completely devastated....

Sun and Valence took Paul to Cherub (the local hospital that operates on disabled children for free), but instead of getting good news, we've received some news that has completely broken my heart. I'll paste in the email that Sun sent me:

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Ok, here is brief report of Paul’s visit to the hospital.

Valence picked Paul and one of his sisters today early in the morning and we all went to Mukono. The hospital was located right next to the Childrens’ Home (sort of orphanage). As we went there so early, we could meet the doctor first among many patients.

The name of doctor was Paul too. (It’s funny, today at the hospital, I talked met and talked with 3 Paul!

Doctor Paul wanted to talk to me alone first. (Oh, Valence just dropped us at the hospital and went to Kampala and picked us up at 1:30). So I went to his room. There was another Muzungu who was a student of Mukono University which located near the hospital. She was assisting Dr. Paul.

All I heard from the doctor was quite different what I heard from you and there is a bad news too.

What Paul has as disease is so called ‘Brittle Bone Disease’ or ‘Osteogenesis Imparfecta Congenita Tarda’.
- It’s inherited disease
- Boys have more possibility to get this disease than girlsThe patient can so easily get numerous fractures as their bone is too fragile as well as their skin is too thin and weak. The worst thing is whenever they have those fractures, they don’t even recognize as most of them are even painless. The reason why Paul has curved arms and legs was that he’s got so many fractures so far, and whenever it happened, as his - muscles are stronger than his bones so the bone’s form changed by the way his muscle pulled. (It’s hard to explain to you though… please understand. I guess you can find out better explanation through Internet search or from your mom.)

The bad news is as follows;
- Paul can’t get any surgery as it will be useless. His bone is too weak to get the surgery. Dr. Paul told me and Valence that if there is a doctor who says that he can get a surgery, it means he just needs ‘money’.
- Patient who has OI as disease, their life expectance is short. Dr. showed me some pictures of other patients who got same disease then he said the patience died when he was 20. The reason is as their bone is too weak but they are grown up so some point their bone, especially chest part, they can’t stand the gravity and pressure comes from the head and they collapse so that they are having hard time to breathe and most of them die with suffocation.

And when Dr. asked questions to Paul, we realized that Paul isn’t 15 years-old but he is 17 years-old after his sister.

So, Dr’s suggestions were as follows;
- Surgery is useless
- Best thing we can do to give Paul a proper and customized for him. He said normal wheelchair costs around 350,000 USH but in the case of Paul, Customization will cost more. So around 450,000 USH including transportation. He said, we do need to go to Kampala to meet wheelchair specialist and Dr. Paul should be there too so that he could let the specialist which parts of the wheelchair should be adjusted for Paul. He also added that sometime, it takes forever to make it so it will be better to motivate specialist by tipping some money too. If we do it will take a few weeks.

And get regular medical check-up or see a doctor every 6 months to see how his health condition is.

It’s already too late but if we can, we can provide him calcium tablets. He added that Paul needs to eat lots of green vegetable and fresh fish.

- Very important thing is we should be really careful when we carry him. And Dr. showed me what the best way to carry him is. Do you remember the way Enocka carries? It’s the worst thing to do! We should carry him by taking him from the bottom, so sometime we do need 2 people to do it better. And whenever Paul is sitting, he should lean on the wall or something so that he can avoid more pressure to his chest and can have more comfortable to breath. Dr. said if we do have customized wheel chair, then Paul just can sit there whole day only except when he sleeps. Only this way, we can avoid his further deformity.

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I'm really just speechless. We will do the best that we can for Paul. I know that many of you have grown to love him through this blog just as I did in person. He's truly an angel. Please continue to pray for him. I'll write more when I have words to say.