Rob received a new brace today to help give him support in walking to cross a new bridge. He took some first steps, and we are very hopeful that with a lot of practice, he will get there. Click here to see the video.
Many thanks to Dr. Sheepstra, Rob’s rehab doctor (on left) and Karsten, for his beautiful craftsmanship of the brace (on right) for their looking into possibilities and their understanding, and support.
We had a wonderful time at the Oerol theatre festival on the Dutch island of Terschelling. The atmosphere was great, and Rob could meet some of his colleagues and enjoy what he missed last year when this all happened. It was very poignant to be there and I’m really proud of Rob for doing it after such a difficult year. A week off really gave us some much needed time to just be happy together and enjoy some fun and also some rest.
It’s hard to believe that it has been a year now. Today is the day that Rob had his first surgery and our world tipped over in strange and unusual ways. Overall, although difficult, we are both enjoying life more than ever before.
It’s not all been positive. Sometimes I feel that I am in between specialists, and I have to find my ways to cope around it. It’s not easy at all. Will I walk, or can I forget about walking altogether? I have learned my way to handle specialists — have faith in yourself, almost ignore them. Go on…
Whatever the truth is, I want to find that out myself. I will find out how to cope with it, or not. It is up to me. I am butt naked in this situation, the rest is cosmetical. I have to come up with new ingredients in life, the same counts with Ellyn. She has to try to find her ways too. I am not the only stroke survivor, Ellyn is also. Together we are determined to find our way.
We both need and want to create new future history. It’s up to us, but we really like and need all of your support. We’ll get there. I have nothing more to say except:
“No eternal reward will forgive us now for wasting the dawn” — Jim Morrison
As you can read, Rob is doing well, and we are happy to be celebrating this time in a rather poetic way. Tomorrow we will be returning to the Oerol theatre festival that Rob was working at when this all started on the Dutch island of Terschelling.
We are both really looking forward to a week off. It’s incredible how busy it has been the last year, and we both really need it. Just some relaxing, without work, appointments, and the myriad of things that we need to do every day.
It has all been very overwhelming, but somehow, we are both getting through. I have to say, that is due very much to all of the great support that we have received from all of you this past year. We are both very thankful to our wonderful families and friends.
N.B. There are few posts I have put up recently that I did not send e-mail notifications for. It has been so busy here and I keep thinking that I will have some time to to do them properly, which never seems to happen. Click the link on “Blog” to see the full round-up.
We are happy that our brother-in-law Mick is now using our boat in England with the whole family and will race her at the 2010 Round the Island Race on the 19th of June (next week). Here is some information, which you can also see under “The boat” with more details.
The Struebel’s will be competing in the 2010 Round the Island Race on the 19th June 2010. Michael (Mick) Struebel will skipper with competent crew Tom Struebel, Oliver Struebel and Chris Lambert.
Sailor’s voyage for stroke victims
A sailor will make a heartfelt journey when he takes part in a nautical race to raise money for a stroke charity.Mick Struebel
Mick Struebel, of Mill Lane, Bassingbourn, is taking part in one of the British Isles’ largest participation sporting events, the Isle of Wight’s 79th Round the Island Race, in memory of his mother-in-law…. [read more]
Island journey for sailor Mick
A SAILOR is making an emotional journey in his brother-in-law’s yacht to raise cash for a stroke charity.
Mick Struebel will command his brother-in-law, Robert’s, Waarschip 600 yacht in the JP Morgan Round the Island Race, which begins in Cowes next month and sees 16,000 participants sail round the Isle of Wight… [read more]
The money you donate will be used to not only continue to raise awareness but also to help people who have suffered a stroke. In my family alone last year 3 people suffered 7 strokes in total. Strokes devastate lives. Please help and donate, every little helps…
Click here to donate to The Stroke Association on the JustGiving website.
We have had a lot of fun doing many small things recently. The pictures below (from bottom to top) are of a nice visit we had with Ger (Rob’s Dad) in Eindhoven in May when they went to a Philip Glass concert. As you can see, Jansen also came along and we all had a lot of fun going out together.
We are convinced that Ger has more energy than we do, and we really had to keep up with him going to dinner, an Irish pub, a terrace cafe, and even a drop-in to dance to some pretty heavy live rock. That was funny, because we neglected to pay the cover charge — funny how bouncers are reluctant to go after a guy in a wheelchair with his Dad when most of the patrons were university students.
Everything is blooming like crazy here now, and it was great to share with Rob “smelling the roses” again. There is a funny story behind those roses. Last year when he was in a coma I was trying almost anything I could think of to help bring him out of it. I had heard that the sense of smell is is the most direct route between the outside world and our brains and is also tied most closely to human memory.
On our road there are wild roses, and I would stop to pluck some when I visited Rob. At that time, he was on a ventilator (tubes in mouth, nose). I asked the nurse if it was okay if I had him try to smell the roses, which he said was okay, even though flowers are not allowed in intensive care, but he let me know he would probably not be able to smell them because of all of the tubes.
So what do I do, you ask? I put the roses under his nose and was amazed when within seconds he responded. It took me a few seconds before I realised that what I had done was block off his air supply by the rose petals and he was not responding, but gasping for air! I still have to laugh about the newspaper article, that luckily did not happen, entitled “Wife kills husband with rose petals!”.
Nevertheless, it did prove to the medical folks that he could take on some air on his own, and it was not long after that he was really responding. Actually, I still think it did much more good than my other efforts of singing (those who know my singing can understand that), telling stories, and the occasional other unmentionable things that I tried.
Then there is Rob helping to cook one of his first meals. He is using the super-duper cutting board that Anne gave to him (many thanks!). And after that is us painting some of our garden furniture. As you can see, Rob is getting much more active, and we are both enjoying doing some of the simple things together.
We have had a lot of nice visiting with Dave and Ruth (Ellyn’s parents) from Chicago and Ger (Rob’s father). We mostly enjoyed just hanging out around the house and doing small projects in and around the house. It was really nice just to all be together and catch up on everything from the last year. We also had a short visit from Judy and Walter from New Zealand who were house swapping in The Netherlands.
For Rob’s birthday we went to one of our favourite restaurants, d’ Artiest, where Henny and his crew made us very welcome after a long time since visiting.
We also had a quick visit from Mick, our brother-in-law, who came to pickup the mast for the sailboat to bring over to England. We were happy to have help from our friend Jaap in fixing the rigging on the boat.
Here are some photo’s. If you are wondering why everyone is wearing orange in some of them, that was for Queensday, the national holiday at the end of April.
Robert’s Life Achievement
We had a wonderful time at Rob’s Welcome Home Party. Although it was delayed, it could not have been more fun. We are so happy that so many friends could join in, and it really was a memorable afternoon.
We would like to thank all of you who came, and also for all of the wonderful gifts Rob received. We would also like to thank those of you who helped with the party. Special thanks go to Big Al, Pim and all the friends in Heap of Rubble, Yolanda and Bettina of ‘t Ankertje for all the hard work behind the bar and in the kitchen, Dorette for her special music to Rob, Paul for engraving the trophy and Gary for taking photo’s.
Here are some of photo’s:
Wij hopen dat u weet dat iedereen van onze vrienden naar de partij is uitgenodigd.
We hope you know that all of our friends are invited to the party.
After a few difficult weeks, we wanted to let you know that we are doing well and celebrating life. Rob’s family is also doing well, and although everyone is sad, there is also hope in the future.
Rob has been able to stand for a short amount of time unassisted. Here is a short video clip of Rob talking about standing (in Dutch). He is still struggling with getting his left side moving more, but is making improvements on his strength and dexterity every day. He has a great physio-therapist named Werner de Haan from Praktijk Andijk, who is very motivated and working hard with Rob in a very positive way. The goal is to get him walking, but it will still take some time.
Rob's Heineken commercial (click for video)
Next week we have a visit to the rehabilitation center at the WFG hospital (same as where he was before) so Rob can continue with other therapies to help get him into action more. We are also investigating alternative therapies and new therapies, and hope between all of them, Rob can get to where he wants to be. Overall, we could not be more pleased with the progress he is making since he came home from Heliomare in mid-January.
planting seeds
Today we started all of our seedlings for our garden. We are very excited to see what might grow…
Your spring suddenly broke,
it is good so…
My wife, our mother, mother-in-law and grandmother peacefully and calm,
joined by us all, passed away in her 72nd life year.
Her love, optimism and her perserverance will stay with us always.
Eindhoven, 18 February 2010
Veldm. Montgomerylaan 147, 5612 BB Eindhoven
Services will be held on Friday, 26 February at 13.15 at DELA, Anthony Fokkerweg 150 in Eindhoven. Flowers are welcome.
Het feest zaterdag, 20 februari is afgelast wegens familieomstandigheden. Tonny, de moeder van Robert is streng ziek.
The party Saturday, 20 February is canceled because of family circumstances. Robert’s mother Tonny is severely ill.
Na 7 lange maanden hebben wij beslist dat een feestje is om te vieren Rob’s terugkeer naar gezondheid, vrienden en familie.
Rob’s Welkom Thuis feest zal zijn op zaterdag, 20 februari om 16:00 aan café-pension ‘t Ankertje in Andijk.
Wij zijn heel gelukkig dat onze vrienden Big Al en Pim en hun band Heap of Rubble vrijwillig heeft zich aangeboden een goede blues en rock zal spelen (bedankt kerels/meisje, zullen wij goede zorg van jullie nemen).
Meer details zullen worden gekomen, maar wij hopen vele van u daar te zien!
——————————————————————–
After 7 long months we have decided that a party is in order to celebrate Rob’s return to health, friends and family.
Rob’s Welcome Home party will be on Saturday, 20 February at 4:00 at café-pension ‘t Ankertje in Andijk.
We are very happy that our friends Big Al and Pim and their band Heap of Rubble have volunteerd to play some good blues and rock (thanks guys/girl, we will take good care of you).
More details will be coming, but we hope to see many of you there!
Upon his request, Rob was released from Heliomare today.
(Op zijn verzoek ontslagen Rob uit Heliomare vandaag).
Rob says:
It’s time to build new bridges, which are there to be crossed.
Needless to say, we are both very excited to be home together and doing well.
First of all, we want to wish all of you a very happy new year! We can’t say how much all of your love and support has helped these last 6 months, but please know that they have. One of these days we will be writing you all personally, but until then, please know how much we appreciate it.
My apologies that I’ve been a bit slow on the blog. It actually did me good to hear from a few of you wondering why we had not posted. I was wondering if anyone read this?! I guess I have my answer. We are doing well, and Rob is improving by the day.
We have had a wonderful few weeks. First Mike and Linda came from Seattle. Mike was here for some of the worst times this summer, and it was great that he could be with Rob doing so well now. Both of them have been a great support, and we really enjoyed our time together. Thanks so much for visiting guys. We know that it is a hellish trip from Seattle, but your being here meant so much to us.
Although our lives have changed and we are much more quiet these days, we still managed a lot of giggles. Linda gave us a really cool x-mas ornament, it was the only one that found it’s way to the tree this year, but it is one we will always cherish. Here are the pictures we put inside of it.
For the Christmas days we had some very quiet time just enjoying being together. I think we are both happy to say that we did absolutely nothing. We enjoyed being still, eating some good food, and sitting around the fire.
We had a spectaular visit from Anne, Mick, Tom, Luke and Oliver for the New Years. We had loads of fun playing together, having nice chats, cooking up feasts, and blowing off fireworks into the wee hours. I have to say, nothing has made Rob smile so much as talking with the guys and sharing all of their love and affection. Hey Struebels, you guys are great!
Here are some photo’s from our time. My apologies if they are not formatted well, but I hope you understand.
We had a wonderful time with Rob’s sister Anne and her husband Mick this weekend. Please see 2009 Sinterklaas Weekend on our photo website if you want to see more photo’s.
Rob has decided, with my full support, that another lap at Heliomare is the best solution. We were already happier in the last week with the amount of proactive rehabilitation he has been receiving, and were even happier today with the meetings we had about plans for action.
The new plan is to focus on his standing/walking, along with as much therapy as possible on his left arm. He will also have good cognitive and speech therapy. The new planned release date from Heliomare is sometime the first week of February. With good plans in place, Rob feels like he can handle, it and I also feel that things are moving in the right direction for him.
It was wonderful today to watch Rob standing a few times. He is so motivated to get out of that wheelchair that I know he will be progressing a lot with the very able help of his physio therapists (thanks Hermine and Baas).
We have also put into place all that is needed for when Rob comes home, and it is a relief that we will not be rushed to put things into action too soon. I think we will have some breathing room now, also for the slow wheels of bureaucracy. We have a good social worker helping us, and the system is not as difficult as I thought, with some help (thanks Lenie). In other words, we don’t need to “fly without a net” now.
We were also able to come home in our own car tonight. I can’t express how much freedom that brings us to be able to go out and do things together. Tomorrow we will make a shopping trip together, and although mundane, getting back into a normal rhythm is so important for Rob in regaining his life.
Rob’s mom Tonny is also more stable now with her health, and we are looking forward to a nice visit with Rob’s sister Anne and husband Mick this weekend.
Thanks once again for all of your support. One of these days I will have some time to write you all individually.
Rob is doing great. I haven’t posted, because we have been really busy on Rob’s rehabilitation plan. Rob is slowly but steadily regaining his strength. It’s amazing to see all his improvements by the day. I am shocked by his body’s ability to heal itself – mother-nature is truly amazing in life-giving and nurturing. Here are pictures of us making Speculaas cookies for the very good nurses at Heliomare.
We are still enjoying every small moment together — I hope that lasts forever. We have had a lot of talks about everything that has happened, and are processing it all. The one thing we are both absolutely sure of, is that this experience has made us both richer/stronger, both individually and together. Hence the title to this positing by Rob’s choosing – Rob 2.0.
For any that may not know what that means, it’s our parody of the internet hype “The term Web 2.0 is commonly associated with web applications which facilitate interactive information sharing, interoperability, user-centered design and collaboration on the World Wide Web”.
For us, the meaning is that Rob has in many ways come back stronger than he was before. Rob definitely has his challenges, but he has a new view on things, that is beautiful in it’s purity of seeing things as they are, but also going after everything he can get out of this life. I think this picture of Rob and Jansen says it all.
We are still struggling with Rob’s rehabilitation plans (or lack thereof). We have a big meeting on 3 December, and we are confident that Heliomare will be putting a good plan in place, and that finally Rob can get all the therapy that he needs. Needless to say, we also have put in place a full backup plan, just in case we have divergent ways of looking at his therapy. We are hopeful, but also realistic, and hope for the best on Thursday.
In the process of putting plans in place we have sorted out many of the bigger long-term plans we needed to address. Although it has been a bit more rushed, these are things we needed to sort out anyway. My head is spinning with all that we need to do, but I feel very confident that we will make everything work, and that the extra time needed in the past will be less, once we have his care in place. We are lining up the right kind of people, with the right kind of atitude and mentality. It will be a struggle on the short-term, but I think we are both ready, willing, and able!
To let all of you know our family in Holland is also in the middle of helath problems with Rob’s parents Ger and Tonny. I think Ger will be okay (he won’t tell us otherwise either way), but Tonny is having some very concerning problems with mini-strokes / TIA’s. We hope you keep all of us in your thoughts.
We are looking forward to some nice visits with Rob’s sister Anne and husband Mick and then later in the month by my borther Mike and partner Linda. Next week is Grandma Bender’s 97th birthday. This was our card to our very special lady in Chicago.
Rob received a new camera last week, so that we can start to see the world through Rob’s eyes. These views through the lens may be small things, but to us, they are very important. That is Rob taking his first picture of me. 
Before I gave Rob the camera, I did a test and took a picture of Jansen that I think is kind of funny.
Thanks for sharing it all with us, and being such great support.
The title of this blog is what Rob said would be a good title for the posting this week. I think being “clueless” is what happens after 23 weeks in a medical environment, but overall he is doing great, so no worries. As you can see, Rob is doing really well being home again.
We have a nice rhythm together at home, and Rob gets the stress free rest he needs to deal with the coming week of rehab. We are also having a blast just being together! We are sometimes staying up a bit too late, but we have some really nice slow and lazy mornings, and I think it makes up for it.
We watched our first movies together this weekend. Up until now, Rob has not been able to relax and watch a movie or listen to a lot of music because it was too distracting. That is now changing, and we are both having a nice time just chilling out and doing a lot of nothing, but something. Our first movie was the “The Velveteen Rabbit” (thanks Rob V.). I wanted to watch something low stress to start with, but what I realised is that it was more about “me” not handling stress than Rob (yes, I even cry at sappy commercials these days!).
On Rob’s request, we then watched “Rainbow Bridge”, a Jimi Hendrix film, and Rob was in his element and loving it. On Saturday night I asked Rob what film he really wanted to see, and I was a bit surprised that he said “The Day After Tomorrow”. I would have never thought that would be his first choice for a film, and it’s interesting to see what he finds interesting after all of this. Again, I had a harder time handling the stress than Rob did – please, no more walls of water devastating people and freezing them in their tracks!
We are also trying to make his weekends good for his therapy. Rob did about 10 transfers (2 way) on Saturday. You can’t imagine how much work that is for him, but he keeps at it and is a real trooper. Needless to say, we are both getting more fit with this situation, but somehow you only see it in Rob, regardless of the physical exercise for both of us. Probably all of that extra cream, butter, etc. I put in all our food burns off in him much quicker than me. Still, we both feel more fit than we have in years, both physically and emotionally. A situation like this is definitely a wake-up call on basic nutrition and health. I really see that Rob’s intestinal problems started quite some time ago, but luckily we have the chance to make things better now.
Going to the pub on Saturday afternoon has been nice for Rob, and also some quiet visits from friends. We really enjoyed listening to some nice mellow music, Arthur Ebeling a Dutch rhythm ‘n blues guitarist, that Rob received as a gift from our neighbour Joost (thanks). Slowly Rob is getting back in touch again socially, and although he needs to take it slow, he really likes to sit and chat with friends again. We think in the coming weeks he will be able to go out more and maybe even go listen to some live music soon.
On Sunday we had fun making chocolate chip cookies for the nurses at Heliomare. When he was in intensive care I made them for the nurses sometimes, but we have not had the chance to do it together. It’s nice to be able to thank the great nurses he has at Heliomare, and wonderful that Rob could do it himself. I feel that he is in safe hands with kind and intelligent care. Thanks also to the great care-package from Les with the cookie sheets that actually fit in the oven — awesome!
Rob goes back-and-forth to Heliomare with a volunteer taxi organisation that have been just wonderful to us. These kind hearted souls make sure he comes safely home on Thusday and then back again on Sunday evening (an hour plus journey each way). It helps when you can sit and have a coffee and chat with someone who does this because they have a good heart. They all have been fantastic, and I don’t know all their names, but here is a picture with Nico tonight. Thanks guys – you are all wonderful! It’s always hard on Sunday’s to say “goodbye”, and as you can see from Robert’s face, it is very hard for him to go back.
Rob has a really rough few weeks ahead of him. We are having a hard time understanding the bigger plan for his rehabilitation. We sometimes feel that they base their plan on a calendar, rather than Rob’s actual situation or the possibilities. They seem to base his rehab on the average, not also taking into consideration his other medical situations (3 surgeries) outside of the strokes. For example, I think Rob was in “stasis” for 2 plus months, when the normal flow of his body stopped, and therefore he has a wider window for recovery than they might think possible. Rob is becoming very de-motivated by some of the negativity of therapists, and I am shocked that he sometimes hears what is not possible for him, before they have even tried any therapy. We are both getting very tired of having to fight every step of the way. The “politics” of getting care are sometimes more stressful than the actual situation he is dealing with!
They also don’t give us the bigger plan – only weekly “roosters” of his therapy, which change a lot. We know they are trying their best, but we sometimes wish they would go “outside-of-the-box” more, look at the bigger picture, and try more before making decisions about what is possible or not. I think we will get there in getting him what he needs, but it seems to be a constant struggle…
I think Rob could really use any boost he can get these next couple of weeks. They are going to be putting his left leg in plaster “gips” to help straighten it out. As you can imagine, it will be *very* unpleasant for him. Please feel free to telephone him at Heliomare in the evenings on his mobile (after 5:00 p.m. Holland time): +31 (0)62 033 3064.
While writing this post I got a call from Rob after his return to Heliomare. I really think the stress is becoming to much, because he had a “black-out” in the taxi on his return. He is safely in his room now, but clearly we have to do something to help him. Rob’s sister and parents and I are working on a formal letter to try to get him the full care that he needs and for them to lower the negative stress that is clearly causing him great harm. We only hope it will help… If not, we will need to find better solutions that fit for Rob and his situation.
Please keep Rob in your thoughts, as I know it really helps. We are all doing the best we can, but every little bit extra helps.
As of Thursday night, Rob is off the feeding tube — finally! He is very happy to be free of it, and we both think it will help him tremendously in moving forward.
It all happened a bit unplanned. When he arrived home on Thursday night, while taking his jacket off it became loose. We called the nurses to ask what to do, and we were very happy that they said to just take it out. It was in the plan for next week anyway, but having a weekend home without that horrible thing made such a difference in his eating, sleeping, and his whole demeanour. Not being tied to something all of the time makes everything more comfortable and less stressful.
Rob was able to join into our Friday afternoon work conference call. It was really good for him to be able to connect to “Team Portalyx” again, and he really enjoyed his chat with Jan and Gerrit. No worries, we’re not going to push him back into work any time too soon… but he did enjoying being part of things again. I am soooooo appreciative of how much Gerrit and Jan have picked up on everything these last months, and I hope you know how much it means to both of us.
We had some nice visits with friends this weekend. Possibly it was a bit too much, but it was also really nice (we stayed up way too late). Anneloes made some amazing Goulash that Rob could not stop eating. 
Rob V. gave Rob a really nice massage and they really connected again (and I got one too!). They have also both helped so much in keeping our animals fed and keeping Jansen happy all of these months. Jansen has 2 houses right now, and although a bit confusing for him sometimes, its great to know that he has lots of affection. True kindness and compassion are often hard to find, but we are so grateful for the friends who can express it, and share with us — thank you.
It’s such a joy being with Rob and watching him enjoy eating and being “normal” again. We savour every meal together. It takes me forever to go shopping because I am scrutinizing all the labels for the most high fat, high calorie, healthy food you can get. “Low fat” food only recently hit Holland, and I have to say, the timing could not have been worse. I love throwing a few extra spoonfuls of full fat cream or butter in his food, and really enjoy watching him eat lots of spices and all the things he missed for so many months. I probably send him back to Heliomare reeking of garlic, but the pleasure he gets from it all is great. He is even eating sambal (red pepper sauce) and had a Greek “rolpizza”. For the first time in many years Rob eats as much as I do, and is loving every bit of it. Bring on another plate of ham-n-eggs on toast with lots of cheddar cheese!
We also had a nice visit to the pub on Saturday. I’ll be honest, the first 2 weekends Rob wanted to go, but I did not. It really matters who is in the pub (what type of people), because our other visits were a bit disappointing. This weekend it was really nice, and there were caring and compasionate friends around him. Thanks guys [Jaap, Fritz, Isle, Gary, et al], it really does matter.
We had a funny story with the tax office trying to confiscate our auto last week. What made it even more funny is that we sold it last month and had already paid tax for it. I found it absolutely wonderful that friends of ours at the pub were ready to step in and buy our auto and sort it out if they did try to take it away. Luckily, it was not needed, but it’s great to know we have friends that were willing to help (thanks guys, Gary et al!). I have no idea what the photo in this advert is of — any ideas???
We had a nice Sunday with an unplanned visit from many of our neighbours. It was fun to sit around drinking coffee and eating apple pie (with lots of fresh cream of course!). Rob finds it a bit difficult in groups of people to process everything, but I think that is only natural after being so isolated for so long. Everyone has been great to offer their help and support to Rob (and me), and we want you all to know that it is very much appreciated. It’s been a very difficult time, and all of your kind offers to pitch in means the world to us. I think I can speak for both of our families in saying that they also appreciate knowing that we have some helping-hands nearby. Thank you — Joost & Marja, Barb & Sjef, John & Adrianna and Cobi.
And as ever, Jansen was a good buddy to Rob over the weekend. They are great together and it’s clear that they are happy to be with each other again.
For those of us old enough to remember, these were Rob’s words about the future “You aint seen nothing yet”. Wow, a bit of BTO….
Rob is out of quarantine (isolation) at Heliomare. Yipee!!! He is thrilled and eager to move forward with his full therapy now. Much of his therapy had been limited while in quarantine most of October, and he can finally do what he went there to do – rehabilitation.
And … Rob was also able to stand a few times today for longer amounts of time and was also able to transfer himself to different places on his own. That will give him a lot more independence.
Now that he is able to have full rehabilitation, because he can go to the gym and do other activities, we are hoping he can get more muscle tone and progress more quickly.
He will be home again for another long weekend from Thursday evening to Sunday evening (5-8 Nov.). I’m really looking forward to seeing all the new things he can do!
We had a very happy Halloween weekend together. Rob was home again for a long weekend, and we had a wonderful time relaxing, eating some good meals and sitting by the fire.
Rob was able to stand 3 times today! His progress is going well now that he has been able to build up his strength. He is eating “normal” food now, and that has had a very positive effect on him in every way.
I’m going to keep this posting short because I’m very busy. Thanks again for all of your great responses. They really are giving Rob (and me) a boost.
We had an unbelievable happy weekend. Rob was finally able to come home for a long weekend. To say that this was a special moment would be a huge understatement. It was absolutely fantastic!
Everything was arranged rather quickly and we had a delay because Rob had a bad reaction to antibiotics — the reason for the skin irritation to his face in the photo’s. Ultimately everything worked out great and Rob came rolling up to the house on Friday late in the afternoon. Just seeing the look in his eyes when he saw his house for the first time is something I will never forget. We were both overwhelmed with happiness.
Rob immediately settled in and enjoyed every moment of being home again. There is just nothing like being at home and in familiar surroundings. He had a warm welcome from Jansen, who followed his boss around all weekend. He really enjoyed seeing the new things we had done to the house to make it more comfortable. It was very nice of our neighbours to come help me on short notice to get things ready for his arrival — many thanks.
He was thrilled with his new TV, the painting of our house, and the red reclining chair, among other little things. 
As soon as he saw the chair he wanted to try it out, and did great with getting in/out of it. I also think it proved to be good therapy with having other positions he can stretch out in. Rob really enjoyed being around all our furry friends. All the cats came in one-by-one to greet him with loud “meows”. There was a competition all weekend between Jansen and Sally the cat over who got to sit closest to Rob. Rob is having various therapies at Heliomare, but I think a little “fur” therapy will also help him a lot in gaining some motion back.
He really loved the renovated “winkel”, and I don’t hink he could believe that it was the same room. We had to improvise a bit this weekend, but he really enjoyed being able to use it, and could really move around easily in it. I’m hoping we can give it the full work out on his next visit, and we are both absolutely thrilled to have it done, and can really see how helpful it will be in the coming months. Rob was stunned when I told him about all of the donations to the project, and he is looking forward to thanking you all personally soon.
All of the small things about just hanging around the house, outside of a medical environment, were wonderful. We had a few quiet visits with nearby friends, which Robert had not seen in many months. He was so happy to see friends again and be around people who know him. It was also helpful to have all of their support and knowing they could lend a hand if needed.
We were also able to go out in the garden and Rob could enjoy being around some greenery again. We were laughing at our vegetable garden because it kind of went wild this summer and I haven’t had the time to do much with it. It looks like “garden cleanup” therapy will also be high on the agenda in the coming weekends.
Rob also had a chance to be in his shed again, which is one of his favourite places to hang out. I’m in the middle of a massive cleanup there, but was able to clear enough space that he could see his old Daf car and check out all his tools. I think over time it is going to be a good place for him to get back into doing things he likes and also getting away from me for a while too!
We also did a bit of strolling around our neighbourhood and we made a quick stop at the local pub so Rob could say “hello”. I think people were surprised to see him because we had not let many people know in advance that he was coming home. He really enjoyed being there and seeing some of his friends again.
The last night was very quiet sitting around a nice fire and chilling out. Rob kept monitoring the time, and it was clear that he did not want the weekend to end, and neither did I. It all felt so normal again to be back home and together again. After all of these terribly difficult months, it was a slice of nirvana.
It was hard for him to go back on Monday, but we both know that the rehab at Heliomare is the best way forward now. We are hoping that he will be able to come home every weekend now, so that will make rehab a lot easer to handle. We can’t wait for his next visit and are counting the hours until his return…
Waarschuwing: Alstublieft bezoek Rob nu niet. Hij is terug in quarantaine. Hij heeft nog steeds een probleem met een bacteriën. Hij wordt heel teleurgesteld. Het goed nieuws is dat zij zullen toestaan dat hem meer te drinken en te eten. Ik hoop dat zal maken die quarantaine gemakkelijker voor hem. Ik zal de Bezoekers pagina actualiseren wanneer het veilig is hem opnieuw te bezoeken (geactualiseerde 19 oktober).
Warning: Please do not visit Rob now. He is back again in quarantine. He still has a problem with a bacteria. He is very disappointed. The good news is that they will allow him to drink and eat more. I hope that will make quarantine a little easier for him. I will update the Visitors page when it is safe to visit him again (updated 19 October).
We had another wonderful weekend, despite some bumps in the road.
It was a bit of a rough day on Saturday, because they told Rob he was in quarantine again. We don’t completely understand it, because he has not really been very sick. It was a real downer for Rob, because quarantine really limits his therapy. He really wants to get moving with everything he can, and if he is limited to his room he can’t participate in everything. It’s also really hard on him socially — he is stuck with only me all the time.
We should hear more about it on Monday, and hopefully this was just a mistake. Overall, we understand their concern, because they are worried about a possible stomach flu going around at Heliomare, but Rob really isn’t showing much in the way of symptoms, and is getting stronger every day.
Luckily, again we were able to get out and about outside of Heliomare, as the quarantine is primarily for the workers and other patients. After the shock of the quarantine on Saturday, Rob did a great job of putting it to the side, and we really enjoyed the day on Sunday. We got lucky again with some nice weather, and were able to have some fun being out in the sun and hanging out at what is fast becoming our favourite restaurant — the Sonnevanck.
When we returned back to Heliomare we had a nice visit from Albert and Pim. It was great to see Rob having a few good laughs with the guys. It’s bock beer season, and was the first sip of real beer that Rob has had in 4 months. He really enjoyed it, but took it real slow and only had a few sips.
It’s just a shame that we had to cancel other visitors this weekend, because yet again we were not clear about what the situation was. It’s getting quite frustrating that some of these obstacles are proving harder to overcome and make sense of than the actual situation Rob is dealing with. Rob was out and about for 5+ hours today, and definitely is getting stronger every day.
We are also having some frustrations because they are still severely limiting what Rob can drink and eat. Rob has tried to be patient with the situation, but it is totally clear to both of us that he is ready and able to eat and drink. We hope the situation will change in the coming days, as the over cautiousness is in our view, becoming more dangerous than the risks. He has been far too long on a tube fed diet, and struggles with both nose and stomach problems because of it, not to mention a tube stuck in his nose 24/7!
For some reason, which has not yet been explained well enough to us to accept, they will not do the testing required to give evidence that he can not drink and eat, and are prolonging a very uncomfortable situation far too long. We’ve tried to deal with it diplomatically, but if something does not change soon, we are definitely going to need to do something about it. We have been reluctant to do more, when the overall care has been very good, but we just don’t get it anymore, and hope things change quickly!
Despite the frustrations, Rob is really doing really well, and has managed to be up-beat and positive. From my perspective, that is so important, and I hope I can help him to stay that way. With a situation like this, attitude is everything. Rob certainly is showing what he is made of to deal with all of the things that have happened, and also the many additional stresses that have come his way. He really is inspiring to me, and I am so proud of him every day. He is going to overcome this, that I am completely sure of.
I hope I don’t piss anyone off at Heliomare if they read this, but really, enough is enough. The guy has been through hell and back, and really just needs to get a break so he can get back on his feet! At the risk of really pissing people off, I sometimes wonder if it is not just easier to be over cautious than to take the extra effort that is needed to make sure he is safely drinking and eating. He has had 4 months of the medical system deciding his fate, and some of the problems were caused by it. It’s time to find real solutions!
As ever, Jansen is having fun and is really helping Rob with his recovery. A few good face licks from Jansen and Rob can shrug off all the rest. He is doing really good with walking next to us with the wheelchair now, which is a real improvement on the past when we went one way, and he the other. We are all getting the hang of things better and settling into a good routine. As you can see, the restaurant we like is also very dog friendly. Now if I can just figure out how to smuggle 4 cats, 3 rabbits and 3 chickens in to visit, we’ll be all set.
Jansen did a good job of pissing off some highly strung fishermen that seemed to think they owned the beach. It’s like they wanted to blame his presence on them not catching any fish – jerks! I was really happy when he pee’d on one of the lines afterwards (tee, hee, I didn’t even try to stop him).
This is Thomas in 1995, same age as Rob in his scooter picture. Same make scooter!!! Found it in a charity shop in UK and bought it for Tom because it reminded me so much of Rob and his scooter!
I just talked to Rob on the telephone and he told me that he was able to stand today for a short amount of time. He needed to be assisted and hold on tight, but this is a very big step in his recovery.
He has a lot of work to do on building up his left leg and it causes him a lot of pain. Hopefully with a lot of therapy this will continue, and he can get back to his old self soon.
We’ve also heard that Rob’s cousin Alex will be going to Heliomare after having an accident. It should be nice for them to have each other’s company and be able to encourage each other in their rehabilitation.
Also … Rob is out of quarantine. He is happy to have visitors!
Ook … Rob is uit quarantaine. Hij is gelukkig bezoekers te hebben!
Rob is doing really well. He seems to have made it through this last infection with flying colours, although it was very unpleasant for him. We’ve had a good long weekend together, and he is really making big steps and making up for lost time. Tonight he was really moving and stretching his left leg and that is a big step to be able to stand, and hopefully walk soon.
Thursday was a bit of a stressful day. Rob has been at Heliomare for 3 weeks in a “proof time” to make sure he was strong enough for the full rehabilitation program. We were busy the entire day with evaluations and meetings with all of the therapists and the doctor (it felt a bit like an all day job interview for both of us!). At the end of the day we were very relieved to hear that they feel confident they will be able to help Rob and that he can stay for the full program. We had been concerned because of the recent infection, but they seem to have seen how far he came despite it.
It looks like Rob might be able to start coming home for weekends in 3-4 weeks, but of course, that all depends on how things go in the next weeks. So the first big goal is set, and Rob is very eager to move forward and come home for weekends –we are hoping for Halloween (30/31 October). If there is one thing we have both learned through all of this, it is to take every day as it comes. If he keeps fighting as hard as he has, I think he will be able to do it and finally get home!
They estimate that Rob will be at Heliomare for about 3 months. From there he can continue his rehab more locally while staying at home. I think the positive effects of being home and in his own environment will do wonders for him. We’ll have some modifications to make at home (and our lifestyle), but I think we will manage with a little tenacity and creativity. So, Rob has set his second big goal of trying to get home permanently before the Christmas/New Years holidays.
Warning! We just found out that as a precaution, Rob will be in in quarantine a few more days. He is very disappointed. I will update the Bezoekers (vistors) page when it is safe to visit him again.
He will be so happy to be able to get out and around Heliomare and be able to do the full program. He’ll also be really happy to see visitors again. It’s been really hard on him to be cooped up in the room all the time with very little contact with others. He asked me to take this picture of his “Quarantine” sign (note that he is outside of the room for this picture).
Luckily, they have let him get out away from Heliomare with me, as there were very few risks for others outside the clinic being infected. The nurses and therapists have been great with him, and very sympathetic to his situation. Overall, I am in shock and awe that he could manage it so well and still maintain such a positive attitude. It really makes you appreciate what freedom is, especially when limited like that after already having been through so much.
The weather is really starting to change now, and you really see it on the North Sea coast. We were lucky with some nice sunshine on Friday and jumped on it and went to probably the last nice terrace visit of the season. Rob is starting to nibble at some normal food, but only to taste it, because he has some swallowing problems. Luckily, there are a few of his favourite Dutch treats that the insides are of the right pureed consistency that he can enjoy a bit of the sense of taste without too much risk [Bernadette -- don't worry, I watch him like a hawk].
On Saturday we took our first drive in a wheelchair taxi to the hotel, because the weather turned stormy and it is up on a really high sand dune that I was a bit nervous about navigating, especially on the way down. We hung out in the hotel room for a while with Jansen and then had a nice time at the restaurant with a stunning view of the sea.
It’s really nice that the local restaurants really try hard to accommodate the needs of the Heliomare clients, and they have all been wonderful to us both (thank you everyone at Hoge Duin and Zeeduin). My timing was not great, and it took some time to get back to Heliomare with the taxi, but we had a great time, and Rob did great at being active all day without a rest. I’m getting better at logistics, and I hope our next outing will be a bit easier for Rob.
Today, on Sunday, we also had another nice day at a restaurant watching a stormy day outside. Just being able to enjoy things together again has been so special. We really are appreciating all of the wonderful family, friends, and “things” we have in our lives and are looking forward to our future. Although things are going to be different, we both agree that is also a wonderful challenge to find what is inside of us to move forward and have a good life together.
We’ve also spent a lot of time talking about the last 4 months and processing all the time Rob lost. It is now week 18 of the odyssey, and from piecing it together, we think it is only the last 6 weeks (early September) that Rob really remembers. Overall, I think that it is just as well that he does not remember most of that time, but I do think he wishes he remembered all of the visits from family and friends. I took many pictures and kept a diary for him, and I think that helps.
I showed Rob the blog today and he was stunned with all of your comments. Thank you all for all of your support and well wishes — they really do help. It will also help to hear from all of you over the coming months and encouraging him onwards. Every comment, no matter how silly or short, helps (really!). I hope in the next week or so he can login and start replying himself. At the beginning, I will be typing, but it will be his words. E-mails are a bit too challenging now, so please use the blog if you can.
And in closing, again more Jansen pictures (oh, no, more pictures of the dog!). I don’t have that many exciting pictures of us, but Jansen is all go, and a fun diversion and chronicler of it all from the sidelines.
He has been a good road warrior with all of this. All I need to do is look at the car and he jumps in. Tonight I spilled his food and he had his initiation into a McDonald’s hamburger for dinner (is that animal cruelty?). I had a good laugh when we got home and he no longer fit through the dog/cat door (maybe it’s time for SlimFast!).
He loves his walks on the beach, and discovered seagulls this weekend. It’s pretty funny watching his attempts to go after them, and he never gets closer than 10 meters before they fly away en mass – poor guy. He did a bit better at tackling one of the beach buggy sails, but ditched the Dutch bike on the beach to go after more seagulls.
N.B. Excuses for the bad pictures in this post. Jansen and I got a bit overzealous on the beach last weekend (overwhelmed by massive waves) and my camera is loaded with sand and won’t work. Until I sort things out, photo’s are from my mobile phone – ugh!
We had an amazing weekend. After being told that Rob was in quarantine, they decided it was okay for me to take him over to the hotel to celebrate my birthday. I quickly arranged a little party for us, and our friend Albert came over too.
We had a wonderful time. We joked and laughed a lot — I don’t think Rob stopped smiling the whole time. We had 3 ½ wonderful hours together. Rob had some sips of champagne (click for video) and was able to enjoy some birthday cake and snacks. He was a very happy guy, and the best birthday present I could ever ask for!
It really was a great night, but we eventually had to bring Rob back for a good sleep. Albert and I continued on the party at a nice fish restaurant overlooking the sea. The weather has been really stormy and windy, and it was fun to watch it all and have some nice chats.
Today Rob and I went out again and he even got to enjoy a bit of frikandel (a deep fried minced sausage) and some fries with mayo. He had tears in his eyes he enjoyed it so much. It’s amazing how much just having some real food (even junk food) helps his spirits so much.
We got really lucky with the weather today and got to enjoy another day in the sun and dunes. Jansen had a blast on the beach playing with all the flotsam the storm blew in. It was really windy and he almost blew away a few times.
Rob has been doing well and getting stronger every day. Unfortunately, it looks like he got hit by another bacterial infection. It is a healthcare-associated (HAI) and and antibiotic-associated infection called Clostridium difficile (CDI, CDF or C-diff).
It was caught quickly and being managed by antibiotics and electrolytes, so we are hoping it is not one of the more virulent strains and won’t grow into one of the nastier forms.
Rob is not feeling too bad, so he clearly seems to be able to fight this better than some of the past infections that stopped him in his tracks. When I talked to him tonight his biggest concern was that the TV wasn’t working!
Alstublieft bezoek Rob nu niet.Ik zal het Bezoekers pagina actualiseren wanneer het veilig is hem opnieuw te bezoeken.
Please do not visit Rob now. I will update the Visitors page when it is safe to visit him again.
I’m quickly learning more about this infection, and did not realise how common it has become in recent years. It is not only in patients like Rob who have recently had many antibiotics, abdominal surgery, and a long healthcare stay, they are also starting to find more C-diff in the community and in the retail food chain.
C-diff infections mostly affect people who have been on antibiotics because antibiotics destroy both friendly and unfriendly bacteria. When antibiotics destroy friendly bacteria, unfriendly bacteria like C-diff can grow much more easily as they have no competition.
So when you hear about limiting antibiotic usage, it’s not only about containing superbugs like MSRA (resistant Staph aureus) in the community, it’s also for your own good so that your body can fight off bugs like C-diff. And as with all of these bugs, the best defense is good hand hygiene!
Stay focused.
Be “hoo” you are.
Trust in a wise friend.
Live off the land.
Glide through dark times.
Be observant.
Life’s a hoot!
We had a great time this weekend wandering around the dunes and town. Rob is really building up his strength and able to be out of bed for longer times. We really enjoyed the great weather and sitting out in the sun on a terrace.
Later today we were talking about what sensations he had on his left side. He has been able to move his left leg, foot and toes and physiotherapy is helping a lot to regain movement. He has not been able to move his left arm, hand and fingers. He does feel a lot of tingling, and we have been talking about the brains plasticity and ability to reorganize itself by forming new connections between brain cells (good book on this topic: “The Brain That Changes Itself” by Norman Doidge).
While we were discussing it, I was holding Rob’s left fingers and started to feel resistance back. As we talked more, Rob was able to start moving his fingers and hand and even his left arm. It was very exciting and a very big step in his recovery. He certainly seems to be re-wiring his brain now that he is regaining his health and we are very optimistic about his recovery.
On Saturday Rob had a surprise visit from his cousin Anja who lives near Heliomare. We have not seen her in years, so it was great to catch up on everything. Her brother Alex has also been through a very challenging time with his health, and we are hoping to be able to visit him in the not-too-distant future.
On Friday our friend Albert and I had talked about meeting up by Heliomare. I mentioned that I wanted to stop in at a café because an old friend, Dorien, was playing there (she played at our wedding). It really is small world, because Albert studies singing with Dorien. It was really nice for us to see each other again, and I’m hoping Rob can go to her next gig later in October.
Rob also had a visit from Albert and his son Hans at Heliomare. It’s nice that they live nearby, because they have come twice now, but the timing just has not worked out and Rob has been sleeping. I think Albert needs to bring his harmonica’s next time to wake him up with a bit of blues!
We went on Friday to get a new used Saab from a collague of Mick’s, our brother-in-law. It was sad to see our old “Green Goddess” Saab put to rest, but at 21 years, she was no longer “Thor” the road warrior. Thanks for sorting that all out for us Mick and Anne!
And as always, Jansen loves the visits with Rob and wandering around the dunes. Jansen also enjoyed himself hearing live music at a beach bar. The guy playing tambourine made the mistake of shaking it at Jansen, who went nuts and accidently unplugged the band’s equipment while trying to go after the tambourine. I had warned the guy, but I guess he found out the hard way about what a party animal Jansen is (he has demolished 4 tambourines at home)!
We had a nice celebration the night before Rob left the hospital. He finally got that beer he has been yearning for (an alcohol free Palm) and really enjoyed it. Rob had a lot of well wishes from all the staff and everyone remarked on how fast he is progressing now that he is building up his strength.
We then took a walk over to the ICU so that Rob could thank them for all of their great care. It was all pretty overwhelming for both of us. Although Rob does not remember much of his time there he does remember a few things. The nurses were all happy to see him doing so well. He declared that the next time he visits he will be walking in to see them. Rob gave them a big chocolate chip cookie to thank them.
Leaving the hospital was a bit delayed, but we finally made it over to Heliomare in the afternoon. Most of Thursday and Friday were busy with receiving information and reviewing his current condition. They started some rehab and Monday he will be in the full swing of things. It’s going to be a lot of work, but Rob is very motivated to make the best of his time here. We are both very happy with Heliomare and are seeing progress every day.
Today (Sunday) we took a nice stroll around the dunes with Jansen. We have been lucky with the weather and the sea and sunshine did us all well. It’s a bit of a challenge maneuvering with the wheelchair and Jansen, but we should get better with that in time. Rob does great with managing Jansen and they are really bonding again after all this time.
We also went into town where they were having antiquarian book market and sat out side on a terrace enjoying the scene. It’s so wonderful to be doing these small things together and we are both celebrating every moment of it.
This weekend has been mostly catching up on rest, as they don’t do rehab on the weekends. Jansen and I are staying at a hotel not far away from Heliomare. Jansen loves to hang out outside the room and seems to think he is the boss of the hotel already.
The hotel is on top of a high dune and has a great view to the sea – hence the Dutch name “Hoge Duin”. I’m hoping that next weekend we will be able to come over together and enjoy their panorama terrace and maybe even some real food for Rob at the restaurant. Jansen thinks it’s a fun game to make the automatic door at the hotel open for him – Open Sesame!.
I’m off to walk back to Heliomare with Jansen now to see Rob. We walk on the beach on the way over so Jansen can play with all the dogs (lots of them here). We will probably just hang around Heliomare the rest of the afternoon before heading back to Andijk.
For anyone interested in visiting Rob, I know that he would really enjoy it now. The visiting hours are limited to the week nights because he will be busy all day in rehab, but in the weekends he is almost completely free. Please see “Bezoekers / Post” for more information about visiting, telephoning and his post address.
N.B. Rob was too tired to go out on Sunday afternoon, so I was caught in a bit of a dilema of what to do with Jansen. The nurse said it was okay to bring him up, so once again Jansen was smuggled in to visit Rob. He did fine in my duffle bag, and even fell asleep in it when I was walking around with him.
Isha’s first day at Uni! Boys already started school 2 weeks ago! I know you are proud Rob, so here a picture for especially for you!
Yipee! Rob is leaving the hospital on Thursday (17 September) for rehabilitation. He is so happy to be getting the hell out of there. It will be the end of his 14th week by then — over 3 months!
As you can imagine, we had a nice celebration after we heard the news. Jansen and our friend Rob Vermeer were also able to share the fun with us.
Rob had a good face licking by Jansen, but I figure it can’t do him any more harm than all the germs floating around the hospital.
Thanks Rob V. for helping us out with bringing Jansen today.
Rob is doing great. Every day he is improving, and he is able to enjoy some of life’s simple pleasures.
Rob’s parents Ger and Tonny came up from the south of Holland for a visit today. It was a tiring trip for them, but I think they all loved to see each other. Rob received a beautiful quartz owl from them and we all enjoyed time just hanging out together. What a difference for them to see him after being here last when he was in intensive care.
Rob was finally able to eat some Ben & Jerry’s ice-cream. He had tears in his eyes after 90 days of a liquid diet thorough his nose. He also had a big craving for a Sprite, which I’ve never seen him drink before. After his first big slug he said “it’s even better than beer!”. He is slowly increasing eating normal food, and even had a coffee today. He can’t wait to get the nose tube out, and we hope that happens in the coming days.
He had his first shower today and felt and looked great after it. And “yes”, to those of you have commented that his hair looks more red, it definitely does. I bought him a new swimsuit for when he goes to rehab, but was worried that it was a bit big. The nurses were very nice and helped him to model it. I wish I had a picture, because he had these abstract patterned “boardshorts” and a stripey shirt and made a wonderful “I’m Too Sexy” pose for us. He is swimming in them now, but hopefully he will grow into them in short order.
He is also able to get around much better now, and that should be increasing every day. I am hoping we hear in the coming days about going to rehabilitation. I think he has enough strength to do really well now, and he is VERY motivated and wants to get started quick! “What are we waiting for” is what Rob says — indeed.
I’m brining his trainers in tomorrow because they want to try to get him standing up a bit. I’m also going to bring some of his Levi’s and normal clothes, which I think will make him feel much better too.
I hope you don’t mind me posting so much. It’s just so exciting to see him doing so well and we are both celebrating every moment of it!
Today we received the most beautiful song dedicated to Rob from his good friend Dorette. I’ll let her wonderful music say the rest [click on this link to hear "Change", by Dorette].
We are definitely “acting on an unknown stage”, but I do think all of those things we somtimes took for granted, flowers, clouds, birds, will all be seen differently now, for the better.
I think the core Rob has not changed — that is a great relief. I hear and see the Rob we know and love, but I think he will see the world a little different. I think his changes will be hard, but also beautiful. I’m so grateful for good family and friends to help us through it all.
Here is a picture of Rob today enjoying life and being in the sun. It’s life’s simple pleasures that mean the most. For the rest, we will figure out those changes…
The last 2 weeks Rob has been improving really well. He had a few small set backs with infections, but he came out of them quickly. Now he is really building up his strength and very eager to get out of the hospital.
We have been very busy working on his rehabilitation plan. I have to say, the myriad of information to research has been mind boggling. We’ve had some hurdles to overcome, but finally got where we wanted to be and he is going to Heliomare revalidatie. We don’t have a date yet, but it will be sometime before the end of September.
I’m really happy that I am able to communicate with Rob well now, and that he can tell me his preferences. Heliomare was his first choice, as well as mine. They have all the needed rehab and a lot of extra’s. It is located on the west coast in the sand dunes by the sea and is very restful. It’s about 70 kilometers away — 1.25 hours because there is no direct route (see route 1 or route 2 or route 3). There is also a hotel close by, and I will probably stay there on the weekends until he can come home for the weekends.
We had a wonderful visit with our friend Claire from the UK. She was a very caring and kind boost for Rob, and his face lit up as soon as she came into the room. She was also a very patient friend to me, listening to all my worries, and helping me to sort out a lot of things around the house.
Being a massage therapist, Claire was also able to give Rob some treatment, and showed me a lot of things that I can do to help Rob. I also got a great treatment and she managed to get a lot of the knots and stress out of my body.
Here’s a picture of Rob and Claire using the weights Claire gave him. As you can see, he still has his humour and is showing Claire his big muscles and what a tough guy he is. There is no doubt that he is a tough guy after all that he has been through!
Rob is really starting to gain a lot of strength and a bit of weight. He is getting closer to being on normal food, and we expect him to really pickup his weight quickly. Oh, how I so wish I could give him a fat donation! I’m hoping to post more pictures soon, so stay tuned…
Thanks again for all of your comments, e-mails, cards and gifts. They really have helped a lot, and although I’m not always great at getting back to everyone, please know they are appreciated.
After a 10 long weeks, Rob was finally able to leave intensive care on Friday, 21 August. As you can imagine, we are thrilled.
The timing was perfect because Rob’s sister Anne arrived from England with our niece Isha and nephews Thomas, Luke and Oliver. Rob was very happy to see all of them, and that they could celebrate this big step together with us.
It was good Rob had a nice quiet weekend with many short visits with the family. It’s much quieter now that he is in a “normal” room, and he can finally get some real rest.
He was also able to get rid of the tracheotomy sooner than expected and has an easier time talking now. He has been eating small amounts of food, after 70+ days on a liquid diet, and is very happy about that. Now I can bring him Ben & Jerry’s ice-cream, which is his favourite.
Rob was also able to have a sneak visit from our dog Jansen. We hid him under a jacket and smuggled him past the receptionist. She saw him on the way out with our neighbour Rob Vermeer, but by then it was too late. Rob really got a kick out of seeing him.
Rob is now in full rehabilitation mode. He has a long recovery ahead and is starting now with all the speech-, physio-, and ergo- therapy. I still have no idea how long we can expect him to be in the hospital, but should learn more soon.
Rob is now able to receive visitors. We have posted a page “Bezoekers/Visitors” (in Dutch) with information about visiting.
Rob has been doing pretty well since they put him on the heavier antibiotics. He seems to have shaken the worst of the staph and strep infections. Still, this week he has been having intermittent chills and fever’s of unknown origin (yes, there is a name for that — FUO).
I am relieved that they treated this aggressively, and decided that it was best to take him to the regional academic hospital for a PET scan, as they don’t have the equipment at the Westfriesgasthuis. So today Rob was bundled up and taken by ambulance, with an attending doctor and nurse, for a closer look to find the source of the infection.
The PET scan showed “hot spot” area’s of infection. Shortly after returning back to the Westfriesgasthuis he was taken back to radiology to incise and drain 2 of the abscess’. He needs to have a surgical procedure to clean and drain one more abscess tomorrow. With all luck, that will go well and he can finally be rid of these infernal infections!
Although the journey and subsequent procedures today were all heavy for Rob, he handled it all very well, and even with humour. I was saying to him that he finally got to wear his new pajama’s and that he looked very handsome. He was batting his eyes at me and smiling rather coyly to show me how handsome he looked.
Annelies Tacx
I can tell that my nerves are really starting to fray a bit, because I almost had a heart attack tonight when I went to visit Rob after he returned, only to find that he was taken to radiology to remove the abscess’. Luckily, one of our favourite doctors, who always keeps us well informed, let me know quickly what was happening and why, before I totally lost it. It was good that everything was done quickly and they dealt with my stress-out really well. (I hope she does not mind that I posted her picture from the hospital website).
I think in many ways, Rob is handling all of this better than I am. It is only the last days that he has really said that he wanted to go home. I think that is quite remarkable, after all that he has been through, that he has not demanded that more often and sooner.
I just looked at my calendar today and it is now 63 days since this all began. I would be lying if I didn’t say it has been the hardest days of both Rob’s and my lives, but it looks there is finally some light at the end of the tunnel!
Rob was doing really great most of last week. He was taken off the ventilator on Saturday, 1 August, and his breathing has remained good since that time. The plan was that he would move out of intensive care to a normal room on Thursday, 6 August.
Unfortunately, Rob got hit by a double whammy of two hospital acquired infections, Staphylococcus (Staph) and Streptococcus (Strep). They have really knocked all the energy out of him and he has been battling fevers and chills for a couple of days.
They put him on one of the heaviest antibiotics there is, Vancomycin, and we are waiting to see if that “vanquishes” these insidious bacteria’s. As of today he seems to be doing well with the fever, but he is extremely tired. The antibiotic is also very hard on him, but he seems to be resonding to it (no signs of MSRA).
by Rhonald Blommestijn
I sometimes wish I could just bring him home to our not-so-tidy house because he would be better off here than getting hit by all the hospital germs. Sadly, I know that is not yet possible, but hope it will some day soon.
Rob’s father Ger had surgery on Thursday for an intestinal problem. I’m happy to report that all went well and he is recovering nicely. As you can imagine, this has been especially stressful for Rob’s mother Tonny and his sister Anne, on top of the situation with Rob, but they seem to be holding up well.
We are making a lot of progress on the “Rob’s Winkel Project” . Most of the heavy work is done and I am now busy sanding and painting so that Peter can get the floor and tiles in next week. This project has been a good diversion for me to do something for Rob and stop my mind from spinning too much.
Thanks again for everyone’s support and the good thoughts that you are sending Rob’s way.
In response to those young fellows in the UK, Tara would like to say …
… and also ….
Rob is really improving now. He is still fighting a low grade lung infection, but they seem to be controlling it well. He is able to sit in a chair for a while and is being slowly weaned from the ventilator. They still have him on a few med’s, but overall, he seems to be maintaining well on his own strength.
We have had some absolutely wonderful times together this week. Rob’s spirits are very good and he smiles a lot, loves to give and get get kisses and hugs, and is making some jokes. It’s still hard for him to talk because the ventilator/tracheotomy, but I’m understanding him more every day when he is off the ventilator.
They finally moved him into his own room which is really great. We can talk a lot more open and play music a bit louder, and he has a view to the outside. He jokingly asked the nurse for a beer the other day, and yesterday he was jamming in bed to ZZ Top’s “Tush“. Tomorrow I’ll be bringing in “Smoke on the Water” as it’s one of his and his Dad Ger’s favourties.
If everything continues as it has this week (no more infections), I am hoping he will not be in intensive care too much longer. Once he is in a “normal” room, it will make it easier for visitors. Poor Rob has mostly been stuck with me visiting him all the time, along with the wonderfully supportive visits of our family. I think it will be great for him to start to see others soon. I’ll be keeping everyone posted as to when that will be possible.
Rob is now in his 7th week in intensive care. He started out the week great, and finally got off the ventilator. That was absolutely fabulous because the ventilator causes infections — kind of an evil circle.
Rob was doing great for about 5 days. Unfortunately, he then got hit by another infection and had a high temperature and was put back on the ventilator. They also sedated him again.
His temperature has been good now for 2 days. They have taken him off the sedation, and I hope to see his beautiful green eyes soon….
As of Sunday the 26th, he is now awake, but very tired. He is responding pretty well, and even managed a smile. It’s incredible how hard he has been fighting all of this, and his spirits seem to be good despite this last dip.
It’s been a tremendously difficult 6 weeks. Robert was admitted to the hospital on 12 June, and everything has been a roller-coaster since then. He has been fighting very hard and showing an unbelievable amount of strength. I hope you all keep him in your thoughts…
Rob had gone to work at a theatre festival called Terschellings Oerol Festival. While he doing building work he had a seziure. The following day he was taken to the hospital and told he had bruised his ribs, but was otherwise fine.
After returning home it was clear to me that something more was wrong than brusied ribs. Unfortunately, we were unable to get an appointment with our GP. After a lot of monitoring the situation with him, late in the night of 11 June he finally agreed to go to the hospital (with the help our friend Sjef to convince him to go).
After a few hours of investigations and tests, it was determined that he had some type of an intenstinal obstruction, and that surgery would be needed to clear it. He underwent surgery on Friday, and it was determined that he had “Volvulus Caecum”, which is a twisted intestine — the ascending right lower part of the large intestine. It had rotated so extremely that it had moved to the upper left under his ribs, and he also had a large perforation in the caecum.
They were able to rotate the intestine back and repair the perforation, and overall, the surgery went well. Unfortunately, the perforation caused insidious complications resulting in septic peritonitis and then septic shock.
Because of infections, Rob had 2 more surgeries. The second was a few days after the first, and was mainly to do more cleanup and check for other perforations. Luckily there were none, and it went well. At the end of July he had his third surgery, which was much more extensive. Basically they took everything out to check for more perforations, which luckily there were none, and also re-sutured him and took out some adhesions. Rob now has about a 20 cm incision with 3 sets of staple marks! I think his new name around here will be “Rob ritsbuik” (zipper belly).
All of the conditions have been stablised, with the exception of the pneumonia and general infections, which he still continues to fight.
Due to the Thrombosis (blood clots), it has also been determined that Rob had a cerebral infarction (brain ischemia/stroke) shortly after the surgery. We will not know the extent of this until his general medical situation is better. We know his left side was affected — he is able to feel, but not yet use his arm/leg. There is good reason to believe that with a lot of rehabilitation, his prognosis is good.
The complications are too many and difficult to explain in detail, but here is an overview:
His mental state is good, and he is quite aware, but not yet able to talk a lot. Much of this has to do with the tracheotomy they did to help him breath with a ventilator. He was also sedated for about 3 weeks, which caused a lot of muscle loss. We think this will be a matter of time and rehabilitation.
He is able to answer questions, and is aware of all that has happened and seems to have a positive will to keep fighting. He smiles beautifully, and can let it be known if I put bad music on, or heaven forbid, one of the nurses puts football on TV (he hates it!). He also seems very positive and has not become sad about the situation. That is so important, especially with the long and hard rehabilitation that lies ahead.
I hope you all continue to send your healing thoughts to him. I’ll be able to show him all the well wishes he receives on the blog sometime soon, so please don’t hesitate to comment or e-mail — they do him a lot of good, and really help with his recovery.
