Erto Update

Erto’s second birthday was April 25^th, though he won’t know it, because birthdays in this family probably don’t get celebrated with much fanfare. Just another day to mark the passing of time and a child’s getting bigger and needing more food to survive. 

But this didn’t stop me from offering to have a small party for him – nothing fancy. A store bought black forest cake (with strawberries on top!), whole milk and oranges from the tree in my garden. They should actually be called “greens” because no one waits long enough for them to get orange before they want to eat them, so I figured I would take some to this family before all my neighbourhood kids had taken care of them.

It dawned on me a few months ago that Erto’s reception of me over time had turned from gleeful giggles, smiles and waves to a seemingly random response combining one or two of these or pure disinterest and even crying.  Maybe he knows I represent this medical procedure we are plotting on his behalf, but I doubt it.  More likely, he likes me most when I come with food, but since he doesn’t always know if I have food when I arrive, he acts happy until he knows for sure, then he gets disinterested.  How can a child at 1 ½ years have already figured this out? 

But looking back, he was great when we had cookies when we got the passport photos – he even let me hold him.  Then as I passed their house more often without cookies, his interest waned.  But on his birthday, he must have sensed something was afoot, because he was smiles from ear to ear and back again. He even shook my hand to greet me. Very cute.

His siblings and a few neighbourhood kids were equally expectant and courteous so Cathrine must have talked up the party. She might have been disappointed when I didn’t arrive with gifts for him, but I just didn’t have enough money for that.  Still, she was gracious enough not to ask.  The reason I will do this type of thing for her family, other than because I just love Erto, is because she have never asked me for anything except help for her son and her kids don’t ask me for things either. They have nothing, but they are polite to me and do not beg. When I leave, I will be giving her as many of my household items as she can use, especially the blankets and towels.

So I pulled the cake out of the bag, stuck some candles in it and lit them. The kids were sitting quietly around the room; only Erto, his mom and grandmother had chairs to sit in. He stared at the cake with wide eyes. I tortured the other kids by making them sing “happy birthday to you” a few times before we actually cut the cake.  They never quite got the song right, but we tried. Here, the tradition appears to be that you take icing off the cake and put spots of it all over the birthday kid, so Erto sat there with icing on his face.  Better him than me.

I told Cathrine to make a wish when she blew out the candles for him and I made a wish when I cut the cake. I am thinking both of us wished for the same thing for young Erto.  I then tortured the kids again by asking them, “who wants cake?” before I would give anyone a piece.  Like duh, who doesn’t want cake? 

I left the extra unopened litre of milk for them to use later, along with the hand towel I brought to clean things up, since she didn’t really have one of those either. I gave them a bag of oranges and invited Cathrine to send the kids to see me the next day after work to get more oranges.

I left around 5:30 and I am not at all sure what, if anything, these kids would be getting for dinner. Cake, milk and oranges certainly wasn’t enough, but at least it was something different.

Meanwhile, we have a date and are making plans to go to Johannesburg for the first doctor’s appointment on May 8^th.  They talked about flying Cathrine and Erto there, then wanted me to fly with them, then realized there isn’t enough money to do that. So now, we are looking at a 6 hour bus on Monday the 7^th, an overnight in Jo’burg, an appointment at 1 p.m. the next day, then a 6 hour bus ride back to Gaborone leaving Jo’burg at 4 p.m. and an overnight in Gaborone before a bus ride back to Otse the morning of the 9^th.  With a two year old who only likes me when I feed him sugar. 

This isn’t a vacation. A six hour bus ride with a two year old, an overnight, a taxi to the doctor’s office, waiting around for appointment, appointment, taxi back to bus station, waiting for bus then six bus ride to Gabs, overnight there and then bus to Otse.  I am putting in my bus time, to be sure.

After this appointment, we should have a treatment schedule. There will need to be more fundraising or connections made to pay for his accommodation there in Jo’burg because travelling back and forth via bus every two weeks with two full length casts on his legs just doesn’t make sense.  I will be sending a letter to the Rotary clubs in the area to see if anyone will help us.

The good news is that a local physical therapist is attending a Ponseti Method training this weekend in Cape Town and will then intern with the physician in Jo’burg at his casting clinics to learn how to do this properly.  I am not sure he will be ready to treat Erto in Gaborone, but the next children that come along will benefit from this. My friend Tshepang, who has a child who has been successfully treated, is leading the local charge to bring awareness and find resources to make all this happen.  We are scheduled to speak to the Rotary Club of Gaborone on June 2 and maybe will get some donations from them to help as well.

Given all we have been through, I am cautiously optimistic. I won’t sing and dance until he starts and then completes treatment and he can sing and dance with me. 

Meanwhile, I visited Susan, another volunteer in a village a few hours by bus north of Gaborone and met a 13 year old girl with two club feet, much worse than Ertos and never treated.  She has a wheelchair which is too small and can’t walk at all. She prefers to pull herself around the compound than using the chair, and had open sores on her ankles where the calluses split open.  I will have to ask the Ponseti people what they think, but I have a feeling she is too old for this treatment. Yet maybe there are other options. Apparently she had boots or braces fit for her in Gaborone last June, but no one went to pick them up for her. Who knows if they will still fit.  Susan spoke to clinic nurse and mother about following up on these things.

This young girl is smart, you can tell by talking to her, but hasn’t been to school because of her feet.  She is able to care for herself (she is incontinent because a surgery she had must have nicked a nerve somewhere). She needs to be in school but like so many other disabled children, is kept at home and hidden because people don’t know to push for school or equipment. There are three children with Cerebral Palsy living in one small village near Susan who spend their days on the ground. They need wheelchairs, but because they can’t care for themselves, are unlikely to ever get into a school here. The mothers of these kids don’t know what they should do, so do what they can. Some people in the villages here believe that a child becomes disabled because of something the mother or father did when the mother was pregnant (not just drugs or drinking, but any number of acts unrelated to how a foetuses cells would divide and grow can get blamed on the parents, mostly the mother.) Well that is all for now. Off to get ready for my fun trip.