.
Saturday, December 9, 2000 -- 01:41 p.m.
| Thanksgiving blessings from Marijke |
Better late than never. We had much to be thankfull for this Thanksgiving:
The girls spent the time home and we ate, laughed, ate, had lots of friends around, ate and gave Alex megadoses of love and attention.
We are also thankfull for Alex's caretaker Eugene, who makes us think we won the lottery from heaven. He is cool, enjoys all kinds of music, takes Alex for walks, is a great advocate for our boy, and provides loving care.
To all the wonderfull nurses who took care of our boy for so long and who made our lives in the hospitals so bearable.
And my colleagues who encouraged me to take flex leave to get our lives on track.
Then there are our friends and neighbors who continue to support us in anything from running Price Club errands, building ramps, rewiring the house, to managing all of Alex's supplies with several agencies. And to you who write us regularly with your uplifting messages and prayers. You keep us strong.
For Alex's friends who continue to write and pray for him and stop by to visit. Thank you beautifull girls for your nice presents from Germany. You are ALWAYS welcome to visit.
And to our dear boy, Alex, who is once again at home with us. We now continue our lives with our new routines; Alex is much more relaxed on Midvale. We're almost always home, so come visit.
We pray, sing, message, oil, play music for Alex to leave his coma and on to healing. That is our Holiday and everyday prayer.
Friday, December 1, 2000 -- 09:39 a.m.
For the last week we've been visited from San Fransisco by David (Alex's Godfather and Dan's best friend from junior high school) Laura and Leah. We just uploaded some images of the walks they took with Alex. They were joined by Raven, Eugene's 3 year old girl. The girls are real beauties, don't you think?
Last Friday we had some excitement. Alex's stomach tube (for feeding him) fell out at 3:30 AM and we freaked out thinking it was serious so we called the doctor (and David is also an MD) and were assured that it was no big deal and could wait until the morning. They don't last but a few months and have to be replaced. What none of us knew is that the hole closes very fast - completely in 24 hours!! By the time we got an appointment to replace it at 1:30 PM the expert nurse-practicioner couldn't get the original size in and had to put in a baby sized tube. She said, "Next time that happens, get something in there right away so the hole doesn't close up any - it doesn't have to be sterile - a macaroni will do just fine."
Tuesday, November 21, 2000 -- 08:22 p.m.
A good way to judge a person is by the number and quality of their friendships. Through this ordeal we have come to realize how rich Alex is in the wide variety of people that love and respect him. Besides the usual guy buddies, Salsa has many close friends that are girls. As you can see from the new image, even now 15 months after the accident, the bonds of friendship endure. Very few of us could make the same claim.
Wednesday, November 8, 2000 -- 08:47 p.m.
Thursday was Adriana's 20th birthday so yesterday we invited a bunch of friends and celebrated it with one of Marijke's fabulous Indonesian feasts which she hadn't cooked in a long time. Adz kept us "entertained" with all the stories she hadn't told us like the one about the huge party she threw in high school while her parents were away - classic teenage stunts, right out of a movie script. But she's not a teen any more!!
Having Alex home is wonderful all the way around as we can get back to a more normal life that also includes him. We're here most of the time so stop in for a visit.
Last weekend Marijke and I took Alex for a long walk at Brookside Gardens which is in Wheaton Regional Park not far from our house. The sun was shining bright and it was absolutely beautiful - sorry I forgot to take a camera.
Monday, October 30, 2000 -- 05:33 p.m.
We have, once again, gotten very lucky. We've found Eugene (or maybe he found us). Anyway, he will be taking care of Alex while Marijke and I are at work and we couldn't be happier with the arrangement. Eugene is a seasoned professional and takes an active interest and responsibility in Alex's well being, not only physical but also spiritual. If you see him anywhere in the neighborhood when he takes Alex on his long walks, stop and have a chat - he's interesting to talk to. We've just uploaded a new image of Eugene feeding Alex.
Marijke returned today from Geneva.
Friday, October 20, 2000 -- 10:37 p.m.
It sure feels good to be home again with Alex. The neighbors have come over to build a ramp, reposition some shelves, intall a dimmer switch, rewire some plugs, and join us for Sunday morning pancakes. That evening, Alex and I went over to dinner at one neighbor and, after I put him in bed, I took the baby monitor with me across the street for a piece of pie with another neighbor.
This afternon was beautiful and we went for a long walk and wound up near Einstein High School where we heard a lot of commotion. When we went to check it out we realized that it was a field hockey game in which a bunch of Salsa's friend girls (not girl friends) were playing (and winning) their last home game. Afterwards they all came over and chilled with Alex a bit before we went home.
In all but one way this is all very positive and deffinitely a big improvement over the last 14 months in the hospital.
Marijke is in Geneva for the week.
Monday, October 16, 2000 -- 11:36 p.m.
We're all happy that Alex is finally home. This is better for everybody, especially Alex. Things are falling into place and we're on a more relaxed routine. After the initial bustle of the move, Alex is more laid back and seems to be enjoying it. The beautiful weather helps too.
I've uploaded some new pictures and more will be forthcoming in the next few days. Stop by for a visit and you might be in one of them.
Friday, October 13, 2000 -- 06:20 p.m.
This morning Alex left NRH in a whirlwind of paperwork and also hugs/tears from all the wonderful staff, especially the nurses. After more than a year there they had all become quite attached to Alex and were sad to see him go. But we're very excited to have him home.
We're also happy to have Eugene in our lives who will be Alex's main care giver.
So stop by anytime to visit.
Thursday, October 12, 2000 -- 04:39 p.m.
| This week for sure (almost) |
It looks like Alex will be coming home this week, probably Thursday. We think all the pieces are in place and tomorrow we have a big meeting at NRH to make sure. He's over his cold/ear infection and we've found a nurse to look over him so there's nothing standing in the way. Props to Judy (neighbor, experienced nurse, and Alex's second mom) who has tirelessly worked the numerous agencies involved to make it happen.
Marijke has to go for a week to Geneva on Sunday so we want to get Alex home and settled as soon as possible - stay tuned.
Tuesday, October 10, 2000 -- 07:21 p.m.
Even though Alex is quite healthy, he still goes through all the usual stuff we all do. He's had a cold (still scares the new nurses with his vigorous cough) and finally showed up with an ear infection. Not a big deal but uncomfortable, I'm sure.
We are almost certain that the long awaited homecoming will happen next week, early we hope.
Friday, October 6, 2000 -- 08:46 a.m.
Just an hour after I posted the last update, I got a call from the dog pound informing me that they had Pepita!! $55 and a good lecture (which she ignored) later she was home. Hallelujah!!! The only scary part is that she was picked up at the shopping mall accross the street where Alex had his accident. Loosing her would have been bad but if she were hit at the same spot as Alex.............
Anyway we're all happier now - just anxious to get Alex home.
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Alex's dog that has been his friend through thick and thin since he was 3 years old is missing. On Sunday she was lounging in the front yard the way she does most days and later, when I went to check on her, she was nowhere to be found. We've searched/called everywhere and put up signs but so far, no luck. And just days before she could start stimulating Alex when he comes home. What a bummer!!
Other than that things are fine - just working on the minor (though frustrating) administrative details to get Alex home, hopefully sometime this week if not next.
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| Not this Saturday - rats! |
Today everybody working on Alex at NRH plus folks representing the insurance companies and a MD state agency as well as neighbor Judy all met for what was supposed to be a "discharge meeting" for Alex's coming home this Saturday. We still have one minor bureaucratic holdup that should be cleared up in a few days so we can BRING ALEX HOME!!! It's frustrating but at least we know what needs to be done so it's not so intimidating.
They docs have been running all sorts of tests on him before he leaves and he is very healthy.
Just one request - does anyone have a baby monitor they don't need anymore that we could use to keep an ear on Alex at night?
Thursday, September 28, 2000 -- 09:04 p.m.
The reason that we haven't done any updates recently is that we are working on the many details to get ready to bring Alex home for good. Right now we are aiming for next Saturday!!
At first we were a bit frightened by the responsibility but now, with the help of friends and the hospital staff, we feel more comfortable about it. Besides this will be a much better arrangement, both for Alex as well as our family. It will be much easier for friends to stop by and visit and we can put our lives back on a more normal track. We'll still be counting on all of you out there for support though.
Sunday, September 24, 2000 -- 11:39 a.m.
Today is his official 15th birthday but we brought him home for a party yesterday and celebrated with neighbors and friends. They brought lots of cakes and cookies - enough to share with the nurses at NRH. Check out the new image of Salsa with his friends.
This was the first time he had been home in 13 months and it was very emotional for everybody. We look forward to having him home permanently by the end of the month.
Monday, September 11, 2000 -- 08:07 p.m.
| Sunday Home Visit & Birthday |
This Sunday we're going to bring Alex home from 2 to 4 PM for just a short visit. You are all welcomed to stop by to see him. Since his 15th birthday is the next day we're going to celebrate it on Sunday. Don't bring gifts but if you want to bring a cake/cookies/chips that would be fine.
Thursday, September 7, 2000 -- 08:49 a.m.
Adriana arrived from her trip this past week and then Friday morning she accompanied Nadya on her drive back to Rice University in Texas. They made it in 32 hours and Adz will fly back Monday to move to an appartment near University of Maryland. We sure will miss them - they are the best sisters/daughters in the world. Before they left we had some nice sessions with the entire family and took some pictures which just got uploaded.
Alex is doing fine - we're taking over more of the tasks of caring for him in preparation for his homecoming in a few weeks.
Sunday, August 27, 2000 -- 06:42 p.m.
We have some new images of Alex up. The first is one of him with a cast on his arm that all his friends signed. The next is one of the physical therapists showing us how to easily transfer him into our car. We also included a shot of some of the many folks that joined us for the one year gathering. Because it was outside in the dark, this was the only shot which came out.
Alex is doing well - no change. We're still going crazy with the details (insurance, equipment, nurses, therapists, etc etc) necessary to bring him home some time late in September.
Adriana travels have taken her to Beirut but she'll return here on Monday and then will drive down to Texas with Nadya on Saturday before flying back the following Monday to start again at U of MD.
Friday, August 18, 2000 -- 05:55 p.m.
Thanks to all the dear neighbors and friends who showed up last night to our home as well as all those who lit a candle, said a prayer or otherwise joined us long distance in remembering the ups and downs of the last 12 months. This community has kept us and Alex moving forward and we can't thank all of you enough.
We were expecially pleased that so many of Salsa's friends showed up and stuck around afterwards to reminded us of his wonderful qualities that make so many of his peers love and repect him for all the right reasons. They assured us that at Sligo Middle School he was a peace maker and everybody liked him, including, remarkably, the teachers. He was not at all arrogant about his popularity and never "dissed" anyone. They also told us the stories of the many pranks he played (my personal favorite is surrepticiously dropping vegetables into the principal's pockets). Most parents seldom get such an intimate window into the lives of their teens.
--
As you all know, August 9th is the one year anniversary. Several folks have told us that they wanted to have a gathering to reflect on Alex and the past 12 months. It will be a very simple affair with a few prayers and folks just saying what's on their minds. So anyone who wants to join us is welcomed at 8 PM at our house (11112 Midvale). Those of you who are out of town or can't make it can add your input wherever you are, however you prefer, at that time.
Alex is doing fine with all his old friends at NRH. The only difference now is that the family is paying closer attention to all the procedures since we will be in charge when he comes home. We will get somebody to help us during the day but this will be largely (gulp) our responsibility. Of course Alex will be easier to visit once he's home.
Sunday, August 6, 2000 -- 06:02 p.m.
Alex is back among friends at NRH (in room 304 - phone 202-877-1330). He's already had a bunch of visitors this weekend and is sporting two new Rage Against the Machine T-shirts.
The trip back was smooth, for Alex anyway. I was a nervous wreck. I travel all over the world with my computer in a backpack and have never misplaced it but both going and coming I temporarily forgot it at the airport (duh!).
Now we're going to take the next month or so to get ready for the long haul and bring Alex back home.
August 9 is going to be the one year anniversary and we're planning some sort of simple gathering here at our home that evening around 8 PM. You're all invited. Stay tuned for details.
Sunday, July 30, 2000 -- 08:51 p.m.
| Alex coming home tomorrow |
We're all excited about returning to DC tomorrow even though we have to get up real early. Today we had a parade of folks coming through to say goodby to Alex - doctors, nurses, therapists, his Godfather, Dan's high school & college friends, family etc etc etc.
On the downside Alex's last Rappaport test came in at a very disappointing 26!!
Tomorrow is going to be very hectic and Alex is going to arrive at NRH tired and hungry so perhaps it would be best to delay any visits until Wednesday.
Monday, July 24, 2000 -- 11:10 p.m.
Alex has developed a couple of tricks that are pretty effective a scaring everybody new that begins working on him. The first is a vigorous cough that he will let loose sometimes when he's sound asleep and lying peacefully. All of the sudden his knees and head pop up and, if he's near the edge of the bed, he is liable to spring right off. He's bumped his head on the railing several times this way. The other one is just holding his breath for no reason. The nurse/therapist will bang on his chest and yell "Alex, breath!!" and when he's ready, he will (way before he stops being a healthy pink). Just Alex's way of keeping all of us on our toes.
It's HOT here - near 100 degrees and also near 100% humidity. We take our walks in the late afternoon about 6:30 PM when things start to cool down a bit and we have a nice sea breeze.
Friday, July 21, 2000 -- 05:32 p.m.
You know how Alex loves Mexican food, right? Well here in Galveston they have a Tex-Mex restaurant called "Salsas" and I went there for lunch. I tried to buy a T-shirt from a waiter but they only had mediums left and I know Alex would consider anything smaller than X-large very uncool - but they are getting a new batch in a week or two and my high school friend is going to pick one up and mail it to us.
Today we dove solo - the other fellow in the hyperbaric chamber couldn't clear his ears so he left and we were in all alone with the technician. It's the closest either one of us has been to a chauffer driven limousine.
Everybody in the hospital has been dropping by and raving about how amazed they were with Adriana. She really deserves props for been so cheerful about spending most of her summer vacation taking care of her little bro. The down part is that the docs that have been stopping by are not very encouraging about Alex.
Tuesday, July 18, 2000 -- 05:33 p.m.
What a coincidence. Today when I took Alex to hyperbarics the only other patient that dived with us had the same last name!! (Actually he spells it "Salcido"). We went down to 60 ft.
The good news is that Alex has his new ($5000!!!) wheel chair. He looks just great except, believe it or not, he is developing a little gut. The bad news is that his Rappaport scores are going back up, which has everybody baffled. One therapist thought he's just doing it to be difficult. Wouldn't surprise me.
Monday, July 17, 2000 -- 04:57 p.m.
Last week brought us into the 12th month of this saga. Alex is doing well with his sister, Adz, who leaves Galveston as I arrive this evening. She has been great and made many friends in the hospital. Yesterday the therapists and nurses baked her a cake and threw a party for her.
Alex dove to 60 feet this week. Thsnks to all of Salsa's friends who have been posting messages and are looking forward to his return to NRH on the 25th.
Friday, July 14, 2000 -- 08:23 a.m.
Alex spent this afternoon with both Adz and mom after Adz returned from 3 days of being spoiled by Oma and Opa. Adz has star fame here for being the MOST loving and caring sister most folks have ever known. She's been here since Mother's day!!
The week has been hectic getting into the routine of a new hyperbaric schedule, doing an EEG and meeting with docs re MRI results. The MRI results remain the worst case scenario with lots of dispersed scarring due to the injuries and some major damage on the right and center brain. These are permanent, but the neuroradiologist and the pediatric neurologist don't know the prognosis, given the brain's enormous plasticity and ability to regenerate connections. So we keep working, stimulating, playing music, singing, reading, loving, talking to our boy waiting for that great day when he will respond. Keep your prayers up for that day!
The 40 ft dives do get a reaction out of Alex. They wear him out and he returns flushed and with increased heart rate. Hopefully they'll affect his brain as well. We keep our hopes up. We sure have seen some amazing affects on our fellow divers.
For the 4th of July Alex and Mom went for a beach walk and it was a madhouse. Alex loved the music - rock, headbanger, rap, latino - blasting out of a steady line of cruising and parked cars. Lotsa gorgeous folks in all shapes and colors celebrating Independence day. Alex was so relaxed during this walk.
It's mighty HOT here so we save the walks for after 6PM and then we have to hoof it to keep the mosquitoes from eating us up. We can't linger in the rose garden anymore since it has turned into sucking zone for these lil critters.
Mom's off to Costa Rica on Sunday, Adz will take charge until the 14th, when Dan comes down to spend the last leg of Alex's stay in Galveston. On the 25th of July Alex and Dan will be homeward bound, to NRH for a while, and then to Midvale.
We read your messages to Alex, or tell him about them, so please keep them coming. Also the prayers and vibes.
Saturday, July 8, 2000 -- 11:43 a.m.
This morning Marijke and I got up real early to take her to Baltimore for her 6:30 flight to Texas. The flight was over booked so she volunteered to go one the next flight, 2 hours later, in exchange for a free ticket which will get Nadya home for Thanksgiving. She is happy to be there (as I'm sure is Alex) after a six week separation which seems like an eternity.
Tomorrow, all of Marijke's siblings (and assorted nieces) will converge on the Velzeboer household in Houston to celebrate Opa's 80th birthday (a little early).
I'll be holding down the fort here and continuing with the fun and games of dealing with the insurance companies, hospitals, airlines, etc etc etc etc - hey, but it's all worth it - Alex is coming home later this month.
Saturday, July 1, 2000 -- 05:56 p.m.
| If a little is good, more is better |
Alex started on his last series of 20 "dives" and they decided that instead of taking him to the equivalent pressure of 16 feet underwater for 60 minutes, they're going for 40 feet for 90 minutes. This will ensure maximum oxygen saturation for brain healing.
Adz is doing great but will be relieved to be able to sleep in late for a week while Marijke stops in. For teh rest, all is well - just getting things ready for Alex's return to DC.
Thursday, June 29, 2000 -- 08:50 a.m.
| First shower in 10 months |
Today Adz and the nurses transferred Alex into a waterproof wheelchair and gave him a good shower. He was tense while they were moving him around because he didn't know what was going on. Once they turned on the water he relaxed and enjoyed it.
My cousin Julian from Colombia is visiting in Galveston with his wife and daughter.
Our family is all over the map this summer but we finally have some firm dates for who's going where/when:
- Marijke will go to Galveston on July 1 and then on to Costa Rica on July 9, returning to DC on July 15
- Adz will return to DC on the 16th and leave for Europe on the 24th
- Nadya will return from Mozambique on the 20th
- Dan will go to Galveston on the 15th and return to DC with Alex on the 25th and go straight to NRH
Friday, June 23, 2000 -- 06:53 p.m.
Since the 80 "dives" were approved we can now plan Alex's return to MD. Marijke will stop off for a week July 1-9 on the way to Costa Rica and I will go down on about July 17. Adz will come back and get ready to go on her well earned trip to Italy and Spain. I'll bring Alex home on the 24th or 25th. He will go back to NRH for about a month so we can get everything ready to bring him home at the end of August.
Adz and Alex are in a routine in Galveston of therapies and walks and visits with friends. All is going smooth.
Yesterday's Father's Day was a bit sad without any of my kids here but we're very happy and proud of them all.
Monday, June 19, 2000 -- 07:21 a.m.
Last Friday marked the 10 month anniversary of the accident. How time flies even when you're not having fun.
Alex has been moving a little slow because of a fever but he seems to be over it now and is more alert. We have been approved for the full 80 "dives" so he'll be in Galveston untill the middle/end of July.
Please keep up the prayers and positive thoughts.
--
Don't have an image of it but on Sunday the therapist and I sat Alex on a mat and turned him to the right and placed his elbows on a raised mat and he supported his weight and held his head up all by himself for about two minutes without anybody touching him!!
Thanks to all his friends for the continued postings. They are a help to both Salsa and his family.
Wednesday, June 7, 2000 -- 08:20 a.m.
I'm happy to be in Galveston spending 4 days with Alex. He is moving more than last time I was here and still responding to sounds, touches, etc. Adriana has done a fantastic job of keeping im stimulated and loved on. It's good that she's getting a few days break and getting to sleep in.
Yesterday Alex and I took a very long walk on the seawall. It was sunny, breezy, and not too hot. We had a good time. A funny thing happened on the way back. I stopped off to visit a friend from junior high school and just as we wheeled up his driveway, Alex's right wheel locked up. As it turns out my friend's family owns the main bicycle shop in Galveston and he has all kinds of tools that we used to fix the chair. It was just a bolt that had worked its way lose but we sure were lucky that this happened where it did and not way out on East Beach where we had been walking just before!!
Alex's left eye was a bit puffy from the encounter with the bed railing last Wednesday but it's practically back to normal today. He looks great actually - has some color on his face, arms and legs from the outings.
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Tomorrow morning (very early) I'm going to fly down for a 4 day weekend with Alex and to give Adriana some time off (she deserves it). Alex is doing good. He turned his head toward a baby that was crying and the night nurse wrote down that he was saying something like, "Mama". All very exciting.
The only bad news is that he coughed so vigorously he bumped his cheek on the bed railing and has a small bruise. Oh well, that's life, even in a hospital. After all he's been through, that's not such a big deal.
Thursday, June 1, 2000 -- 09:04 p.m.
A bunch of Salsa's friends stopped by yesterday on their way to the rock festival that has been a centerpiece of his social life for the last few years. Several of his favorite bands including Rage Against the Machine were featured this year. Everybody knows how important this event is for Alex and so they all rallied together in solidarity. Alex/Salsa appreciates it.
It's really hot in Galveston so Adz has been taking him out later in the afternoon. Today they were going to go on the ferry that is close to UTMB.
A couple of new images show Marijke visiting with Alex during a walk on the sea wall and another shows his huge (and frequent) yawns, followed by, "nia,nia,nia,nia,nia,nia...."
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| Pictures of Alex & Marijke |
Alex is now drinking Pepsi (thickened) when it is dripped into his mouth with a straw. This is good because he is handling more liquidy substances which tells he's getting better and safer at swallowing.
Adz continues to be at his side and has even cut way back on her partying. What amazing sisters Alex has!!
Today we uploaded a couple of new images that show Alex's face and how he's looking good. Another shot is one of his favorite places, the rosa garden at UTMB, where Marijke spent many hours talking to him.
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Alex's Rappaport Coma test scores continue to improve. Today he was at a 16 (or a 14 depending on how they interpreted one section)- steady, documented progress - that's what we want to keep seeing. 28,24,22,20,18,16, (14?) - not bad for 8 weeks.
I'm going down next weekend (June 2-5) so if Salsa's friends want to send some music or an HFS poster or anything else I can take it.
Yesterday the wierdest thing happened. When I got back from taking Marijke to the airport, our dog Pepita wasn't around. I thought she had just spent the night next door with the PEOPLink interns, like she sometimes does. However today I had to go to Connecticut real early and I couldn't find her. She didn't show up all day and had everybody in the neighborhood quite alarmed. This evening we got a call from the dog pound in Washington DC, a long way from our house but not too far from NRH. We have no idea how she wound up there but I'll go pick her up tomorrow. When we got Pepita as a puppy in the Dominican Republic, she really helped Alex get past a difficult stage before he learned Spanish or made any friends. We are counting on her affection again to stimulate Alex when he comes home. The thought of loosing her at this point had me plenty worried. But this was a false alarm.
Monday, May 22, 2000 -- 09:53 p.m.
The Salcedo-Velzeboer fam is all over the map. Alex and Adz in Texas, Nadya in Mozambique (interning for two months with the World Food Program), Marijke winging her way to Chile for 3 days, and Dan holding the fort down.
Alex had a good weekend. Adz reports that he is moving more and more and even the hyperbaric technician noticed that he seemed to be trying to respond to her.
Sunday, May 21, 2000 -- 08:07 p.m.
| Alex holding his head up!!! |
Today the therapists stood Alex up like they do most days and he held his head up for 2 minutes, completely unassisted!!! This is a first and indicates that his sense of bodily orientation is improving which is another response to his environment.
Yesterday Adriana peeled an orange under his nose and he raised his hand up to his face in reaction. She's working him hard in between trying to finish off two final exams to wrap up her semester.
--
Alex continues to improve not only in the eyes of his family but in the tests administered by the experts. Every week the Occupational and Physical Therapy team administers a "Rappaport Coma Test". Alex was at 28 the first time they ran it when we arrived in Galveston and then he progressed to 24, 22, and last week to 20 (the lower the better). Just got an e-mail reporting this week's score of 18!!!. We understand that these things take time and that what we all look for is sustained progress - which is exactly what we're seeing. The aggressive OT/PT & hyperbarics coupled with lots of love from his mom and all our friends out there are moving things forward.
Marijke arrived last night after being stuck in the Chicago airport for 5 hours (ugh). She is exhausted and I'm letting her sleep in this morning (in fact she still hasn't heard the good news).
One minor down note is that Alex did vomit yesterday for the first time on a long time. But the good news is that he's beyond the risk of aspiration (breathing it in) so it's not such a big deal. Just a bug going around as we all experience every now and then.
Tuesday, May 16, 2000 -- 09:24 a.m.
Three weeks flew by for Mom in Galveston, and Adz flew over yesterday (Saturday) to take over guiding Alex back into the conscious world. And is he ready to have his mama out of his face after 3 weeks of obsessive love, complaints about his music, Mozart, too much order, old lady gossip, email
sounds, etc. Adz will be a nice relief. She'll work her bro as hard as Mom, but the music will be better and she's more fun! .
Today we celebrated mother's day by letting Alex sleep late, and doing lunch with Abuela. Last night we celebrated over a tasty diner with Opa, Oma and Kees. All that good eating while Alex chows down on fruity mushes, frozen
pudding, mashed potatoes and blended Applejacks (his favorite cereal). He's getting into moving the food around his mouth and swallowing lustily. During my 3 weeks here he did not once aspirate (= food going down the wrong hole) .We keep tempting him to improve so he can drink milk from the gallon jug, and eat pizzas, candy and arroz con curry.
Adz came into our Galveston scene while we were at the rose garden. She immediately noticed the changes in her dear brother: more alert, more relaxed, eating, mouth movements, conscious arm and leg movements, both eyes open, turning head to her, etc. She was happy to be with her bro after 7 weeks and Alex was even more happy about the changing shifts.
So the hyperbaric treatments continue and we are actively lobbying for another 20, especially with a documented success record. That'll put us through end of June. We do believe, as do the nurses, that the hyperbarics, zinc, Reike, therapy, loving care and prayers are moving Alex towards consciousness. We are keeping them all up. All you friends and loved ones, please keep up the prayers and vibes. I leave here at peace with Alex's progress, support and Adz in charge. I am also grateful to our wonderful support network here that will continue for Adz and Alex. Thank all, especially Alex and Adz.
Sunday, May 14, 2000 -- 09:07 p.m.
Today Marijke stayed one extra day to be with Alex for Mother's Day, as well she should have. She's been working very hard with Alex to get him to respond more. Nothing is more powerful than a mother's love.
Yesterday Adriana arrived in Galveston after a canceled flight in DC and getting stuck for 5 hours in the Atlanta airport - all after cramming a summer's worth of partying into 3 days. Marijke's sister and her parents and brother also went down for a family gathering.
Today Marijke and Adz took my mother out for Mother's Day brunch and Nadya and I went to the Million Mom March. So we hope that Alex felt all that focused mothers' energy and continues to heal.
Sunday, May 14, 2000 -- 07:37 p.m.
Yesterday marked the 9 month anniversary of the day that everything changed. Can you believe that this baby is taking so long to deliver? Alex, as usual, is taking his sweet time - doing things at his own pace. But he continues to improve and we are still hopeful.
We are also very grateful for all the support from Midvale, DC area, Texas and the rest of the world. We love you for loving Alex.
Wednesday, May 10, 2000 -- 06:58 a.m.
Can you imagine Alex spending all his days being poked at, stretched, rolled, fed, stuck, cleaned by adult women? He has not chilled with kids since he left NRH, and I know he misses his friends. I sometimes find him shutting his eyes on purpose when he is tired of being messed with by another "old" woman (over 18).
So Alex's friends, can you do Alex a favor and send (give or lend) favorite CDs so we can play them for him. He would love some of the new tunes y'all listen to. You know what he likes, we really don't. Adz is coming down on Saturday (5/13) to be with Alex for the rest of the month. You can give them or anything else to her before Friday or you can send to abuela/grandma (2920 Pine Street, Galveston, TX 77551).
Saturday and Sunday are recuperation days from a busy week of therapies, hyperbarics and hospital routines. Alex sleeps late, has only one therapy, a visit from grandfolks and friends, we take a walk to the beach, and Casey, the REIKE healer gives him two hours of healing energy. The sea was kinda rough so we did not see the 14 skiing frogs, and thanx to mom's incomplete sunscreening Alex has a red ring around his collar. During the week the therapies drain him and he sleeps much of the time in between. He does stay awake for our afternoon head exercises in the rose garden where we do occasionally see some very strange polka dotted birds. I'm sure the lazy moments are the healing times.
And while Alex is taking his healing moments and mom tries to catch up on e-mails and work, dad, the girls and the Midvale neighbors have knocked down walls and painted others to make a beautiful space for Alex when he comes home. We're aiming for lots more hyperbaric treatments, but our days in Texas are numbered. Thanx , Midvale!!
Alex is eating well, moving his legs a lot, but not enough to keep skinny. He is filling out with the yummie tube liquids, frozen fruit and vanilla pudding, but is also metamorphizing into a man's body. He weighs 154lbs and is becoming hard to lift, especialy since we guess that he's about 6 feet 2 inches long. He sure towers over everyone here when they stand him up.
Tia Betsy sent Alex a headset cordless telephone so that he can be plugged in in comfort (409 722 6812), he received a fluffy handmade blue blanket from a Linus Lady of Forrest Hill, MD, and a very stuffed goodie basket from a cute patient's grandma. People are so amazing for us. Wherever we go the networks stretch to support us. Thank you friends for these kind acts, your prayers, messages, lunches, hospitality, generosity and love.
A special thanx to all of Alex's wonderful nurses. It's national nurses week; please hug a nurse and thank them for Alex.
Tuesday, May 9, 2000 -- 06:54 a.m.
Every Monday, the folks at UTMB give Alex the Rappaport Coma Test to see how he's coming along. They do a bunch of stuff like pinching him, tapping his shoulder, ringing a bell, putting amonia under his nose, giving him instructions to follow, etc. Today he scored the best he ever has, which is documentation that he continues to improve. Hooray!!!
Also we had a glitch with the messages on the Web site this weekend. Greg fixed it so you can post again and in a couple of days we'll put the old messages back up.
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| For Salsa's friends in MD |
One thing Alex doesn't have in Texas is anybody his age to hang with. So the next best thing would be for his friends to put together a casette of your voices that we can play for him. Doesn't have to be complicated. His sister Adriana will go to Texas this Saturday so if you can deliver something to her on Friday she'll take it. Cards and fotos to put on his walls would also be good.
Thanx.
Monday, May 8, 2000 -- 10:18 a.m.
Today we uploaded some more images. The first is Alex on a pier that goes about 100 ft into the Gulf of Mexico. The wind blowing, waves crashing, salt spraying, and birds sqwaking just have to be reaching him.
The second image is of Alex eating his apple sauce. Yummmm!!
The folks at UTMB take good care of him, even though he doesn't always like them messin' with him all the time.
He's up to 154 pounds which is 10 more than before the accident. This isn't surprising with him eating and growing.
Tuesday, May 2, 2000 -- 06:54 p.m.
Today was a good day. It started with a beach walk with lots of wind, blowing sand, salty and seaweed smells, crashing waves off the pier, and a ruined wheel chair (sand got in the gear and messed up the tilt mechanism).
With my help, Alex moved both his arms up and down at the elbow very consciously. He's also beginning to for his legs. Once I bend it he moves each leg towards his body and then out…with my guidance. What is great is that he is making these moves very consciously.
Also he is really using his mouth and tongue much more. He's eating 2 good sized jars a day of frozen fruit puree and pudding, and moves the food from the front of his mouth to the back, to gulp it down in a flash. Even when he's not eating he's moving his tongue and lips more and is beginning to make interesting sounds.
There's a difference and he's making it!
The prayers, caring nursing (Children's, NRH, UTMB); the docs; the dogs; aggressive therapy; calls, messages and visits from friends (mom's 3 soccer buddies from college days of her youth showed up), hyperbaric therapy, in-your-face-therapy from dad/mom/nad/adz, reike are all making a difference.
Go Alex, go! Adelante, Salsa!!
--
This time in the negative sense, although a beautiful doggie "Shadow" did strut her stuff to Alex today and even got some pets in. By the way, scratch the dog therapist aspirations, all doggie owners volunteer their and their canine's time.
The dog day started with stuff dripping out of Alex's ear, which was diagnosed as a nasty ear infection. Worst case scenarios about loosing his eartube within the ear channel and not being able to dive drove me to tears. The Ear, Nose, and Throat doc checked him, declared it nothing serious, prescribed more antibiotics and declared him ready to dive.
While Alex dived, I had a meeting with his care team. All are on board on extending his stay and increasing his dives. They agree that he's doing well and are happy with his progress. Now we have to convince the insurance companies!
Alex stood up today, for the first time cooperating with the 3 therapists that held him up. Today and yesterday he held his head up for a moment. He loves pudding and frozen peaches and eats whole jars of it. He's able to move these delicacies from the front of his mouth to the back. His tensed arm is now relaxed, after 18 botox shots and lots of family and therapist work. So the dog day that started as a nasty, junk yard dog ended more like a warm puppy.
And we have another Texas REIKE healer in his life. The Galveston support network remains activated, with daily lunches with Phil and friends, flowers, loving care by Tom and Sandy, visits from family (all 3 grandparents) and friends, calls from friends back home (thanx Chris and Robert, Alex enjoyed your message), cards, wonderful care of the UTMB clan. I even ventured across the street to take in a talk by Molly Ivens about Texas women in Washington. She recharged my battery!
Keep all the love/prayers/thoughts/cards/calls/messages coming!
Sunday, April 30, 2000 -- 04:00 p.m.
Dog therapy - now here's a profession you've never heard of! Well today the 5th floor of UTMB Children's Hospital crawled with 4 legged friends all out to lick and snuggle the kiddos. Little softhaired Foxy Lady sat on Alex's wheelchair table, rubbing against his chest while the animal therapists took Alex's hand to pet Foxy and to be licked. Alex moved his mouth a lot, like he does when he likes something.
My 3rd full day here, and the days are FULL. After the intensive therapies, hyperbaric and eating sessions, both Alex and I are wiped out. And they work him hard, on balls and rolls and standing tables. I also went into two dives, with all the other moms and kids. Today we were 4 patients and 3 parents. The kiddos sit like spacemen with plastic bubbles over their heads with attached hoses. The parents sit and pop their ears as they go down. There is camaraderie and also video movies.
Then we take walks: to the beach, the harbor, through the oleander shaded streets lined with funky Victorian homes, and to our favorite rose garden. The weather is still bearable, but the humid heat is around the corner. Alex is getting quite a tan. We also sneak in some eats, applesauce, mango, peaches and pears.
And we have networks here too. My family, friends from Houston and Dan's mom regularly visit. The folks who rustled Alex into hyperbaric, have allotted a space in their beautiful Casa Caracol to the Salcedo clan. Dan's old high school friend has drummed up all their old cronies to lunch with us. We know all the good places in town. One of the foremost researchers on nutrition and brain injury, a personal connection, is putting Alex on zinc. Zinc is known to play role in neurological connections. And we are even lining up a reike healer.
We are still trying to regulate Alex's sleep patterns. Sunday and Monday he woke up well into the afternoon, to the frustration of the therapists. In the morning he was a noodle man through all acts and had no interest in eating. Tonight I'm camping out at the hospital to check out his sleep.
We are all delighted about how nice and competent the folks here are, though we do miss those NRH mamas (and meals). Well that was the first yeeehaaw from Mom in Texas. Keep your prayers, good vibes and messages up, we still have long road ahead.
PS SALSA'S FRIENDS, you can call Alex at 409 772 6812 so he can hear your voices, or leave a message on the machine. We keep reading him your messages. We love you for hanging with our boy!!!
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Today was Alex's 18th dive in this first series of 40. I uploaded a couple of new images. The first shows the technicians wheeling Alex into the chamber and the second shows the them controling the "dive". You can see the blue rubber collar with the plastic ring onto which they connect a plastic bubble into which they pipe in 100% oxygen. This, with the pressure equal to being 16.5 feet underwater, drives extra oxygen to the deepest part of Alex's brain which still needs to heal for him to wake up.
Today was a sleepy day for Alex. I guess he realized this was the last day of spring break for his friends in Maryland so he did what any good teen will do when given a chance - sleep all day. In the Rappaport Coma test they give him every Monday he did react to a strong amonia smell for the first time today.
Marijke already made it to the beach with Alex yesterday and is settling into the routine at UTMB. Feel free to call them at 409-772-6812.
Monday, April 24, 2000 -- 09:06 p.m.
Those occupational and physical therapists are tough operators as you can see from the new images. First they strap Alex to a tilt-board and for vertical torture. (They did give him a break and wheeled him around the halls so that he could approximate skateboarding.)
Then, with a series of botox shots, serial casts, and this professional lady arm wrestler they managed to get his left wrist completely relaxed and even able to bend it back some. I didn't think that this would happen so quickly but....
Finally they showed me how one person can pick up and transfer a patient to/from a wheelchair to/from a bed. They claimed to be educating me on the proper procedure but I know that they were really trying to intimidate me to not cross them.
However all that stimulation seems to be working. This week when they tested his alertness with the Rappaport test, Alex again showed improvement and went up to the next category.
Marijke and Nadya swap places tomorrow.
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Today I uploaded some new images of Alex and all the treatments he's getting at UTMB. The first is occupational and physical therapists exercizing him by bouncing on a big red rubber ball. I don't know how they don't drop their patients but they assure me they haven't lost one yet.
Alex's left arm that had been so tightly cocked is now almost "neutral" thanks to a series of casts that they put on him plus the 18 botox shots that relax the muscles.
The docs have run a bunch of tests on Alex's eyes and at first worried us that he might have some major optic nerve damage but, as it turns out, that one is fine. His "third nerve" has been affected which means that he might have to wear sunglasses and reading glasses. As long as we can get him some cool shades, this is one that we can live with, right?
Nadya is doing fine looking over her bro and will be replaced by Marijke this weekend.
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Hi everyone, this is Nadya...Just a quick update. Alex is over his cold...He ate a full jar of applesauce again. His left hand is at neutral right now, after a series of serial casts. This means that it isn't as tense and cocked as it was. He is turning his head more when his name is called, to both the right and the left. That's all for now. Keep those good vibes comin'. Nadya
Saturday, April 15, 2000 -- 08:55 p.m.
Yesterday Nadya took over with Alex in Galveston. He's a bit under the weather with a cold but otherwise fine. Nad is settling into the routine of the therapy and the other many details. She's a real trooper since this is not the easiest assignment in the world. You can call them both at 409-772-6812 to let them know you're thinking of them.
Wednesday, April 12, 2000 -- 10:50 p.m.
Yesterday Nadya took over with Alex in Galveston. He's a bit under the weather with a cold but otherwise fine. Nad is settling into the routine of the therapy and the other many details. She's a real trooper since this is not the easiest assignment in the world. You can call them both at 409-772-6812 to let them know you're thinking of them.
Wednesday, April 12, 2000 -- 10:50 p.m.
What a trip these 8 months have been! Alex is now in Galveston and we're all moving forward. Today, for the first time, he ate a full jar of almost frozen peach sauce. Yesterday we went for a long walk on the beach and he even managed to get his legs a bit sunburned. His Aunt Pat (the bee lady) and cousin Jennifer (+ boyfriend) came to visit today.
Tomorrow evening I'll leave Galveston to pick up Nadya who will replace me here on Tuesday morning. Any of you who want to visit are welcomed at any time (Room #5322 of UTMB's Children's Hospital, 9th and Market). (Next weekend is not a good time - it's Beach Week when the island gets taken over by rowdy college partiers.)
We have an answering machine in Alex's room with a speaker phone so he can hear when you call him even if we're not there (409-772-6812). We play his messages to him several times so he can keep up to date with his buds and fam. If you want to mail something to him please do it c/o Dorcia Salcedo, 2920 Pine, Galveston TX 77551.
Sunday, April 9, 2000 -- 05:44 p.m.
Today they cancelled Alex's hyperbarics because they had an emergency case, still on a ventilator, and they needed to fill the chamber with nurses/technicians. So we took the unexpected free time off to wheel/walk 10 blocks up to the seawall. We strolled along the "boulevard" and went out on a pier. The waves were crashing, wind blowing, birds shrieking, and the sun was shining brightly. I'll post an image next week.
Alex is reacting to more, smaller sounds. For example, today when his grandmother put her keys in her purse, the sound of the tiny snap made him open his eyes wide and turn his head.
Friday, April 7, 2000 -- 08:25 p.m.
The folks at UTMB have kept Alex and me very busy. He has physical/occupational therapy at 9, speech therapy at 11, PT/OT again at 1, and hyperbarics at 3. By the time we get back we're both pooped. And in between there's always other stuff going on. For example today Alex got another round of botox shots (18 to be exact - very aggressive - we like that). Yesterday they tested his optic (and auditory) nerves by gluing electrodes all over his head and then putting on special goggles with blinking red lights (and earphones making wierd clicks) and then measuring his brain waves in response. The technician told us the doctor would have to read the results but that his initial impression was that the nerves were OK.
And the network of support is growing here in Galveston. Besides my mother, we have long time friends, Tom and Sandy, who provide nourishment and entertainment to keep me from stressing out. High school and Pueblo to People buddies have also weighed in with meals, a bicycle, chain and just general good will. Today one of my earliest friends in Galveston (actually I had a crush on her in junior high school) offered to lend me a car with a parking space thrown in. This morning, one of the mothers with another child in for treatment, remembered me from when we were kids growing up in the same neighborhood 35 years ago!!
Will post new images in the next day or two.
Wednesday, April 5, 2000 -- 08:15 p.m.
Perhaps the folks at UTMB are taking their cues from their boss, the governor, on the "compassionate" bit but "competents" is a better way to end the phrase describing them. Believe it or not, we have a lot of fun in therapies but, at the same time, these are very serious work sessions. For example, of the three folks that I described last time as "physical therapists", two are actually occupational therapists and this morning, when we couldn't wake Alex up enough for therapy, they joked about him being a lazy teenager, wet noodle, etc, etc, but also took advantage of the opportunity to quickly whip a "serial cast" on his left arm to begin working out the tightness.
The same goes for the hyperbaric therapy folks. Yesterday, when a mother showed up with her two year old after the dive had begun, one of the therapists took the child in through another "emergency" entrance and held her in the chamber while she cried for almost the entire hour. He didn't have to do it - but decided to go for it anyway.
We continue to be excited about Alex's progress. He is reacting to more, smaller noises. Today I dropped a tiny plastic medicine cup, not much bigger than a thimble, and he opened his eyes wide and turned toward the sound.
Alex is eating more vigorously (and sloppily). Tomorrow the speech therapist will probably allow me to do a second afternoon feeding by myself. Any suggestions on what I should give him?
Today (yesterday actually) is Nadya's 21st birthday - sorry your bro and dad weren't there to celebrate it with you, sweetheart.
Tuesday, April 4, 2000 -- 12:42 a.m.
| Saturday in Galveston Isle |
Today was a slow day. Alex had some physical and speech therapy. They stood him up on a tilt table and the therapist had to get on a stool to work with his head. He's still eating green beans and pear sauce.
This morning Marijke's parents and brother came and we had a picnic lunch with Alex in a nice rose garden here at UTMB. In the afternoon we took a long stroll (about 12 blocks) to the Strand which is a tourist area with nice shops and restaurants. All in all a nice, relaxed day.
Saturday, April 1, 2000 -- 05:50 p.m.
By now many of you have seen the images that we posted today but a bit more explanation is in order. The flight (first class, thanx to neighbor Mike) from Baltimore to Houston was comfortable - Alex slept and snored loudly the whole way. We arrived to UTMB and my mother and Marijke's parents were there to greet us and we hustled Alex into his room which still needs to be decorated.
The biggest new thing that he's doing new is eating more and more very day. He's really getting the whole process down and, with practice, they'll be able to give him more different stuff. Today he had a full meal - apple (sauce) as an appetizer, green beans as the main course, and chocolate pudding for dessert.
The therapists are working him hard and they aren't even letting him have a day off for the weekend. Twice a day three physical terrorists attack him and force him show them his many moves. They're all sweaty when it's over (from emotion I'm sure) and very encouraged that he handles it so well and does not seem to get tired at all.
And I've got wheels! Today a friend lent me a bicycle but the therapists didn't let me use it untill I went out and bought a helmet. Tomorrow the Velzeboers will deliver a car - so Galveston, watch out - here we come.
Friday, March 31, 2000 -- 09:16 p.m.
| Modified barium swallowing test |
Sounds terrible but it was great! Yesterday the speech therapist took Alex to a high tech X-ray facility where they fed him apple sauce with radioactive barium in it. Then we all watched his head from the side on an X-ray video screen to see if/how he would swallow. After almost 8 months with no food in his mouth, he was a bit uncoordinated on getting the sauce to the back of his throat but once it was there he gulped it down quite briskly, without any hint of going down the wrong tube. This means that they can feed him a bit every day during therapy for now and when he gets a little more coordinated they will start feeding him for nutrition.
The physical therapists got him a wheelchair so we're mobile now and have started cruising the many gardens around UTMB. The beach is about 10 blocks away and we're looking for the chance to escape and check out some sunbathing babes (for therapy purposes for Alex, of course).
Alex took his second (my first) dive in the hyperbaric chamber and all was normal. Kenton, the 13 year old kid from the video (and 6 others) came with us and he was chattering the whole ride about the virtues of George W. Bush. Maybe the hyperbarics will cure him of that affliction too.
Thursday, March 30, 2000 -- 09:54 a.m.
Alex and I arrived yerterday and were met at the plane by two burly paramedics in shorts that whisked him off to a waiting ambulance for a comfortable ride to the University of Texas Medical Branch (UTMB) Children's Hospital. We've met about 463 nurses, doctors and therapists so far and 462 have been wonderful - a Texas combination of competence and friendlyness. The head of pediatric rehab reminds me of everyone's grandmother - if she had an IQ of 200.
Already the speech therapist has decided that Alex is ready to start eating and spooned a dollop of pear sauce into his mouth which he swallowed quite nicely. Tomorrow they'll do a swallowing study which consists of feeding him some mildly radioactive pudding and taking an X-ray video of him swallowing too see if it goes down the right pipe. This is a big step 'cause we've seen that, when the other patients in NRH started eating, they soon started waking up.
And most importantly, Alex took his first dive in the hyperbaric chamber today. The 13 year Kenton who was on the video, was in with him along with about 8 other folks. (I couldn't go in because there was not enought room but I'll be in tomorrow) It's too early to tell anything but his left arm, which is often cold, came out quite toasty. Tomorrow evening I'll process some of the images that I've taken and I'll try to post them to the Web site.
This was deffinitely the right move.
Tuesday, March 28, 2000 -- 11:29 p.m.
WHEW! Alex and Dan safely arrived in Galveston, after a smooth flight. A Midvale dad, Mike D, arranged first class seats, a personalized lift off and soothing of Alex's mom, dad's and Adz's nerves. Alex remained calm throughout the van ride up, the flight and the ambulance ride to Galveston.
Once in Galveston, Alex and Dan were smothered with love by all three grandparents. The docs gave Alex a meticulous every-inch-of-his-body checkout, while Dan checked out the comforts of Alex (and Dan's) private room with a view.
Packing up Alex's little NRH haven was a job. Bidding all the wonderfull nurses, therapists, docs, social worker, other NRH folks and Carlos and his parents (who showed up early)was tearfull. Missing our intense, but comfortable routine will be tough. But we have oh so high hopes for this next phase. Please keep up your prayers!
We never cease to be amazed by the inspiring support we continue to get while we all struggle with Alex's healing. Thank you again to all you wonderfull friends and family who visited, wined and dined us, arranged diners, brought flowers, gifts and too many goodies (to the point of the nurses boycotting our handouts and going on scarsdale diets), made and sent cards, created posters and drawings.
A special thanx to Salsa's friends who kept up the visits and messages through the seven months. Please keep the messages coming; we'll read them to Salsa daily.
We love all of you for strengthening all of us and for loving and praying for our precious boy. Keep it up all you wonderfull people. What would our lives be without you!
Monday, March 27, 2000 -- 09:52 p.m.