Update: December 23
And just like that, 2022 is almost over.
It was a great year, another year without headaches! Very happy and grateful for that.
It is also a year in which we again learned a lot about the world of children with long-term illnesses.
In September I already wrote that it was difficult around school. That is still the case, unfortunately. It has been playing a major role in Zjuul's and our lives for several months now. So this time a bit of a negative edge to this update.
Last school year went great, with good consultation and good guidance. At the end of last school year, we met to discuss how we were going to tackle this school year. Everything was ready, would be handed over and so Zjuul could take steps on the same foot because this way seemed to work. Unfortunately, it didn't work out that way and Zjuul had no education for 9 weeks. We just couldn't manage it ourselves and had to pull all the strings we could find to get education anyway. After the intervention of others, Zjuul eventually started at school with 2.5 hours 3 times a week. The rehabilitation center would also be involved for extra help and guidance for Zjuul and school, but in the end they turned out not to be able to do this. Which is a huge setback, after all, this trajectory for help for school had been running for more than a year.
Fortunately, we found a good remedial educationalist who was able to examine Zjuul and see exactly what Zjuul encounters at school and why he is so overstimulated at school. She has written a very nice report, in which we recognize Zjuul. She has specific solutions that can be used at school. This is now also being done, but it is still not running smoothly.
We are starting the new year with an organization what has been invoked by us, that will look at what can be done differently and better in terms of school, they can help find suitable help and will also see if there are better solutions. They are a kind of advocate for the student. After 2 years of searching, we now hope to get another push in the right direction. Because appropriate education is not suitable (enough) for Zjuul at the moment. Hopefully we will continue this way.
Now the positive and most important:
Zjuul is doing well. He is still headache free!
At home we hardly have to take into account the overstimulation anymore. He run from the sound of the vacuum cleaner. Zjuul is still making progress, growing like a weed, is increasingly able to indicate what his limits are and what he needs if he has crossed his limit. He likes table tennis very much and trains weekly. Loves jokes. Likes to piss off his brothers. Enjoys cycling. He enjoys his life and is very aware that his life could have been very different.
Dear people, thank you for all your support and help in recent years and even now! Make it a fun holiday and a super 2023!
Update: October 29
October 29, 2020, the day Zjuul was operated on. It's been 2 years already. 2 years without a headache! 2 years of training, rehabilitation and building. And still he is moving forward!
Update: October 23
2 Years ago on this day Zjuul got his Halo. So Zjuul is headache free for 2 years today!
Update: 10 september 2022
The day Zjuul became a high-flyer pilot!
What a great day! Zjuul started the day by registering at the fire station. There he was given a drink, a t-shirt and a cap. Then he went in the fire truck to Lelystad airport. Where he was allowed to register and was given a number linked to a pilot.
Because the day started with bad weather, the flights were delayed. But there was plenty to do in the hall and outside. Zjuul has looked inside and outside the police helicopter and airport fire truck. Nice to take a closer look and see what buttons and things are inside.
You could also play shuffleboard, face painting, view a restored helicopter, and decorate a rocket that you could use outside and fire with the use of a scaffold and bicycle pump. Outside you could make a round with American police cars and motorcycles. And in between, lunch with fries, a snack, and a drink at “Fries from fireman Piet”.
We ended the day with pilot Gerard with a flight over Putten, Elburg, Kampen and Lelystad. Zjuul was also allowed to fly the plane!
All of this was taken care of by the Hoogvliegers Foundation and all the volunteers!
Thank you very much for the very nice day!
Update: Summer Update 2022!
The summer holidays are over for a while, but here comes the summer update.
Zjuul had a great school year. He started group 5 with full home education and concluded with 2.5 hours at school 3 times a week, of which 2 hours in class! All this by slowly building up and a good team around Zjuul. Namely: OZL teacher, 2 teachers, education assistant and ib-er.
Zjuul has done a lot of fun things during the summer holidays, but especially a lot of relaxation. We went to the south of France with the family. Where Zjuul needed 2-3 days last year to recover from the travel days, this year things went much better. Sit down for a while, have a drink and then quickly get your swimming gear together to go to the lake. There were kayaks and supboards that could be used freely. Even after an activity, he recovered much faster than last year. The difference was clearly visible. After our vacation, Zjuul was ready to start school again.
Zjuul is now in group 6. Where things went smoothly at school last year, things are not going well now. This causes a lot of unrest and worries. For his overstimulation, Zjuul will receive extra help from the rehabilitation center from this school year. This team, together with his OZL teacher, Zjuul, and also the school will help with the further construction. Hopefully we can take steps again this school year. And soon everything will run smoothly again.
Update: Four Days of hiking 2022!
Zjuul closed the "avondvierdaagse" tonight! (That's an event where children walk 4 nights in a row.)
Who would have dreamed that 2 years ago?
Last year he walked 4 x 2.5 km, this year 5 km. Gathering at Stroud with many people and a lot of noise was too much for him, but waiting for a quiet place with hearing protection and then joining the others went well. Tonight, the 4th evening, he made it to the assembly point on the heather and got out. Not surprising with so many spectators and noises. He should be very proud of himself!
Juni 2022: Update
Dear loyal followers,
Thank you for your interest still! It does us good…
It's been a while, but it's going well. Zjuul is still without pain! We are still building up with going to school. Zjuul has recently started going to school for 2.5 hours 3 times a week. First 40 min in the classroom, then work outside the classroom with the OZL teacher or the teaching assistant, then take a break with the whole class and play outside and then another 40 min in the classroom. In the beginning it is always exciting “Is he going to make it?”. A new schedule is always accompanied by extra fatigue and overstimulation. Zjuul really needs his rest and rest days to recover.
The school year is almost over. Zjuul has achieved a lot. Even though it may seem like small steps, the steps are still forward. And of course the sun doesn't always shine, he also sometimes has days/moments/periods that it isn't working. That requires a lot of flexibility. Especially from him, but also from school, physio and also from the family. We now have a good team around Zjuul and hope it stays that way! We live each day and see what it brings us.
The overstimulation is still there and it still prevents him from going to school all day long. He is still undergoing treatment for this. He has had an examination and we have had some conversations, but we have not yet been able to find the solution or answers. We keep looking and keep our eyes and ears open. He moves forward. For example, he can now wear short jeans and on good days socks with a seam!
Zjuul recently fished. Something he had been looking forward to for a while. See the result here!
January 2022, Up-date
In mid-November Zjuul started going to school again! Class contact went so well that we could take the next step.
He went to work with his OZL teacher at school once a week, together they did what he did at home. So not yet in the classroom, but really separately. Especially to get used to going to school, the noises of school and the other environment. The OZL teacher also comes home to work with Zjuul for 1 day. It went very well and Zjuul really liked it, so we could take the next step again.
At the end of November we started going to school twice a week for 2 hours! 15 minutes of which in class and the rest of the time he works with his OZL teacher and the teaching assistant. The OZL teacher now only comes to work with him at school. He loved it and it went really well. Such a huge step forward again. And where things went wrong very quickly at the beginning of last year, things are now going well.
After the Christmas holidays, when schools are allowed to open again due to Due to the lock down, Zjuul goes into class for 1 whole hour lesson. After class he will work with the OZL teacher or teaching assistant and after that… Play outside with his classmates! Zjuul is really looking forward to this!
With the entire team around Zjuul, we always look at what works best for Zjuul, what he needs and what he can handle. This works very well for Zjuul. But this is only possible if you have a team that is willing to look at Zjuul and think along. He's really hit it off right now.
We hope that Zjuul can continue to make such great strides in the coming year.
A very good, healthy and happy 2022 to everyone!
The photos below: Happy with his surprise received at school. And the school picture.
November 2, 2021: Check up
We ended our day at the hospital. First the ct scan, the device had some hickups, so Zjuul had to switch to another ct. But it worked. Later in the day we had a conversation with the neurosurgeon. Zjuul is completely fused! Everything looks good. He can now take off his collar completely! Zjuul is very happy with it: no more collars during car rides, playing outside or cycling. Another step closer to "normal".
Explanation of the photos, from left to right: The air conditioning does not work in the hotel room, but Zjuul had a solution for that. For Teknon, with the thumbs up. We went to Schiphol by train and the chair was very comfortable, tried it with the eyes closed. In the aircraft engine at Schiphol.
29 Oktober 2021: 1 jaar update!
Vandaag is het een jaar geleden dat Zjuul werd geopereerd. Een jaar zonder hoofdpijn! En laten we hopen dat het zo mag blijven.
So much has changed in one year…
He is pain free.
Can rejoin family life.
No more lying on the couch all day.
Can play with friends again.
No longer extremely tired.
Drinks normal amounts again instead of extra much.
No more leaking urine.
No more heat intolerance.
No longer beeps (tinnitus).
Hear better again.
No longer sees small (micropsy).
Is no longer dizzy.
His concentration has improved.
Can play with 2 hands again and with 2 things at once.
Can follow the instruction of the Lego again.
He changes teeth again.
Has grown 3 shoe sizes in 1 year.
Now in his 4th clothing size, in 1 year.
Can wear clothes all day long.
He still has his:
EDS (Ehlers-Danlos Syndrome, connective tissue disease)
Scoliosis (bend in the back)
EDS, Scoliosis and muscle weakness will remain, forever. But this is very good to live with, as it is now. He trains the muscle weakness with physiotherapy, so his legs are now about the same strength.
But we do hope that the overstimulation will improve it so that he can go back to school, he wants so badly. The overstimulation still hinders him in what he does and still determines his daily schedule at the moment. The overstimulation arose in the last year before the operation. It is thought that this is because his cerebellum and brainstem were so oppressed. We have not yet been able to find the medical knowledge in this area, we are still hitting walls in that regard. But keep looking. His rehabilitation is 6 months to 2 years. As long as nerves can take to recover, so we still have hope. Also because he is still improving. It's slow, but he's making progress. He and we are guided by his occupational therapist with the overstimulation.
Next Monday, Zjuul and Sascha will go back to Barcelona. The ct scan that was made in the Netherlands is unfortunately not of good quality and was made in the wrong position. As a result, it cannot be assessed by the neurosurgeon in Barcelona. Tuesday they will make a new ct scan, the neurosurgeon will examine him and we will get the results. On Wednesday they travel back home.
The past year has been tough. We've had a lot of hassle here and there and still do, fortunately to a lesser extent at the moment. But Zjuul has worked very hard and he has always committed himself fully. There hasn't been a day when he went completely into the anchors. Of course he sometimes didn't feel like schoolwork or physio, for example, but so far he has done everything that had to be done. Without pressure from us. He is such a tough guy and a very hard worker. We as parents have deep respect for how he does and has done. And are proud of what he has already achieved.
Wat wij voor Zjuul wensen: Dat alles zo goed mag blijven gaan. De overprikkeling nog verder verbeterd en hopelijk gaat verdwijnen naar de achtergrond, zodat hij weer helemaal in het normale leven mee kan draaien en dus weer naar school kan.
Thank you very much! For all your support, trust, help, donations and kind words in the past period! We've said it in previous posts, but that doesn't make it any less true. Without your help, Zjuul would not have come this far!
The Instagram page will eventually disappear, but the Facebook page and website will remain. The updates will no longer be once a month, but we will keep updating. To keep you informed, but also to spread further knowledge.
In the photo you can see Zjuul during Klassecontact.
26 augustus 2021: Update
It took a while... But here it is again: the update.
Zjuul had a good holiday. And more importantly, he came out of the holiday well!
After the holidays, Zjuul continued with his home education. Because he went so well at the end of last school year, he immediately started with 2 extra subjects. That's going well! Zjuul no longer has a separate agenda, but works with the same agenda as the class.
It is even going so well that Zjuul has started with Klassecontact again! With Klassecontact, he can log in to the class so that he can follow the lesson with the class and to feel connected to the class again. Zjuul will do this for 15 minutes twice a week. If this goes well for a few weeks, we can expand.
Last Thursday was the first time. Zjuul was totally hyper, he really liked it! And it went really well too! He was even able to go to work immediately after the Class Contact. This gives a huge boost. We have worked very hard to get this far, but also to make this next step successful. Fingers crossed that everything can continue to go well 🤞🏻..
August 2, 2021: Vacation!
The holidays are in full swing! Zjuul is doing well. Before the vacation, he had a children's party and that went well! No recovery period of a few days, but “just” fit again the next day.
Physio continues during the holidays. But he has no schoolwork and that leaves more energy and time for other things. Balance bikes, cycling, swimming, climbing the forest tower and of course resting (with a jar of candy).
Next school year he will start in group 5. Zjuul will start with home education, but we hope that his overstimulation has improved so that he can try to go to school again.
Happy Vacation everyone!
27 juni 2021: Update
Zjuul is doing well. He is still pain free! He is also still making progress with his rehabilitation and is still up to date with his class in terms of schoolwork. At the moment Zjuul is making great strides. When he is tired/overstimulated, the valleys are no longer so deep and he recovers faster, finally. He is becoming more and more quick with his jokes and can also take jokes better. Zjuul has more color on his face again.
However, Zjuul still suffers from the heat. He is then very lethargic, tired and cannot think clearly and is also slow to think. His excitement hasn't gone away yet. It's still improving. But the overstimulation still prevents him from going to school. He is overstimulated in terms of sight, sound and touch.
Last week, for the first time since January, he was again interested in playing with a friend and that went well. He kept it up! When he got home he had to take some rest, but the next day he was fresh and active again. The next play date is already set!
We went to the rehabilitation center to have his bike checked. The posture he had on the bike was not good, also the bike was on the small side. On the way home he still had energy left to go to the bicycle repair shop. Zjuul was very lucky, because there was a 2e hand bike that exactly met the requirement. Just put mirrors on it and check everything technically and go! He is very happy that he has some freedom again. We have cycled to the market and the forest a few times.
Zjuul's adapted chair has arrived. Zjuul has, among other things, scoliosis (a curve in his back), which makes him like to lie on the couch like a wokkel. With this chair he is supported so that he cannot slump and cannot sit at an angle/crooked. This chair also has a reclining position so that he can lie down and rest better. Just clamped the tablet on as standard, for some pastime. His balance bike came from the same company. Very nice for the days when he is tired or would go for long walks. This way he still has the movement, but it is less strenuous.
Zjuul was sorry that the evening4daagse was cancelled, but luckily there was the Home Edition. Here you can decide for yourself when you walk it and you can determine the route yourself. On the days that Zjuul has no physio we always went cycling, but now we walk the evening 4 days. 2.5 km per walk. Good training for him, which he enjoys doing.
We also went to the physio on foot once, 600m. For many people these are small normal things. But there's so much to it that many people don't even remember. First you have to rest before the physio, then pee and get dressed. The seams of socks and clothing are still annoying, then those shoes that, in his opinion, are tight. Then, in this case on foot, to the physio. Notice how many things you hear, see and smell around you when you walk down the street. He receives this x 300 and “his door” to close himself off cannot be closed, that is tiring. Along the way, he's already thinking about what he's going to do: “Should I get back on the treadmill?” “Mom, do you think I'm going to beat Merel at badminton this time?”. Then 40 minutes of hard work in a room where others are also training. The radio and lamps already go out, during ground exercises he puts on his sunglasses due to the lights and when he is busy, he wears noise-canceling earplugs. Meanwhile, the physiotherapist tries to focus only on her and has him work with his face to the wall as much as possible, so that he gets as little as possible from others. Then go home, walk again. Let's rewind his story: “The treadmill wasn't tilted any more today and I didn't have to run.” “Did you see me hit that balloon? Merel couldn't catch him anymore." When you get home, take off your clothes and shoes, pee, have a drink and rest before the next item on the agenda. With the car the incentives are not less, in fact even more and more intense. The sound of the car, movements that you have to anticipate, the image flashes by even faster and therefore has to be processed faster in the brain and then all the stimuli that you also have while walking.
We are proud of how Zjuul is doing, she is a go-getter. But we are also still very grateful that Zjuul can do all this because of your help!
Tuesday May 18: 3D images Zjuul
Here the 3D images of Zjuul, 6 months after the operation, an artwork by Dr. Gilete and Dr. Oliver ...
Wednesday May 5: 6 month update
We have had the 6 months check!
Dr. Gilete was very satisfied. Zjuul his donor bone has grown well. The collar may now be phased out, but with activities such as cycling and driving a car, the collar has to be kept on for the next 5 months, just to be on the safe side.
He will have to keep training his muscles in his back and neck properly for the rest of his life. Because the bone is weaker due to the EDS.
Dr. Gilete hopes never to see us again, because that means things will keep going well.
Sunday April 4: 5 months update
It has been 5 months since Zjuul had surgery. It's going fine, Zjuul is still pain free! His wound looks nice, you can hardly see it. Going to school is too much and Zjuul has stopped doing that. Going to school still provides too many stimuli for Zjuul. This may be due to the sounds, movements and / or the light in the classroom. The preparations (eating and dressing) and the trip to school are already intensive for him. We already made sure he had time to recover from the preparations before we left for school. But unfortunately that was not enough.
Together with physiotherapy we will find out what stimulates him and how we can help him with that. The consultant comes twice a week. When Zjuul has recovered from the past few weeks of school, he can also do school work at home. He starts talking again and sits a bit more on the couch instead of just lying down. So he is going in the right direction again. He had received beautiful crafts from his classmates, all the children had decorated an egg for him. Thank you!
Last week we went to the rehabilitation center. They were very satisfied with the network that we have around Zjuul. The doctor also confirmed that the overstimulation really disappears. It takes time, but it will be really fine. They also thought it was only normal that Zjuul suffers from overstimulation. A lot has happened and been done. Very nice that she confirmed that. We now only have to go back to the rehabilitation center once. Then they look at Zjuul's bike and what they can do in terms of adjustments so that he can cycle himself again. Since he cannot turn his head, he cannot look around properly. Without adjustments he cannot safely participate in traffic. Furthermore, the rehabilitation center remains in the background, so we keep the therapies nearby. Very nice!
We are slowly building on Zjuul 2.0, we are on the right track ...
Wednesday March 17 Update: School
Zjuul has started his 3rd week of school. He likes and enjoys seeing everyone in class and going back to school. So we already won that! Zjuul now goes to school twice a week for 30 minutes. That doesn't sound like much. But it is (too) much for him. He gets over-stimulated by everything that happens in the classroom in terms of sound and movement. But also the effort of getting dressed and the journey. Despite the fact that we still have an empty agenda, he cannot make it to recover from the school week before the next week.
Zjuul lies on the couch a lot again instead of sitting, cries for the smallest things and sometimes cries without knowing why, no longer feels like doing things or playing with his brothers / friends, no longer tolerates clothes or shoes, can't manage to do schoolwork at home during the rest of the week, next to school, etc. We will look at it this week and next, otherwise we will wind down again.
Overstimulation what is that?
Zjuul does not have congenital brain damage because, among other things, the brain stem has been oppressed. There is a protective layer around a nerve, a kind of filter through which stimuli enter in a dosed manner. With him, that layer is broken, so everything comes in hard and not dosed. The brain has trouble processing this and then stops the body: by means of freezing (Zjuul then falls silent in the middle of his work and no longer knows where he was and how to write something). Zjuul now has a small thin crust over the damage / wound. If he is OVER-stimulated, that scab will be scratched off, if you keep scratching that scab off, the wound cannot heal properly, it will become an ugly wound (and will remain overstimulated, for the rest of his life) or a wound that never heals. We want to prevent this at all times and so we must prevent him from being OVER-stimulated. And so take a step back if it stays that way.
Wednesday February 17: Update!
Today Zjuul was at school for a while. Because his table was delivered! His chair was not ready yet. The loan chair from home is now at school so that the set is complete and he can go to school. The table is adjustable in height and has a tiltable top that is magnetic. With the magnets he can put his work at eye level.
After the holiday he starts with 2x half an hour a week. We will then slowly expand that. In addition, he still has homework, guidance from the consultant and online lessons.
The class welcomed him again today. The children had made a flag line and the plate was decorated. Very nice, thank you! Zjuul also hit the jackpot, because there was also a birthday boy and so a treat!
Friday February 5th: 3 months update
Zjuul has been operated on 3 months ago! It is going very well. Zjuul is still pain free! And feels good. At the moment it seems that even the heat intolerance is reducing. Zjuul has been able to wear clothes in the house for a few days without breaking a sweat.
Under the guidance of the consultant, Zjuul worked hard and made up 5 months of school behind. He picks up the new teaching material well and quickly. Very nice for him. When school starts again, he prefers to go back on his bike. He has already checked whether that was possible. But that is still too far and too much for the time being. He is also unable to cycle freely in traffic because he cannot look around. We hope to be able to tackle this with rehabilitation.
From now on, the collar may be removed. He now only needs to wear the collar for activities and driving. This is because there may be unexpected movements. Zjuul still has to get used to his new rules of life, but especially to his new posture now that the collar can be taken off. For example, he must keep his neck straight and then automatically straighten his back. It is also better that he does not move his neck, he had already learned this before the operation. He would then have to turn his whole body to grab something next to him, for example. This is all to prevent instability further down the neck from occurring and therefore having to be further fixed.
We have put 2 photos next to each other to show that there is really a difference in neck length. Of course he has grown and changed. But before that he actually had no neck. And now it is. Can you see it too?
Saturday January 9, 2021: Update!
Zjuul himself received the money raised from the bottle campaign !! € 286.75 Thank you Jumbo Nijkerk and everyone for donating !! 🥰
Saturday January 2, 2021: New year
We wish everyone a good, happy and above all healthy 2021!
Tuesday December 15, 2020: Update!
Zjuul was operated on 6 weeks ago.
How is it going?
Still fine! Still Pain Free !!! He is now, with the help of aroma therapy, rid of his worst fears. And that makes sleeping better. Since Sunday he no longer sleeps on the mattress next to our bed, but in his own room. He does not fully agree with that, because alone in a room is very much alone. Yesterday he had stayed awake until we went to bed too. Stijn heard that and then moved him to his room. Zjuul was lucky!
Zjuul has now been busy with school for a week and a half. And it is going well. He is guided twice a week by a Ziezon consultant. Together they go through what the assignments are and she gives extra explanation of the things he finds difficult. And if necessary, she will give there if necessary. additional assignments for example, he had forgotten a bit how to write the numbers and how to make some connections with writing letters.
In terms of teaching material, he started at the beginning of this school year, group 4. First we have to see where he is in terms of level. He didn't have to go back any further. But could already skip things. Now it is mainly looking at what has stuck? What does he have trouble with? And give him confidence and pleasure in school again. Because that pleasure is really gone and often hard to find. Quite a challenge ... There is good hope that he will be up and running in early February and can really go to school. And is therefore not only medically ready, but also in terms of school work. Hopefully his furniture will be there. At home he already has a desk with an angled top and since this week Zjuul has had metal foil on his top so that he can use magnets to fix his workbooks at the right height.
Zjuul's wound looks very good. There was still a little swelling that made the cut look crooked and there were 2 subcutaneous sutures that wanted to get out, but they allready retreat. Because those are small connections with the outdoors, we cannot start swimming yet. You don't want to think about an infection getting there, brrr! We already do some exercises to train his neck muscles, these are exercises that the neurosurgeon has given up. Every day we lubricate the wound with special scar oil to keep the skin nice and supple and itch-free and to let it heal beautifully
Until the next blog!
Tuesday December 8, 2020: Update
The goal has been achieved !!!
How special… What a special experience it was. So many people who have donated, people who know Zjuul, but also total strangers. Help was offered from the most unexpected angles for the most diverse things. Some came with meals, others offered help with school / laundry / shopping / etc ..
So many messages, cards and mail. Unimaginable! It was one big rollercoaster ride! A very tough period… but if all goes well, we will now be in calmer waters and we can continue to focus on the rehabilitation of Zjuul and take our rest to recover.
There will be promotions: a bottle coupon promotion at the Jumbo in Nijkerk and the auction of a number of miniatures. The operation has now been paid for. The money that is still coming in will be for the check with 6 months. And what remains, as stated in the policy plan, will eventually be donated to a similar foundation. We continue to blog about Zjuul's rehabilitation.
Thank you very much for your help in whatever form, it is impossible to put into words how grateful we are! You made the difference!
Arno, Sascha, Stijn, Mart en Zjuul
Friday, November 20, 2020L Up-date
Quarantine is over! Since yesterday we were allowed to be among the people again.
Zjuul had the option to take 1 address with his father in the truck. He had already been looking forward to that because Arno has recently had another truck.
As you can see, the chair is comfortable.
Friday November 13, 2020 : How are things now and what actually happened?
It is going very well. Zjuul is still headache free! And that's incredibly nice for him and still incredible for us.
We were always told by the Dutch doctors and professors that it was an inexplicable headache and that he had to learn to live with it. We are so happy that Zjuul doesn't have to learn to live with it! We are very grateful to all donors and people who have helped Zjuul in any way whatsoever ...
But what has actually been done? I was hoping I would have an X-ray to show, but it's still missing, but coming.
First, Zjuul got the Halo on October 23 to see if a cervical spine fusion would help for his headache. This was mainly because a fusion of the cervical vertebrae is not a minor operation and the consequences are for the rest of his life. With the Halo, Zjuul's neck and head have been put in the right position. The EDS has slackened the ligaments of his neck and there was instability of his cervical vertebrae. This caused his skull to sag over his neck.
With the Halo, his neck and head have been brought to the normal position. It was immediately clear that the Halo was helping Zjuul. He woke up from anesthesia without a headache. He was, however, very nauseous. That was probably because his brain had to get used to the new place. Zjuul still had a headache with exertion which would be resolved with the decompression operation. Because the Halo helped so well and the Corona numbers continued to rise in Barcelona, they proceeded to surgery more quickly.
Zjuul was operated on October 29. A decompression has been done. Then an edge of the skull is removed to give space to the cerebellum. So that the brain fluid can flow freely again, it was now blocked by the cerebellum. And he has had a merger of C0-C2. This means that vertebra 1 (C1) and vertebra 2 (C2) are attached to the skull (C0). This is secured with pins, screws and donor bone. The pins and screws already provide a stable connection, but the donor bone will ensure that it will soon be a solid block.
Due to the merger, Zjuul has about 50-60% less mobility of the neck and will therefore need lifelong adjustments, for example at school. Everything has to be at eye level because he can no longer bend his head far down, so a table with an oblique top. He can no longer swim normally and will have to learn a new technique for this. If something happens next to him, he will have to turn his whole body instead of just his head. Those are things he has to get used to.
Zjuul woke up very well and without pain. Which is very special because this is a very heavy and painful operation. And it kept going well! We had to prepare for 4 horror days with a lot of pain and discomfort. But he was spared that. On October 31, he was already sitting next to his bed and had already walked a few steps. More was not allowed yet, but he certainly could. The doctors were amazed at his great recovery and that he was pain free. The medicines could therefore be quickly phased out. And Zjuul soon wanted to go back to the apartment.
Finally, we were allowed to return to the apartment on November 3. Without painkillers! November 6 we had to go back for a check-up and Zjuul got his fit-to-fly statement. In the meantime, the desire to go home was already so great that we arranged a ticket for the next day and we arrived back in the Netherlands on November 7 in the evening! Nice in our own environment and the family complete again.
Now that we are home we only have days of rest. Refuel from the past 3 weeks in Barcelona which have been a rollercoaster in terms of crowds, emotions and in which we have been unable to sleep much. Zjuul is still doing great. His father and brothers could already tell the difference. He looks fitter, is less tired, talks more smoothly and smiles a lot more. Zjuul was better on the way back than on the way there. That was a very clear difference!
3-4 weeks after the operation, we hope that Zjuul will gradually be able to pick up school again online via Klassecontact. He is not allowed to go to school for 3 months now because the bone must first grow properly. He also has to wear his collar for another 6 months. Rehabilitation is about 6 months to 2 years.
We keep blogging! Not on a daily basis, but we certainly blog changes and nice updates and are also posted on facebook.
Crowdfunding is also continuing. We're not quite there yet. The final amount is € 90,000, because all operations are now done in one go. The first plan was that he would come back for the merger after 3-4 months. But the additional examinations showed that his neck needed to be tied now.
Thank you again for all your support and help! We hope you will continue to do so. We can never thank you enough. You gave Zjuul his life back! From the bottom of our hearts: Thank you!
Saturday, November 8, 2020
We are home!
The journey went well and without any problems. Zjuul and I will now be quarantined for 10 days. Good time to get used to normal life again.
Home Sweet Home!!
Friday, November 6, 2020
YEAHH, Zjuul has been approved and has the fit-to-fly statement! The doctors were very satisfied with Zjuul and hoped he would soon have a normal life again. Enjoy playing with friends, without headaches!
Tomorrow evening we will arrive in the Netherlands again!
Thursday, November 5, 2020
Yesterday we didn't do anything at all. Had a nice pajama day! A break from everything that happened in a fast train and from all the hustle and bustle that was in the hospital.
I just changed Zjuul's wound. His 16 stitches look great, no swelling or redness. So neatly cleaned and covered again with a special wound plaster.
Furthermore, Zjuul is still doing very well. Still no pain! Wow, what a relief that must be for him. He gets a little more talkative and is a lot more active. I don't have to help him with anything anymore: gets up by himself, gets out of bed and can go to the toilet on his own. And in terms of normal daily things too: Take a drink himself, for example. While that was already too much before.
He is still scared. When he goes to sleep he is afraid of having to go back to anesthesia and is always startled awake. He falls asleep peacefully as long as he has contact with me. Usually he holds my hand or crawls right up against me. Things are getting better, because he continues to sleep. So that last bit will be fine too, but it will take quite a while. It was also not nothing what happened in 2.5 wk.
The last check here tomorrow. And we expect to receive the fit-to-fly statement along with some final advice. And then we come home with the first possible flight. Not only because we like to come home, but also because the doctors advise us regarding this because of the Corona that is spreading pretty quickly here at the moment. At home we will have to quarantine for 10 days. Go home after (almost) 3 weeks, so nice! While we had thought that we would be away for at least 5 weeks.
We have received quite a few greeting cards here in Barcelona! Very nice, thank you!
Tuesday, November 3, 2020
We are back in the apartment! Zjuul still has no pain and still no headaches!
We were released from hospital this morning. Just a few more prescription medication and the final instructions. In the coming months, he must wear his collar while sitting or standing, so that the donor bone has the opportunity to grow properly. In the meantime, keep training those muscles.
On Friday we have a check-up in the hospital. Zjuul couldn't wait to finally race his remote-controlled car. He had nowhere to go with that car in the hospital room. So now racing through the living room and hallway at full throttle. He is very cheerful, not tired, feels like doing things again, chats his ears and jokes again. So great to see!
Monday, November 2, 2020
It is still going unimaginably well! This morning the neurosurgeons came by to see Zjuul. They are satisfied, more than satisfied. He has a great recovery! Not as normal after such a heavy and painful operation.
He is now off all infusions and as of today only receives paracetamol in tablet form. Is that going well? Then he can go to the apartment tomorrow. At the end of this week, Zjuul has to come back for a check-up.
Yesterday he started playing again! He hadn't done this since December at least ...
Sunday November 1, 2020: Update
Zjuul is still doing very well, he is still not in pain. Yesterday he sat in a chair for the first time and immediately for 20 minutes. The doctors are amazed that things are going so well. One of the neurologists said: “He has had a very heavy, painful operation. But he has a great recovery! ”
This morning before breakfast he has already walked a whole round in the hall, without any difficulty. With the Halo he got no further than the nurse station (which was 1 room away). Today there is consultation about the drugs and probably a switch to oral drugs.
Zjuul still has to get used to his “new neck”. He is still looking for balance with his head. But he does likes it.
And he is still happy.
Glad he is headache free.
Glad that he doesn't have to wear the Halo anymore.
Glad the surgery is over.
Friday, October 30 2020: The day after
Zjuul is doing well. He had a good night, is pain-free and not nauseous. Last night he really woke up and I told him again that the operation was done and everything had gone well. He replied, "I am so happy!"
If all goes well, Zjuul will soon be allowed to go to the ward.
Thank you all for all your messages, comments, thoughts, thumbs, prayers and your help!
Thursday, 29 October 2020: Update!
Around half past six the report was there that the operation was over and that it had gone well according to plan! What a relief! Zjuul could breathe independently again and would go to the Medium Care Unit instead of the Intensive Care Unit.
But as has happened so many times this time in Barcelona, this plan has also gone differently. Unfortunately, there was no place left in the Medium Care and Zjuul was transferred to the Intensive Care unit. Sascha can just stay with Zjuul in the ICU.
More news tomorrow!
Thursday, 29 October 2020: THE day!
Zjuul is sleeping The operation will take 4-6 hours. Then he goes to the IC. He will be under anesthesia until at least tomorrow morning. We are confident that we are on our way to Zjuul 2.0 . We will keep you informed…
Tuesday, October 27, 2020: Big Up-date!
The Sunday night on Monday was awful! At about 1 o'clock I woke up from Zjuul scraping his legs over the bed. He didn't have to pee, but he was itchy under his halo. (He had had that too from Saturday to Sunday and it was quickly dissolved with a special skin oil). I had rubbed it with the special oil before going to sleep, hoping to prevent this. So smeared it again. That didn't help! Called nursing and they have tried 3 or 4 drugs with 3 women, and also with ice. But nothing helped and it only got worse.
Ultimately, the pediatrician was called. He has given an anti-allergy agent (antihistamine) And said that this should help with an hour of ! Zjuul screamed and cried the whole department together. Imagine that you have itching and you will not be able to reach it… Fortunately it helped quite quickly and the itching decreased. In the meantime, the nurses had prepared a paste of water and talc and smeared it under the Halo. Finally the itching was gone! And did he sleep from: 3am to 8:15 am.
Monday morning, Dr. Gilete and Dr. Oliver came with the ward doctor to see what else they could do about itching and to see progress. His shirt had to be cut out and now there is a clean piece of cotton in between. He gets a prescription for an antihistamine.
Then we were allowed to go to the apartment! Zjuul was eating and drinking better in the meantime. And was still headache free! Last night he slept super, no itching! And for 11 hours straight.
Today we went back to Teknon. First we saw Dr. Gilete. He could now see how Zjuul walked and how his posture was with standing and walking. He was very satisfied, also to hear that he is still headache free and that he is progressing well. To the ophthalmologist for a check-up and a pcr test (corona). Then back to the clinic to do another MRI. Yes with iron screws and all. Only the MRI had to be adjusted, his crown did not fit in the preformed cage. But it went great, beautiful picture. This was a first time for the radiologist. So he was enthusiastic about the result.
After all this it was my idea to go to the apartment. But sir wanted to do some shopping (carrefour hypermarket has a large toy department). I was very surprised… He kept it up super and was not tired even after that. Really a huge difference wiht post Halo. Before he got the Halo, he also had such an examination day and slept twice in between: 1x in the MRI and 1x on my lap. So today none and did not care about it.
There is now also an operation date! Thursday, October 29…
Zjuul says: “I'm looking forward to it but also I'm not. Well because after that, I am ready and can get back on the lap to cuddle. And not because I have to go under anesthesia again and find that scary. ”
Tomorrow a rest day, my phone will also go on silence mode.
P.S.: At one point today, Zjuul forgot he was wearing a Halo. That shows how flexible such a child is. Very capable and I have a deep respect for how he does all of this without complaining or drama.
Monday, October 26, 2020
We are back in the apartment! An extensive update will follow tomorrow.
Anyway, Zjuul has found his place on the couch. And in the absence of a bed table, I pushed the sofa under the glass dining table.
Sunday, October 25, 2020
Today we were not allowed to go to the apartment yet. Zjuul still drinks too little and is still still nauseous from time to time. Nausea can also be because everything is different now in terms of head and neck.
But… he has been out of bed for a while, sat on the couch and chair. And walked a bit to view the bathroom. He has also seen the view.
Do you see the sea?
Saturday, October 24, 2020
Here again an update.
Zjuul was not released from the hospital this morning. He continued to be nauseous and vomiting. It stopped around noon and he feels better. He is drinking small amounts again and has eaten some dry biscuits. He also has some talk again.
- He still has no headaches!
- And he can do things again with 2 hands at the same time. For example, today he put together 3 Lego structures.
- Without a break! And Zjuul was not tired either. Only his arms were tired, but that makes sense, he now has to do everything above his power to have it in sight.
We hope to be able to go to the apartment tomorrow….
Friday, October 23, 2020
Today was the day of the Halo placement. The questions we've had lately: How would it all go that day?
How does he feel with the Halo?
Would the Halo really help?
Are we really on the right track now?
This morning we had to report early, 7:20 am. Amy (Dr. Gilete's assistant) welcomed and guided us through all the offices. Zjuul was first admitted to the children's ward. Just measure blood pressure, saturation and temperature. And then down. There Zjuul went to the preparation room and I had to quickly go to the dressing room to return in an operation suit with blue clogs. He was soon allowed to go to the OR. There the doctors were ready for him.
Everything was explained to him again and then he was put on a mask and fell asleep quite quickly. When he was asleep they put him on an IV and I was allowed to go. I was escorted to the nursing break room and was picked up again when Zjuul had finished. He wasn't awake yet.
As soon as he was awake he had to start moving everything immediately. And that went well! Tested everything again in the recovery room. Mister just didn't like the Halo. “Get this *Beep * Halo off me! And I want to get up, I always walk, so I don't want to lie down, do I? " The nurses had to laugh out loud.
Zjuul also had to cry, logically. But…. He no longer had an extra headache! Now we are in the neurology department. Zjuul is very nauseous. He has just received an IV of anti-nausea medication. Hopefully that will do the job. Swallowing is different than normal, that is not comfortable now. But that makes sense. His neck is suddenly longer. The doctor has also been briefly. He thought Zjuul looked good and did well. He asked: "Zjuul are you in pain somewhere?" “No” “And a headache?” ”No” Hopefully it stays that way!
If everything goes well in terms of planning with the doctor, we will have a consultation on Monday. And then we will check how things are going. On the basis of this he will then be scheduled for surgery, it now seems that this will be done next week. So very exciting days now.
Does he indeed stay without a headache? Fingers crossed
Thursday, October 22, 2020
Yesterday was a long day. We finally drove home at 8.45 pm… Everything is very flexible here. So you think you have an appointment with the cardiologist at 4.30 pm. But no, he is still busy.
We will first do a corona test. I still had to test for corona, otherwise I will not be allowed to go to the operating room with Zjuul. With this test, the doctors hope that I will indeed get permission from the hospital management.
Zjuul does not speak a word in an other language and is still too young to do this alone. We think, but fortunately so do the doctors. Then it is really time to go to the cardiologist. The ECG was ready in no time. And now it's official the cardiologist said: He's alive!
The neurosurgeons hadn't finished their surgery yet, so we had to wait for that. Outside, just mess around with the wheelchair, look at the parrots in the palm trees and see where all the paths on the square end.
Zjuul did a great job, because we waited a really long time, but no word from his side. You will notice that he can no longer sit / stand still and continues to move. He seems like a normal child, but he actually goes beyond his limits. When he sits / standing still he collapses and he prevents that by continuing to move.
We could go inside. The doctors could come at any time. They first discussed the latest images together. Then we were briefed by Dr. Gilete. Zjuul's vessels are good! That's great. He also has the instability and the small brain that comes out from under the skull. And there are a number of options, but they all depend on what the Halo will do with Zjuul. How is his fatigue, concentration, well-being, activity, etc.?
We have been given a schedule for this that we have to keep up with from today. The Halo will be installed tomorrow. That happens under a daze. He shouldn't have to stay overnight, they want him in his familiar environment as soon as possible. On Tuesday we have to go back and the Halo will be removed. Then the doctors deliberate and decide what is best for Zjuul.
We do not yet know when we will get the results, nor when the operation will be.
To be continued ...
Tuesday, October 20, 2020
Today they have made all the necessary footage. Standing CT, MRI with images of all his veins in his neck & head and an X-ray of his lungs Then it would be ready. But Zjuul was sober from drinks and food long enough and there was time to do the blood test right away. So that is not necessary tomorrow morning. Zjuul didn't think that was funny!
Tomorrow afternoon a heart film will be made and we will have a conversation with Dr. Gilete (instead of Thursday).
Now first a well-deserved bath!
Monday, October 19, 2020
We arrived safely in Barcelona! Tomorrow the first examinations ...
Monday, October 19, 2020
Hello everyone, see you…?
Friday October 16
Suddenly the time has come. The last weekend at home is just around the corner.
Despite not having the necessary amount together yet, we go. We can't wait any longer with Zjuul. He is deteriorating too fast. And don't want him to end up with nerve damage because we had to postpone treatment because of money. The crowdfunding therefore continues to run to get the necessary amount together. We think it is great and very special that we already have such a large part together. Thank you so much!
The last time has been full of arranging things: crowdfunding, transferring all my clients to another groomer (thank you, dear colleagues), interviews with newspapers, exchanging the latest information with Barcelona, arranging / handing over a place to stay in Barcelona (Thank you, Danielle Dertien Personal Touch Travel), ensure that everything is arranged at home for the boys, Arno and the animals, etc.
On Monday Zjuul and I, the 2 of us, leave. We have a tough time there. But all for a good cause… Zjuul 2.0 without headaches and without fatigue, who can play with friends and toys again and have a more normal life again.
Will you continue to help us? And share our story? Do you have any ideas for promotions?
October 11, 2020: We've got the schedule, it's going to happen!
What is going to happen?
On October 20, additional images will be made at Zjuul in Barcelona. He will then receive a CT scan where he must remain standing. This CT scan is a very important one. Then they can see what gravity is doing to his head and neck. And so they can see how much his skull drops over his neck. Images are also made of his veins in his head to see if there are still strictures there.
Blood tests will be done on the 21st.
On the 22nd we have a conversation with, among others, Dr. Gilete. Here will be discussed what the results of the studies are and what the expected treatment plan will be.
Zjuul will be recorded on the 23rd. He then gets a Halo frame. He is supposed to wear it for 3-4 weeks. That time Zjuul and I will stay in Barcelona. Zjuul will get intoxicated with the placement. The doctors place his head in the desired position and then secure it with the frame. This way they can see what this is doing in terms of a headache and any other symptoms he has.
The definitive operation plan is made on the basis of this.
All very exciting, but we are happy that something is going to happen on the way to a definitive end of this headache dossier!
04-10-2020 Animal Day, a message from a Vosje
How is Zjuul now?
At the moment he is deteriorating quite fast. He hasn't been going to school for about 3 weeks. Zjuul can't go to school anymore because he is very tired. Dressing up is too much. He then gets overstimulation attacks. This means that he gets a high heart rate and breathing and feels very angry and irritated.
Tomorrow he will have “Class Contact” so that he can still keep in touch with his class and teachers. And will soon be able to continue attending school also in Barcelona.
The treatment does not come too soon ...
Furthermore, Zjuul is still cheerful, and regularly drives his brothers to despair, which is good.
We are very happy and grateful with the donations so far, great !!!!!
Would you like to keep sharing Zjuul's story, thank you!
Arno and Sascha Vos