New baby's are coming...but Esther is still not doing well.

Yesterday, baby Santos was brought to Amecet, he was just one day old. His mother has a mental sickness and the father is unknown. The mother rejected the baby and the relatives were scared that the mother would do something to the baby. So that is why they asked our help. In 2 months the grandmother will take over the care for the baby, by that time the mother would have forgotten that there was a baby... Santos weighed 2.4 kg and was only fed some sugar water, we had to put the baby on IV fluids because he was dehydrated. Today he was fine and started to drink well.

And on Friday baby Messach was brought, he is 2 weeks old. You see his picture below. His mother died suddenly after an infected tooth abscess. Very sad. 

But I am so amazed, the Amun week has finished. And we did have quite some empty beds. I was a bit happy that we did not have many children during Christmas and New year and also no new children during the Amun week. But now we got two new baby's and we expect tomorrow twin baby's. We got a phone call asking for help. I don't know the details, but the mother died and the baby's are 1 week old. They are welcome....

We do still have some children in Amecet who became sick during the Amun week. And they needed IV medication, so we kept them a bit longer and they will go home this week.

Baby Esther is still not doing well, We are battling the breathing problems. She was on oxygen, but then there was another very critical ill patients who was also in need of the oxygen machine, so they took it to that patient. After some time, we had to run again to the children ward to get some oxygen there. after some time, we talked with the doctor and asked if we could use the Amecet oxygen machine for Esther, so she could stay in the place where she had been the whole time and where they give good care. So that we did and it went well for 2 days, expect that the electricity is off and on, so when it is off, you can see her starting to struggle again. The moment they finally put on the generator (maybe they found fuel??) you are so happy... This morning I got a call from Sarah, that the machine was not working good. we never had problems with it in Amecet, but I know we were due for a service for the machine. I drove to the hospital and saw that it was not just a small problem. I went to look for the technical man in the hospital. He is very good and has helped us before with the machine. he came directly and tried to fix it right there in the hospital room. You can see it on the picture below. At the right you see baby Esther propped up in her little chair and Sarah with her. The man tried, but it was too much, he had to take the machine to his workplace. We took Esther again to the children ward, to get some oxygen there, because her levels were going down. After one hour the electricity went off.....the man could not work on our machine and Esther had no oxygen. we took her back to her original pace and just prayed that she would make it until the power would come back. And she did, so back to the children ward and there is she still at this time, the man told us that he could not make it today, but tomorrow the machine would be back...... 

You can imagine that this all is not easy, it is emotional draining. We go from day to day.... And tomorrow we go back to Kampala with baby Benjamin. He is not changed much, I am wondering what the doctor will say.. I wrote about him in the beginning of this month, he cries a lot, hours sometimes and nothing can stop him... At the moment he is sleeping, he is this night with us in our home, together with one of the staff, Lydia. we will leave early in the morning, so this way it is easier. But I hope Ben will sleep, he is in my room....

The Amun week finished today....

 We can look back on a good week, even some of the children were quite young, they really learned a lot!

Yesterday Andrew gave a lesson about growth and development of the body.

 The second lesson was given by Elias (and translator David) it was all about personal hygiene and also a bit about general cleanliness. It was practical and the children talked a lot and gave answers on the questions Elias asked. 

Simon made it very practical after wards by cutting many finger nails!

Today we had a lot of singing, and we looked back on the week. The children could give good comments about what they had heard. It was really encouraging to hear that they mentioned the most important things we had talked about..... Then they went into their age groups and together they made a presentation about one of the subjects we had taught.

 there were songs, a  poem and drama....

Most of them were straight forward, the group om the picture above played a drama about a boy who didn't want  to take his ARV's anymore. He got sick, they brought him to the hospital where the doctor put him on an IV drip, but it was too late, he died... They all know it, the medicines are life!!!!

And here is Catherine, still too young to participate.... She can't wait to grow into the Amun T-shirt, maybe next year?????

Another emotional day........

At 7 am, I got a phone call from Sarah, she is staying with baby Esther in the hospital during the nights. I am very impressed with Sarah's heart and commitment towards baby Esther. I feel so much better, to know that it is not a burden for Sarah, to sit all those nights with Esther in the Hospital. She told me that the baby needed oxygen and she had to go to the children ward. The last week we were in a kind of private ward, where more care is given to the baby than in the children ward, where too many patients are. Deborah and I went to the hospital and found Sarah with Esther in her arms. Esther was doing bad, the saturation (oxygen in the blood) was very low, in spite of being on the oxygen machine and the heart rate was very high. While we were there, suddenly Esther had to vomit a bit and the heart stopped!!!On the monitor there was only a line........It was so shocking, we all had tears in our eyes, but then after some seconds or where they minutes??? the heart started to beat again, we were shocked again, it was so weird. I can't describe what I felt... The doctor came and we could go back to the other ward, they had found the oxygen machine and I was happy, it is so much more peaceful there. So Sarah ran back, with us behind her, and the oxygen machine was waiting for Esther. Up till this time she is still with us, a bit more stable, we have still hope, but we also know that it can still go either way.....

This all made that I was not so much at the Amun week. I came there in the afternoon, when the groups presented their reactions on the morning teaching. Jane had been talking about Family life, which is not always easy, most children lost their parents due to HIV/AIDS and are cared for by relatives. They went into their groups to talk about the challenges they have in everyday life at home and also about the solutions. It was impressive, even the youngest group, with children of 8-10 years old. they were really wise.  I was touched, they shared about the lack of money for school requirements, some of them work at the local market, to save some money to be able to buy pens, pencils and note books. Others shared about the lack of food at home, or that they have to work so much. But there was no negative attitude. The children encouraged each other to appreciate their relatives.

Singing is done several times during the day, it is quite warm and good to stand up and do some actions. David is an excellent leader and they love to sing and dance. On the left picture, our youngest boy, Charles, he is so cute!!

This are all the T-shirts from the previous Amun weeks. 

We started in 2011 with a red shirt: Let children shine again, this was our 10th anniversary.

2012: a green shirt: "plan to give you Hope and a Future

2013: a purple shirt: "I am chosen"

2014: a blue shirt: "Be strong, take the Lead"

2015: an orange shirt: "life to it's fullness"

2016: a red shirt: "I will be you"

Most of the T-shirts are still in use....

There are several children sick, and on treatment. My daughter Helen is also sick, I took her home to sleep. She had asthma and needed IV medication. I borrowed the nebuliser form Amecet and at least she could go to bed with some more air...I hope she (and we..) will sleep well!

Another good day in the Amun week...

 Another good day in the Amun week! The weather is hot and there is quite a lot of (warm) wind. But the children are doing well and they are learning and responding on the teaching. Because the average age is this year a bit lower than the last years, our teachings are also shorter and more practical...

 These are 3 of the youngest children. They are doing their own thing at times, one had found some balloons.... But they do pick up from the teachings and in their small groups in the afternoon, they come up with interesting statements. We have gone (so far) with 7 children to the clinic next door, several of them have malaria or other infections, which needed treatment.

 Dominique gave a teaching about the subject: You are special. A message we can't give enough to the children. She used games and other creative ways to let them know that they are special. Naume is the translator.

The second lessons was about relationship. What are the basic pillars in every relationship (Love, trust, respect, communication) When I saw this picture I had to smile, Margaret was translating from English into Atesso, while at the right you can see Andrew sitting, with some children around him, he was translating into Kumam. We noticed that several children missed too much, because they speak another language, Kumam.I wonder what they are saying here, Margaret and Julius are pointing into different directions... This lessons was with many questions for the children, they were very active in answering.

P.S. I want to ask your prayers for baby Esther. I was called this afternoon, by Deborah, who is with her in the hospital, I went to see them, It was not so good with the baby, the NG tube was back in and no foods were given anymore, the baby has some seizures. I took a blood sample to a laboratory, tomorrow we will get the result.

The Amun week in full swing...

We started with singing and a short meditation outside in the tent, after that we moved inside the house. we all fitted and we got a teaching about HIV/AIDS. Many people have told the children that if you have HIV/AIDS, you will die soon! We talked about that and I could prove that this is not true......

 Emmanuel lived in Amecet in 2003, he was very malnourished and sick. But he picked up, lives with his grandparents and does very well in school!


Josh also lived in Amecet in 2003. He had a terrible wound on his face, which took some time to heal. He is now a real teenager and very friendly.

Sarah was in Amecet in 2003, she was very underweight and it took some battling to get her eating. She was resettled back to her parents, who were also both HIV+, but when her mother passed away, she came again back in Amecet, very, very sick, but again after some struggles to get her back to eat and taking her medicines, she went to live back home, with her father, who died last year, but Sarah is doing wel now, is taking her medicines and is happy.

Michel was for a long time in Amecet, we even had to feed him with a NG tube. But look what a guy be has become now! Very nice boy and easy to get along with!








Naume was a very sad, sick girl when she came into Amecet! Today, she is working as a pre-school teacher and helps us with the Amun week as a staff member!

 The second teaching was about acceptance. If we accept our status, we can handle many things, we are more sure of our self and we can develop a positive lifestyle

In the afternoon we went into 4 groups, with the same ages. To talk more about the morning teachings. And after that we had some water games...which was a lot of fun. I don't have pictures from that, because I went to the hospital to visit baby Esther who was allowed to drink for the first time after her operation on Thursday. She is doing fair, lost a lot of weight, but we hope she is coming back to Amecet soon....

Amunweek: 45 children and 7 puppies

 YES!!! The Amunweek 2016 has started!! All day long yesterday, children arrived, from the villages around. The first one came at 7.30 in the morning and that went on until 6 pm in the evening. The older children, excited, to be here and to see old friends again, the young ones, a bit scared, for most of them it was several years ago that they were living here, so they forgot.. This morning we had a kind of service in the tent, which we hired for this week. We sang and praised God and we listened to Steven, who spoke about the theme:" I will be with you" from Isaiah 43:2. It is such an encouraging to know that God is with us, where ever we are and whatever is happening in our life. 

Of course are the meals very important in our Amunweek. This is the lunch on the veranda at Amecet home. Everybody enjoyed the meal and they ate well. 

 Because the real programme starts tomorrow, the children had more free time, they played with the Lego and dolls and cars,

 There were three games of Uno going on, so you can imagine how much noise there was in Amecet. At 4 pm. they all left back to Amun home and there were games organized outside in the garden.

In all this busyness, one of our dogs gave birth to 7 puppies!!! So there had to be a separate place organized for the mother and the little ones! I hope they will all survive.....

But you have an idea what is going on, I will write some more about the Amun week and the children... It is so encouraging to see them all back, this were children who were so very sick, some of them you were even scared they would not make it! And here they are, all healthy and happy. God has done great things......

The Amun week is almost starting......

 Yes you read it well, it reads Amun week 2016...and it is 2017...... We have the Amun week every year in the December, but because of the moving back to Amecet, after the renovation, we could not make it in 2016. It is still school holidays, so the Amun week 2016 will be hold in January 2017!!
We have been meeting together with some of the YWAM Soroti staff en today we had our last meeting.... I can't say that we are ready for it yet... but almost!!

In the office is the pile with Amun T shirts waiting. Our theme for the week is from Isaiah 43:2, where God says that He is with us. we will get a group of 45 children coming, the children have all been in Amecet in the past and they are all HIV+. This year we invited a new group to be part of this event. During the last years we have been graduated several of our older youth and when we looked through our list of children, we saw that there is a whole new group getting ready for this  Amun week. Children who are now old enough to receive and understand the teaching, children who were in Amecet as babies or toddlers, but are now 8 or 9 years old and they also need to get more understanding about their status. So it will be an interested week, I think....

I am looking forward seeing them back and we are all in for a great week!!!

All the children will be sleeping in Amun home, a tent will be put up in the garden, for the meetings. One thing where I am also happy with is that we have now three of our older youth, who graduated from the Amun week, are in the Amun staff to help disciple the younger children, They want to be a example to them and to encourage them in many ways. It is not easy to be HIV+ and many of them are orphans, but He is with them!!

PS. the operation of baby Esther was successful, we need to see her gain her strength back....

Baby Esther will be operated ........

This morning, Deborah and me took baby Esther to the surgeon. When we got the results of the abdominal scan, we went back to the pediatrician. She advised us to take the baby to the surgeon. He looked at her and told us to come today at 4pm to the hospital, where she would be admitted and he will operate her tomorrow morning.......

So we went back to Amecet and this afternoon we drove to the hospital. I called her family, but they were not ready to sit with her, her mother is also sick again and the father we have never seen... But I asked our staff Sarah, Sarah  loves baby Esther, and she was very willing to stay with Esther in the hospital. I took this picture from Sarah and baby Esther in the car, when we drove to the hospital, I know that Esther in the best loving hands is this night....

We saw the doctor and we got a bed. They are going to empty her stomach and put her on IV drip. so she will be ready tomorrow for the operation. Please pray for this little girl....

A trip to Kampala....

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. 

 The technician was very friendly and explained a lot to Deborah and me, while Sarah, Helen, and Cathy looked after the daughter of Deborah.

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..

Yesterday, today, tomorrow and every day.....

Yesterday: Deborah (our nurse) and I took George to get a biopsy. George gets his ARV's via an other organization than most of our children. We have been calling them and we could come yesterday to have that biopsy done. They took it in the hospital, in the same building as where the theatre is. This biopsy will be sent to Kampala. they want to confirm their diagnosis, a certain cancer, which is more common with HIV+ patients. It was so sad to se him crying and fighting the injections, knowing that there is a long way ahead of him, with many, many more injections....

Today: I took baby Esther for a scan of her abdomen. I wrote about her before, a small cute little girl of 4 months and weighing just over 3 kg!! She still not doing well, vomiting a lot and hardly growing. The doctor who did the scan, saw an obstruction near the place where the stomach goes over in the intestines. We have to go back to the pediatrician, who will send us probably to the surgeon... But as he was talking to us, Esther gave the doctor such a beautiful smile, the biggest I have ever seen of her, I was almost jaleous of him....

Tomorrow: We will leave very early (before 5 am!!!) for Kampala. we have to go to a pediatric neurologist with Benjamin, the baby I wrote about in my last blog. They can also do a EEG there. So Deborah (the nurse) is sleeping in our home, Ben is also sleeping here and tomorrow morning we hope to leave before 5 am.

Everey day: We have real problems with Anna Grace and John Peter, they are refusing to eat. and we are in a real battle with them. They are 13 and 14 years old, HIV+, on the ARV medicines and very, very malnourished. They get angry at us, they go and vomit etc. etc. this goes on every day. they cry, they lie, they throw their food, it is not easy for the staff. They are really in need of help, but they refuse the help we are giving. We ask your prayers for yesterday, today, tomorrow and every day.....

A CT-scan for Benjamin





In the last blog, I wrote about some of our children we are worried about. I wrote about Benjamin, a 3,5 month old baby who has convulsions. We were advised by the pediatrician, to take him for CT scan of the brain. So today we drove to Mbale (1,5 hour drive), because in Soroti is no place where you can do a scan like that. Benjamin is a super baby to travel with; he mostly slept....... didn't cry at all, we had even trouble to wake him for feedings. Good for travelling, but it is not normal for a baby........ 

Deborah, our nurse, came along, here she is waiting for instructions in the room where the scan will be taken.

They lay the little Benjamin in the machine, they already had given him a cannula and later they injected the contrast fluid. Benjamin didn't wake up during the whole process... Even when he went in the machine, he was just sleeping and didn't move.. a model patient!!
we got the results, there was nothing found in the scan what was abnormal, they advised us to find a pediatric neurologist, and they are only in Kampala... so that will be our next move...
Poor little Benjamin....