Thursday, 19 June 2014

Second birthday

Today marks the 6th anniversary of Sunny's major surgery. For privacy reasons I am not going to disclose what kind of surgery it was. All I can say is that it lasted six hours, that Sunny lost a lot of blood, that two surgeons were needed, that it affected a very sensitive area of his body, that he spent four days in the ICU afterwards and another three days in the regular hospital ward, that I had never heard of a surgery like that before (but later met other kids that had the same surgery and that it is not as rare as I thought - but still something most people never heard of before), and that it scared the hell out of me.

I will never forget how I carried him all the way through the hospital in my arms until we reached the patient air lock. I tried to be strong so that Sunny would not be scared but I failed miserably and cried. He started to get upset, too. Then the anaesthesiologist approached us and gave Sunny his sedative. Within two seconds he got completely limp and heavy in my arms. I was not prepared for it happening that quickly and I was almost convinced that he had died that very second. It sounds completely ridiculous writing it now but at that time I did not think, I just felt his body become heavy and limp and switched into panic mode. The anaesthesiologist said "we need your child now" but I could not give him away. He repeated "we need your child now" over and over again several times until he finally took him out of my arms and softly placed him on his bed. I will never forget the sight of his legs dangling lifeless in the air when he took him out of my arms. A second person lifted them up while they lay him down. Then the air lock closed and I fell into my husband's arms and cried hot tears.

The minutes turned into hours until we were finally told that the surgery was over and that he was brought to the ICU. We had to wait another hour until everything was in place there and we could finally visit him. I will never forget the moment when I saw him again after his surgery. I was so glad he was alive!!! He looked so beautiful and peaceful because he was still asleep. 

I will never forget this date and although the surgery was not life-threatening it was a very difficult, scary one. I will be forever grateful that everything went well and I celebrate this date every year. This year is no exception. Here's to Sunny's successful surgery! 



Wednesday, 18 June 2014

A magic night to remember

We attended a special event recently: the so-called Dreamnight at the zoo. It is an annual event, taking place preferably on the first Friday of June in zoos around the world. This special event was invented for children with chronic illnesses or disabilities and their families. It was founded in the Netherlands in 1996. The employees of the zoos dedicate their time without any reimbursement to make magic happen for all the kids that get to visit the zoo.

It was the first time that we were able to get an invitation since they are very often handed out to self-help groups (which we are not part of due to our lack of diagnosis) or a few special hospitals (none of which are ones we are treated at) so it is almost impossible to get an invitation if you are not part of one of these institutions. Luckily for us, a friend of mine was there to make a performance and she was handed over three invitations to pass to someone else. She knew that I had been trying to go there so she gave us one of them.

On the day of the event the regular visitors of the zoo are requested to leave earlier. Before we got admittance to the zoo there was a performance with drums and dancers in front of the entrance which all of the kids and parents really enjoyed. Then the gates were opened and we could go inside. There was so much to do and see that we almost had to hurry to get to do all the things we wanted to do.

First of all we started with feeding the monkeys. We were given pine cones which we stuffed with popcorn and various other foods. We sprinkled honey over it to make the food stick and then we threw it into the compound. The monkeys loved the pine cones.

On our way to the monkeys we were able to pet chickens and chicks. Sunny was very anxious and did not really want to do it but he was fascinated at how the chicks were held by the zoo personnel and talked about it a lot in his own special way.

We went on to do some pony riding. Since the ponies are at the other end of the zoo and everyone started to visit the animals and attractions near the entrance we were almost alone. Sunny, being the hippo therapy champion that he is, excelled at riding the pony and got a lot of compliments for his good sitting posture. He could do several rounds because no one else was there and he was very happy about that.

Right next to the ponies were the goat. There was a time when Sunny was eager to pet the goat, he even went so far as to cuddle with them and lay his head on their backs or holding their cuddly tails. This time he was reluctant so we did not force him to get close to them.

We went to see the cows with their calves and the big pigs.

A highlight certainly was feeding the giraffes. We were given large tree branches with lots of leaves on them and got to stick them through the fences where the giraffes eat greedily. Sunny enjoyed this so much, he squeaked with delight and could not get enough. I mean, when do you have the chance of getting so close to those majestic, beautiful animals? When they stuck their mouths and noses through the fence you could even pet them if you were brave and quick enough. It surely was something really special.

(Credits)
On our way to the lower part of the zoo we watched the feeding of the vultures and also could peek inside the ice bear cave.

After all those exciting things we took a break and had dinner and beverages. Everything was free of charge and a band played while we sat outside and enjoyed our food. Sunny, always acting like a camel when it comes to drinking, downed all of our cups so we had to go and get more beverages for ourselves - and for him, of course.

After feeling rested and full we went on to see the feeding of the sea lions. This is something we rarely miss when we visit the zoo. Sunny loves the sea lions and is actually quite good at imitating their sounds. We love how he does that and ask him to do it very often. It is just so lovely!

We moved on to get a chance to pet a penguin! That was just cool. It felt very soft and fluffy (like a bird) and his wings were rather rough. Sunny even dared to come close and pet it, too.

Then we went into the aquarium. Sunny loves to watch the fish in their tanks and ran from one tank to the other. The bigger the fish are, the better. He found a huge tank with huge fish where he placed himself in front of and just enjoyed watching them.

After some time there we moved on, Sunny and my husband paying a visit to the crocodiles while I stood in line to pet a snake. Touching a snake is something that I always wanted to do so I grabbed the chance. It was a rather small colubrid (no huge constrictor snake, lol) and I was impressed at how muscular it felt and how it wrapped itself around my wrist. Its skin felt smooth and sleek. It was awesome and I am glad I took the time to wait for this experience.

On our way out of the aquarium we got the chance to pet a large koi carp which was very fascinating for Sunny. He pet it several times and could have done that for the rest of the night, I think.

The Dreamnight was slowly coming to a close and when it started to dawn we all went outside and watched a fire show. Sunny was mesmerised!

On our way out each child was given a small present.

In the forefront of the event I was wondering how Sunny would handle being up way past his usual bedtime but in the car on the drive home he was the one being the fittest of us three. He sat in his seat and was still fully awake and excited while my husband was snoring away next to me.

It was a very special event that we will surely not forget. It felt good to be surrounded by others who share our experiences and challenges. There we no stares, no awkward feelings. We were part of the group and not the outsiders. That felt really good. I also love how the staff at the zoo bent over backwards to give our kids such a special night that I am sure everyone enjoyed as much as we did.





Thursday, 12 June 2014

Teething problems: I thought we were done!

I should have known better than to announce in my last post that Sunny is fine - because this has changed for the worse in just a few days.

Since Sunday last week he has not been feeling too well. We had a heat wave here with temperatures up to almost 40 °C and I thought he was just feeling miserable because of the weather. On Monday it got worse. He was whiny, dispirited, grumpy, tired, and clingy the whole day. Monday was the hottest day here. He asked for his favourite drink (milk with water) frequently throughout the day but only drank one or two sips every time I gave him his bottle which is very unusual; he normally drinks large amounts of his milk drink. On Monday night when I wanted to brush his teeth he started crying and put his finger in his mouth. I looked inside with an electric torch and saw that his upper molars are coming through, both almost at the same time. The one on the left side already broke through a bit; the one on the right can already be seen shining through his gums.

Since then he has been refusing almost any food and, what is worse, also reduced drinking a lot. Which is not good at all in the middle of a heat wave. It got worse every day and yesterday it was so bad that I took him to see our paediatrician. He has so much trouble swallowing that I was sure he has strep. But he does not have any kind of infection. She checked his ears, lungs, stomach, throat - everything is fine. She even did a blood count to see if his infection markers were increased, but they were not even a bit elevated. However, yesterday he already showed signs of dehydration so I have to be careful and bribe him into drinking as much as I can.

However, he just is not his usual funny and happy self and that breaks my heart. I see how miserable he is all the time. It is a constant state he is in at the moment and I am so sorry for that. I wish I could help him bear the pain. So today I decided to have a dentist check his teeth to see if there was anything else apart from teething going on but she told me that from a dentist's point of view everything seems to be normal and that she cannot help us.

The only thing I can do is ease the pain with medication and hope that it will be over soon. Given that it already lasts for almost a week and the teeth still have a lot of work to do until they are finally all out does not make me really hopeful that it will be over soon. It is hard to see your child cry when he wants to eat or drink but is not able to because of the pain. That makes my maternal heart break over and over again. The nights are also horrible, he wakes up almost every hour and I am so very tired already.

I have never experienced anything like that in his history of teething and I never thought his last molars would bring that much pain to him. He always had painful times when his teeth came but it was never that bad. Well, you live and learn.


Tuesday, 3 June 2014

Coming home

It is difficult to pick up this blog where it was left after such a long absence. 

The truth is, I also did not really know what to write. I feel like being stuck in a tornado since last winter and do not know how to get out. But nobody wants to read my constant whining about that. So I was unsure whether I should even return or just give up blogging altogether. 

I was completely away from the screen which also means that I stopped reading blogs in the last months. It was all just too overwhelming for me and I needed to step back and try to balance my life (which I am still struggling with). I did not even check my e-mail account (the one that is connected to the blog). It was simply not possible for me. Sometimes I wonder whether I am (or was) on the verge of a burnout or/and depression but I know that these are severe diagnoses and I am very cautious using those terms.

However, I do want to connect again with my fellow bloggers and friends but I also need to concentrate on the most important ones for me. Otherwise it will quickly become too overwhelming again. 

Apart from my new job which is very fulfilling but also very exhausting, and caring for Sunny there are other issues in my private life that need my attention and draw a lot of energy out of me. I rarely get time to relax lately, with evenings filled with things that need to be done and that I did not manage to do during the day. The Pentecost holidays (2 weeks) are just around the corner, allowing for even less time than usually. I finally found two lovely and caring daytime nannies for Sunny but that means that I will have to take him there and pick him up again each day during the holidays when normally he rides the bus to school. 

But I need to stop here and now because I start whining again. Everbody’s life is busy, I know that. So I will just leave it at that and move on.


Here is what you probably want to know: Sunny is fine. 

Apart from the fact that we spent the weekend before last in the hospital due to another concussion he got while he bumped into another kid during recess and fell backwards, hitting the concrete hard with the back of his head. The teacher called me and told me about the accident while I was still at work. But he seemed to be doing okay apart from being more snuggly than usual and she told me she would monitor him closely and get back as soon as this would change. An hour later she called me again, telling me that he needs to be checked by a doctor because he was not being himself and that he was so tired. When I heard that I was already 80 % sure he had a concussion so I left work early and drove to his school to pick him up. On my way there she called me again and told me she just called an ambulance. She sounded nervous and worried and hung up the phone without any good-bye. That was when I got worried, too, and I drove as quickly as I could. When I arrived at the school it was time for all kids to go home so the whole schoolyard was full of buses – and the ambulance. On my arrival I was immediately guided into the schoolyard and as I got out of my car I already heard Sunny screaming inside the ambulance. I rushed to find him there with his sweet teacher who tried to console him. He was very scared and in bad shape. He did not feel well, I could tell that immediately. The teacher informed me that after our second phone call Sunny’s left arm suddenly went limp (fortunately it only lasted for a few minutes!) and she was afraid that he might have had another seizure so she called the ambulance. 

The paramedic told me that Sunny needs to be checked in the hospital and that the hospital staff already waited for us. My husband was away for work and so Sunny’s kind teacher offered to drive my car to the hospital (which is half an hour away) so that we would have clothes and everything with us for our hospital stay. She said she would somehow manage to get home again. It was the sweetest thing she could have done for us and yesterday I brought her a beautiful flower bouquet to thank her. The car was packed because we had planned on visiting my parents for the weekend. So we had everything we needed with us.

On our ride to the hospital Sunny fell asleep on my lap, then he startled and cried because he probably had a headache, then fell asleep again. When he heavily threw up on me it was clear that he had a concussion. 

The hospital staff knows us already and we were greeted by the nurses like old friends. The paediatric clinic had just moved to a new building so we got a brand new room with a gorgeous view which was the one thing that made it a bit bearable.


Luckily, no second seizure was diagnosed which was a huge relief for me. I am still always very worried about that. Our latest EEG in April remained unchanged and since Rolandic epilepsy usually does not go away before puberty I do not expect it to change in a positive way before Sunny gets older. The good news, however, is that it also did not get worse and if the next EEG will be the same our neurologist told us that one control EEG per year would be sufficient. And this is great news!


Another thing we accomplished in the week before we went to the hospital was that I finally managed to wean Sunny off his pacifier. I know, he is much too old to use a pacifier, but it was always so difficult to try and he only used it for falling asleep. I always went into his room when he was sound asleep and took it out of his mouth. Anyway, one day I just decided that it was finally time to get rid of it completely and so I just did not give it to him. When he started crying and demanded it I told him that his friend J from school was such a big boy and that he surely did not us a pacifier anymore. He seemed to understand because he stopped crying immediately and accepted that. It was such an easy transition, I never would have imagined that and I was so glad that it went that smoothly!