Ken and his "pipe"

I spent Wednesday deep into kariobangi, a slum on Nairobi's east side. Over 50 % of the people in nairobi live in "unofficial housing" meaning slums. I will write about it over the weekend, I'm still kind of processing it- when I got back to Nyumbani all the Cottage D kids came running to tell me that while I was gone "ken got a pipe in his nose to help him eat!!" They were all quite excited and worried, I had to explain how a nasogastric (Ng) tube works. Ken is still struggling with eating, and if you don't eat the ARVS don't work. So, here's a picture of ken and his pipe.
Stay safe officer timmy, xoxoxo little boy

Replaced the picture of Ken and I

For some reason this one was deleted off the blog.

The "Long Rains"

They tell me that they are here. Last night and this morning it just poured rain. My first rainy day here. I know, big deal, after the winter you've all had!Still, it brings added hardship here, as much as they depend on the rain. The mud is everywhere, the dampness seeps into the kids bones. They are all wearing winter coats and hats! The rest of the country can get rain but stays warm, here in Nairobi we're at 5900 feet so it gets cold. Cold being in the 60's, 50's. The kenyans have assured us it won't be like this everyday, I can already see some blue sky.
Pascal, our computer expert, has warned us that it will interfere with the internet signal. That will make us all crazy! Keep the emails coming though, you have no idea what it means to open my inbox and see all your names.
Ken continues to struggle wtih fevers and vomiting. He can't keep his ARVS down, he can't gain weight. What he needs is a central line and TPN, but that just doesn't happen here. Everyone is quite discouraged. Last night I went out to dinner with Protus, the director of Nyumbani, and Sr. Julie the volunteer coordinater. We went to the British restaurant, The Rusty Nail, down the road.I had chicken kiev and mashed potatoes. Like heaven on earth. Protus told me how Ken grew up in Kiberra, the largest slum in the world. When his parents and grandparents and brother died he was taken in by his Aunt. She couldn't care for or feed him properly, which is how he got so malnourished. That and being HIV+ and not on ARVS. When he was near death she brought him to the Lea Toto clinic, where they immediately transferred him to Kenyatta Hospital. His Aunt would visit him there but would berate him for not eating, and verbally abuse him, telling him he should just die. She finally disappeared, abandoning him there. He was then emergently admitted to Nyumbani. Protus told me that Ken's whole life had been spent in Kiberra, then those days at Kenyatta, then to Nyumbani. That day I took him to Karin was the first day he had seen anything else. No wonder he was so fascinated. We decided if he rallies again we're going to put him back in the car and just drive him around and show him stuff. He had never been in a car until that day they took him to Kenyatta, and he was so sick he barely noticed. One of the things he does here when he feels okay is he sits outside the cottage in the sun. It's what keeps him warm, and we found out that is how he spent his days in Kiberra, sitting outside the hovel where he lived. I think sitting here brings him comfort, it's familiar for him. And there are so many Kens.
stay safe officer timmy and xoxoxo little boy

Enjoying some R&R

ken out in the world

Field trips

It's been a busy 5 days, with lots to do and see. My classes have gone well, we're now halfway through. The kids are learning a lot, and seem to be enjoying them. They are very attentive, minimal giggling, asking lots of questions. It has really shown me that kids really do just want accurate information, doesn't matter where they live. They just want to know. I don't know if this will change any decision making, but at least they will have a better understanding of HIV/AIDS and the impact it has on their life. It will be interesting to see how the experience for me and the students changes when we do the classes in the slum clinic. Those children have a whole different context for HIV/AIDS than the Nyumbani kids.

On Saturday we were able to see Ali on the computer, for some reason that day my camera wasn't working, but hers was. The first lesson you have to learn here is how to go with the flow and have no expectations! The kids loved seeing her, especially when she was sticking her tongue out at them!They feel so connected to our family, it's really wonderful.

On Saturday afternoon Sr. Julie (an American nun who's the volunteer coordinator here) and I took Ken to Karin for an hour for a treat. I had been thinking about how he never leaves the gates here, he never sees anything else. His life is so narrow. He hasn't had a fever for a few days and seemed better so we thought it would be fun. We drove down, teh 1.5k walk would have been way beyond his capabilities, and went to an outdoor cafe that bordered the road. So much to see! He was so excited, never stopped smiling, never stopped looking around, like a dry sponge soaking up water. He wanted only a piece of bread and a cup of Kenyan tea, most of which he couldn't finish. 2 British Army officers drove slowly by and waved at him, that about put him over the edge! People would look at him, he's so obviously ill and malnourished, but he didn't seem to mind. On the way home Sr. Julie had him shift the gears and even steer (only when we were back on Nyumbani grounds!) he was so proud. He told mum anne and his cottage mates all about it, I really think it was the most fun he has ever had. We're all discouraged because even with all our efforts he has not put on any weight, and had fevers again this week. Still, for a little while we could all forget about all that and for an hour he could be a little boy on an adventure, seeing the world. or at least a new corner of it.

On Monday Donna, (another volunteer),myself and Mum Anne spent the day at a safari lodge,Whistling Thorns. Other volunteers had been and loved it so I decided I needed a day of R and R. It took an hour and a half to get there by matatu, 2 hours to get home. Still, it was incredibly worth it. They have a swimming pool! I felt so clean! we ate lunch on the veranda, they served personal size pizzas and I ate a whole one! It's owned by a British couple who opened it in 1992 as a base for their safari company. They have since added rooms, the pool, restaurant, bar. It's so lovely, and peaceful, the view is savannah and acacia trees. you can go horseback riding, on a Masai guided hike, or you can do what I did, lay by the pool and read. and eat. Mum Anne loved it, had never been to a place like that. It's not fancy, I know there's a lot fancier ones around, but it's so welcoming and low key and affordable. I promise to take anyone there who would like to go. You can check it out online, whistlingthorns.com I felt so refreshed, body and soul, until of course I was aboutl halfway home and already filthy again!

24 hours later I was at one of our slum clinics, actually the busiest. myself and 2 other volunteers were working on the data project. I had to go through the files of children who had died and gather demographic and medical data and enter it on a form. It was very sobering, and sad. Reading their social situations, learning the course of their illness. I tried to feel each one of them, get a sense of who they were, so they would not be a nameless faceless statistic.
This clinic at least has running water (read working bathroom), but is very crowded and dirty. we actually worked in the hall on an old table. It's a 4 story building, construction workers were walking by us all day going up the stairs carrying bags of cement. No privacy here!

Going to the slums is always so eye opening, the sheer density of people is overwhelming. None of the roads are pave, there's garbage and animals everywhere. They are so full of life though,people walking everywhere, selling anything, kids running around,waving at you. I never saw any other mizungos. Kiberra, the biggest and most famous slum is a little different, there's a lot of ngo's there, so you see more relief workers and work being done. Where I was, Kariobangi, is on the eastern side of Nairobi. Plenty of slums to choose from!
Today all the other volunteers went to Nyumbani village to see it and visit the volunteers there, Sarah has gone there to spend two months. I had so much to catch up on, I will go another day. It's nice to have the place to myself!
Stay safe officer timmy, x0x0x0x little boy

The gift of technology

Through the help of a number of people, ali's patient tech support, rachel's husband Kevin's setting up my computer, Reuters News Service and my sister Kerry's generosity, the kdis in cottage D saw timmy and liz, ali saw me and the kids, then the kids saw Elizabeth and Jack, all for free over skype! We realized that we could get the wireless signal in the Cottage, so we set up the camera and over two days were able to hook up. We have the system down now, and as soon as Elizabeth fixes their glitch we can all see each other. Rightlnow we can see all of them and Ali can see us.The kids are amazed, I will never forget the look of sheer delight on their faces when they saw timmy wave to them over the computer!! they sang a song to ali and jack, watched jack smile and dance to the sound of their voices.Today Ali should be set up so we can see her, not just hear her voice (she sees us). We do it at night our time when the kids are done with their homework, great incentive to get it done. John wanted to know if since Ali lives in DC could we see President Bush, (Lord knows what he would say to him), Aweeno got confused and thought Ali's voice was my mom, we had to tell her my mom was dead and the technology wasn't that good, Ken just grinned and grinned and said over and over Hi ali!Say what you want about computers and cell phones taking over the world, I am grateful for the miracle.
I posted some pictures, check out the hair! Gaia, mum ann's niece, loves her baby dolls I had given her, and the new clothes that Mary R from my clinic and her family had sent for Christmas.
I met with the site director from PEPFAR. Dr. Melissa W and I will be visiting their sites in April and seeing how my program will be fitting in for them, it's pretty exciting. Everyone is beginning to realize the threat all these HIV+ adolescents are starting to pose and how little prepared they and the world are.
Miss you all, stay safe officer Timmy, xoxoxox little boy

gaia with her baby doll in it's new clothes

Me and John

First the embassy, then the classes

Celebrating International Women's Day at the Ambassador's residence in Nairobi was an experience I will never forget. The residence is not far from the embassy, it's a 2 story Kenyan style house, very open and airy, clay tile roof. It's not pretentious at all, very welcoming. Security was tight, we walked through the house across the veranda and into the backyard. The house is very well suited to entertaining, which I'm sure happens a lot there. They had a few tents set up with open bars, and staff circulating with platters of food. Which was all American and tasted wonderful!! I met the Ambassador, he was very nice and lowkey. There was about 100 people there, from all over the world, mostly women, many in native dress. I met women who were members of the Kenyan Parliament, professors, lawyers, activists. I met a former ambassador who had come out of retirement to help deal with the Somalia situation. (Thank God I had kept up with it through the NY Times online and could have an intelligent conversation, very interesting to get first hand information).The ambassador spoke, announcing a new American sponsored program to empower women in their struggle against gender based violence. The most powerful impression I had is all the women who come from lives so much harder and deprived than ours who somehow commit and rise above it, not just to benefit themselves, but who have inspired, fought for, and changed the lives of their fellow countrywomen. I cannot tell you how humbled and honored I was to be in their presence. They face things everyday you and I cannot even imagine. And they do it with such courage, grace and humor. Everyone I met was welcoming, interested in who I was and why I was here,offered me a part of their story. There was a kenyan female singer who ended the evening playing the guitar and singing songs in Swahili and English that were very powerful and obviously a very important part of these women's daily struggle, I will never forget the feeling of sisterhood, the warm kenyan night, the welcome breeze, and the awareness of how blessed I was to be there. You cannot help but be changed by it. At the very least it makes you examine what contribution your own life makes to the world.
I started my classes on Friday night. The Kenyan nurse, Moses and I taught the older teens who now live in the "hostels" here. Moses was awesome, the kids interacted, asked questions, and seemed like they really liked it. On Sunday with Sarah and the PEPFAR intern, Carrie's help, I taught the younger boys and girls. Again, the response was really positive, lots of questions, they really want to learn about their bodies and HIV. The feedback I got back later from the mums and uncles was also very positive. The kids are all looking forward to the next 3 classes. What a relief!
The thing that is most troubling though, is how little they really know, and these are kids that
should know the most! The implications for the further spread of the virus is really chilling. Between the ignorance, the stigma, all the politics and religion involved, the sheer number of adolescents emerging into adulthood, things do not bode well for this continent. The problem is so much more complex than I think the rest of the world realizes. ARVS alone are not going to solve the problem.
The next few weeks I am going to be going to the slum clinics twice a week. The program, lea toto, has 6 sites with close to 3000 (I think) kids on ARVS since 2005. All the volunteers are helping to go through their charts and update them. Nothing is computerized and there's such a hodgepodge of doctors etc working there it's hard to keep it all organized. That is one of the goals of the program, to get it more established, and have tighter controls on follow up. They really want to keep the number of kids lost to follow up etc down. I think most programs here are having some of the same growth problems. Once ARVS became available to the slum programs the emphasis was on getting as many kids as possible on them as soon as possible,it was literally life and death, and the record keeping has not kept pace.
A warm welcome to the blog for the 7th graders at Cherokee middle school. You can check out Nyumbani.org to learn more about where I'm at. If you have questions send them through David Bernhardt, I'll be happy to answer them.
I'm still enjoying my treats from my packages from home.
Officer Timmy, stay safe, xoxoxo little boy.

Great Day

First, here is a brief overview of my project. It is a series of 6 classes, taught by nurses, that are for HIV+ adolescents. They cover normal growth and devolopment, the immune system, HIV/AIDS, and prevention of transmission. We cover issues like how antiretrovirals work, why you can never stop them, how to tell a partner or friends your status. We will do a pre and post test to see if the kids learn from the classes and also get a look at how they percieve and feel about HIV. Hopefully, the data will show that the classes will help them make more thoughtful decisions.
I met with the country coordinator for PEPFAR (the US President's Emergency Plan For AIDS Relief) yesterday at the embassy. He was very helpful and very enthused about the project. There is a huge gap in services for adolescents. I think nobody thought they would live to be that age, and now they are a huge source of potential new infections. So many of them have also been through incredibly traumatic experiences, a population that is normally hard to deal with is even harder here. I have already been contacted by a PEPFAR site director elsewhere in Kenya who wants to use my project soon, doesn't even want to wait for the data. When my faculty advisor. Dr. Melissa Weddle comes in April we are going out there to meet with him. The country coordinator is meeting today with coordinators from other African countries and he said I will also be hearing from them.He and I are going to meet again and discuss consultancy, so I can get paid for some of this work. It can really turn into something I had never expected. One of the best things that came out of my meeting with him is he invited me for dinner at his home with his family, a hot shower and use of his American washer and dryer!!
Also yesterday I was invited to the Ambassador's Residence tonite for a reception in honor of International Womens Day. It's not every day that your handed an engraved invitation that starts" The Ambassador of The United States of America requests the company of Susan Gold...."
Pretty crazy!
Also last night we were able to skype and I saw Liz, Timmy, and Baby Jack!!! It was so awesome, the technology is such a gift. It wouldn't have happened without my laptop, thank you again Kerry and Reuters, Ali for patiently getting us all on line despite numerous dropped calls, and Jack allowing Liz to wake him up from his nap, come and sit in front of the computer and wave at me!
Another bit of good news I received yesterday was that UW IRB gave the final approval and go-ahead for my project, so I can start tomorrow night!
I also received notice that the 3 packages my family sent have all arrived. I picked them up today and am happily munching on chocolate and reading magazines. You sure do appreciate the little things here.
This was the very best news. The new combination of drugs that Sammy is on? His viral load dropped from over 100,000 to 7,000. Now that truly is a gift.
Ken is also doing better, he seemed to reach bottom about a week and a half ago, still fevers, vomiting, his legs started swelling, was really withdrawn. We really thought he was dying. But, he somehow has really hung in there and is slowly coming back to us. No more fevers, only vomits occasionally, and is interacting again. he does only weigh 13kg still. Last night he was sitting on my lap, it's like holding a bunch of toothpicks.I'm always so careful when I move him, he seems like he will break. I realized I could put my thumb and middle finger together and encircle his thigh.That's how small he is. Again, every good day with him we're grateful and we don't take it as a promise of another. I think too of all the sammys and kens out there that don't get the care they do and probably never will.
Ann's sister Carol is doing well, pain is resolving. She sees the doc on Saturday and will hopefully get good news.
Update on my back: It's feeling very good, only occasional pain, mostly when I'm tired. We all got new mattresses which helps a lot. The kids are very protective, remind me not to bend over, no I can't pick them up. instead they say"sit down so you can hold me." When I got here all the D kids had to stand in line, I had to lift up my shirt, and they all had torun their finger along the small scar. Then they pronounced: Your doctor? He is who? He is very good. I agree.
I will try to write over the weekend to tell you all how the classes went and the reception with the ambassador. Miss you all.
Timmy, stay safe and xoxoxo to little boy (double because I missed it last blog)

Post-op news

I spent the last 4 days with Mum Ann's family, being a mizungo presence while her sister Carol had surgery on her leg. The car she was riding in in August was hit by another car and she had a broken femur (thigh bone). Luckily she had insurance, as did the people who hit her. unluckily, the first doctor/hospital that treated her didn't set her leg right, it never healed, she was in tremendous pain. Her x-rays found their way to another doctor at another hospital, he operated again, removed what the first doctor had put in and put in a new rod and pins. he unfortunately, also left in a piece of tubing. On Friday she had surgery to remove 2 of the 3 pins and the leftover piece. This doctor is very nice and seems to know what he's doing. The hospital , Aga Khan University Hospital, is on the other side of Nairobi, and is where the embassy people recommend you go if you need medical care here. Carol's brother took her on thursday night to be admitted, her sister Grace and I went Friday morning. It took over 2 hours to get there, we took the city bus which is safer than a matatu, to downtown Nairobi, we then took a matatu to the hospital. It's actually very beautiful, the grounds have lots of flowers and trees, there's lots of open spaces, the windows in the rooms are all open, a lot different than the sealed buildings I'm used to working in! Carol had her surgery on Friday, we were able to see her for a few minutes before and after, but we never saw the doctor. When I asked the nurse if the doctor was going to come and talk to us and tell us how it went, she looked at me like i was crazy! She said he was already back in his office and couldn't be disturbed. Carol said she never saw him either! I did finally see him on Saturday, all he would say is it went well, everything would now be fine. Carol was given all the xrays, even the hospitals don't trust themselves not to lose records! When I look at the xrays the bone looks lined up right and appears to be healing, I look forward to more expert readings from my visitors! It's so hard, you don't want to push and be an annoying American, but a little information would help! So we went to visit again on Saturday, again a 2 hour trip and because you can't travel after dark you have to leave early to be sure and be home on time. By the time you get home you're filthy, exhausted, and can barely remember your visit! We brought her home yesterday, she sees the doctor again on Saturday, can hopefully begin walking after that. This has been such a long painful ordeal for her, she's unable to work, has been on crutches. I know she's anxious to get her life back. I was glad I was there, I don't know how much help I was. I did keep her 7 year old daughter Gaia distracted, she loves my mizungo hair! She likes to comb it, of course it's the first time in my life I've had hair long enough to comb! I'm going to take a picture of my hair this week, I didn't mean to insult my camera. It probably has as much to do with my photography skills as the camera! I will work on better pictures.
I will post another entry tomorrow, I am getting ready to start my project and Barb K gently reminded me that not everyone knows exactly what it is. So I will detail that tomorrow.
Next time you go to your clinic/hospital/ doctor as frustrating as it may be, be grateful.

more pictures

I am going to be with Mum Ann's sister Carol all weekend as she has surgery tomorrow morning on her broken femur. I will write a longer blog entry over the weekend and hopefully publish it on Monday. All is well here, kids are hanging in. hopefully have added a picture of gaia for her friend mahala and a picture of the birthday girl, aweno. I don't have a very good camera this time so I apologize for the quality,I will definitely have to think about bringing back a more expensive one, which is always a risk.