Yesterday morning we left at 5 am in the morning to Kampala. because we had to leave so early, we took Benjamin the day before home, to sleep in our home, so we could leave really at 5 am. Our nurse Deborah also came and she slept together with her daughter also in our home on the night of Tuesday/Wednesday . My daughter Sarah was (over)due for her checkup at the Heart institute, so we combined it all. And since it is still school holidays, Helen and Cathy joined us as well. We picked up Elias in Soroti town and he drove the rest of the journey.
We arrived at 12 noon in the special clinic where we would see a Pediatric Neurologist for Benjamin. It was a special clinic and they took us first (after waiting for 3 hours) for the EEG.
You can see Benjamin laying with all the sensors glued on his head. He was so amazing, he just slept.... did not wake up. We had to get some medicines, in case he would wake up and be restless, but we didn't use it.
While we were watching, Benjamin had several seizures and it was good to see on the monitor. After this, which took another hour, we had to wait to see the doctor, to hear from him the diagnosis. This took again almost 2 hours, but then we could talk to the doctor, who went to see the EEG results. It is a certain way of Epilepsy, but it is curable!!!!We were early, he said, so with simple medicines can Benjamin be cured!! This was very good news, the doctor said that if you do not treat this it can give serious problem in the development of the child. we have to come back in three weeks and we got the medicines to start with. This will be a lot of work and commitment from our side, it also cost a lot of money, we are used to the Soroti prices, but this were Kampala prices and the "specialist" prices. i was a bit shocked ... But we give with all this, Benjamin a chance for Life!!
By the time we were finished in the clinic, it was 6.15 pm. and we had not eaten since snacks in the car. we were all very hungry, thirsty and tired.... I was very impressed by the children, who did not complain, but they were not as happy as normal. So we all jumped in the van and Elias drove us to a place to eat. But now it was too much for Benjamin, he started to cry and cry and cry. Screaming and he was the only one who had been fed regularly. We couldn''t go with him into a restaurant... but we really needed to eat, so we found a kind of fast food restaurant where we could sit outside... We ate and Ben screamed.. people asked us where the mother was, why we didn't feed him. Later I thought that people might have thought that we stole the baby....After eating, we drove to the simple guesthouse where I had booked 3 rooms. And Ben still screamed, whatever we tried, we could not get him quiet. Sarah would share the room with Deborah and her daughter and Helen, Cathy and I were looking after Benjamin. we joked that the boys should share together, but Ben came with us. I gave him a bath, we even had warm water (which is not always happening) and now he became a bit calm, feeding him another bottle and he slept... I was soooo happy, because I was very tired too. He woke up twice and cried again, but I was able to get him to sleep both times.
The next morning (today) we had some breakfast and drove to Mulago hospital, where Sarah had go go for her 6 monthly checkup. when we arrived there, the whole building was under renovation and people gave directions where to go now. Mulago Hospital is build on a hill and very big, every where are building, there are not many storey buildings, we found it, after some time, and there I saw many people, lining up and every where patients sitting, all outside. We found a place where the others could sit, while I tried to get an understanding of the system. I was so lucky that the ladies who work there, know Sarah and me, as we are coming there now for almost 12 years. They also had understanding that we had to go back today to Soroti, so we were seen by a doctor after 2 hours, and everything was fine, we could buy the medicines and we found Elias and we were ready for the journey back. Again 7 hours in the car!!!
Benjamin was sleeping, most of the time and was very content in his little car seat. Sometimes he can just start to scream and cry, out of nothing, we think he has pain, but when you just carry him or feed him, he goes back to sleep.
I want to ask you a favour, if possible, are there some among you, the people who read this blog, who would be willing to help us in the medical costs of the children, we have at the moment. We would be so thankful. Next time the doctor wants a MRI to be made from Benjamin, the consults and also the transport costs are high. Than we have several other children who are in need of medical help.
Please consider if you are able to help us. Our bank info is on the blog, there is a special arrangements for Dutch readers, via YWAM Holland.
We all came back in Soroti happy and tired, Benjamin is back in Amecet, sleeping... I hope..