Thursday 31 July

Today Marieke, Tamar and Benjamin came to visit. Our friends from Dubai. Melissa found it very exciting to see her friend again and the two of them continued where they left off. It was our first meeting with Benjamin. A baby who smiles a lot. We went to the playground with the children and ate paste afterwards. It was very nice to see each other again and to catch up.

Thursday 24 July

Today we left again early in the morning for our checkup with Dr. Reding. During the drive Quint was looking at some photos and called enthusiastic..Mama, mama, mama while pointing at the picture. The checkup went smoothly and everything was good. Quint has not gained much weight, but looks he looks very well. He eats very well, although it is a lot of work because al his milk is given by spoon, and then you have the pureed fruit and veggies.

Luckily Quint is still without the tube feeding thanks to my parents who pushed me to leave the tube out on July 2nd, otherwise he would still have this and for all involved that is even more demanding. Today Quint drank for the first time from a juice pack. Again a little improvement. It is so great to see this, when you realize that Quint never wanted to drink or eat anything. Before his transplant he never wanted any of this. The tube was his savior then.

Wednesday July 16 we had a farewell party at Melissa's school to close the school year. The children were allowed to drink lemonade and eat some candy and the teacher was presented with some presents in name of the students. In the afternoon Oscar had to leave again for Dubai. Friday 18 July was the last school day for Melissa. She will miss this school because in September she will go to a new school in Dubai. Today Quint received a present from the neighbors Linda and Robin. A grass trimmer. Quint loves it and constantly walks around wit hit. It will be a good tool to assist him in learning to walk. 

                                                        

Tuesday 15 July

Today Kathelijne, Mathieu, Chivan and Justin will visit us. Chivan also had the same illness as Quint and was transplanted in October 2007. His father Mathieu donated a part of his liver. Both recovered well. The transplantation took place in Groningen, Chivan and Mathieu were the third living related transplant. In Brussels they have performed many of these and I asked them if they were not afraid to be ‘the third’. But they told me that they we coached very well and they had the fullest thrust.
 
Unfortunately Chivan fell ill 2 months after transplant. He was admitted in the hospital and when he was recovering the got a bacteria in the hospital and a virus on the lungs and he spent 7 weeks in the intensive care in Groningen, Rotterdam and Amsterdam and his condition was very critical.
 
As luck would have it 5 weeks both children were in the intensive care at the same time. He in Holland and we in Brussels. We had contact via sms and both had a very intense time. We shared our experience by sms. The messages were short but gave us hope.
 
It was very nice to see each other after such an intense period. It was a very cosy afternoon and was good to see how our heroes were doing. Dad Mathieu was completely recovered and Chivan looked very well.
The same afternoon Quint climbed the stairs under a close eye of Oscar.
 
Wednesday 16 July Oscar left again for Dubai. And Thursday 17 July Quint drank for the first time from a straw. Quint never drank before and only takes food or liquids by spoon.
 
 

Thursday 10 July

Last Tuesday Oscar arrived for 7 days and this morning we went together with Quint to Brussels for a Check-up. When we arrived there were a couple of other children with the same fate from Holland already waiting under which Tiba, Wendy Jantje and Stephen so it was a busy and cosy morning. Today we Dr. Kathy Moignee was in care of our consultation and everything went smooth. After this we went to see Dr. Hermans for the feeding.

On the internet I already checked different types of milk. And the suggested milk from Mead Johnson could possibly be the solution for Quint’s intestine problems and his diahrea. I handed these copies to the doctor and she sent me to the dietician. After waiting for an hour dietician Dassy came to fetch us. She took her time to discuss Quint’s feeding. The formula seemed to be a good choice and we should change immediately. And for the rest we should avoid as much as possible which contains milk, egg white and soya. Quint has a disturbance of the intestines. And it will take time to cure this. Hopefully with the right feeding it will become less.but it will be a slow process and will take time.

Friday we bought the new formula and on Saturday we started with this. The milk stank and had a very bad and bitter taste. A little fruit concentrate did not improve this and Quint was not really happy with this either. I already got scared because if Quint did not take this milk orally, the nose tube for the tube feeding may have to be inserted again and I did not want that. I also found it very sad. He has to take 1 bad tasting medicine (bicarbonate) and the feeding supplements are also bad tasting and now the milk.. luckily he takes it but you want to give him delicious food like fruit yoghurt or so but he is not allowed this so it is difficult. He eats his fruit and veggies very well and does his best.

Today we are taking Melissa to the dolphinarium but felt bad to leave my mother alone with Quint and the bad tasting milk. She noticed my concerned but found it nonsense to stay at home. I should not worry and enjoy the time at the dolfinarium. I did call a couple of time to see how things went. With the fruit concentrate and a drop of sweetener and some games my mom succeeded in giving the milk. Despite my bad mood in the morning we did have a nice day at the dolphinarium. Melissa found the dolphin show fantastic. To end a nice day we went to eat pancakes for which we had to wait more than one hour but they did taste very well. In the end Melissa had a very nice day with Dad & mom. And Quint enjoyed himself with grandma & grandpa.

Friday 4 July

I did speak to Magda to inform her that we stopped with the Tube feeding and that Quint sleeps much better during the night and does not have diarrhea diapers. I also wanted to know if it was possible that with the constant feeding, the intestines did not have a chance to rest and if that maybe the cause of all the diarrhea.
 
She suggested that that may be a possibility but she was not sure. She did not see any problems to continue without the tube feeding but make sure that we monitor his weight.
 
I also told her that we still did not receive the feeding supplements according to Magda they might not have been available but.Saturday morning we received a package with the supplements. We started with them but they are not very tasteful. Luckily Quint takes it with a little fruit concentrate without any problems on a spoon.

Wednesday 2 July

I had an evening out with 7 women. We went out to make tapas at the ‘kookschuur’ in Naalddijk. A relax evening out. When the evening was almost at its end, my mom called if I could come back home. I heard Quint crying in the background. Quint was rubbing his eyes and with that took out his feeding tube while sleeping. That was a pity, because I was enjoying talking and the tapas and I did not want the evening to end. But I had to cut it short and went home immediately. When I arrived home Quint had calmed down again. It was 2300 and Quint was very tired. My mother suggested giving Quint a plate of milk with Nutrix and for one evening skipping the night feeding. Day and Night Quint is being fed, so his intestines never get rest.maybe it is good to give him a night rest and look to see how it goes. Quint slept like a baby, as did I. He also did not have diarrhea during the night, something he normally does have. The next day we also decided to leave out the feeding tube. During the day Quint eats well, the only thing he does not do is drinking. So everything we give is with a spoon. Milk, fruit and veggieshe eats it all