he is very happy as always he does.
walking distance from his bed room to physiotherapy room.
I have passed your plenty of kisses for Dani;he has responded with happy smile as always.
good general conditions, no epileptic attack for almost nine to ten months and he is on school brake
as well ,then The Dr.the decided to decrease the dose of carpamazapine to 50mg morning
and night;that was 50mg morning and 100mg night and to continue with the same dose of phentoin.
Dani is able to manage it very well.He is doing good with his general appearance and regular physiotherapy.
That his card shows in two pages written in Amharic , subjects he has been taking(Food training,physical exercise,communication,matching and training,self care,toilet training,and painting) and improvement he has scored.
Dani looks like a young man. The child we knew is starting to fade away, turning into an adolescent.
Please find Tesfaye’s recount on his last events:
“Dear Roberto; how are you these days?
Dani is doing good and I have passed all your meseges about his
learning, practice and that you are thinking a lot about him as well.
He was very happy and he was saying “eshi, eshi…”that is to say Ok,Ok….
In the last week, Zelalem and I took him out for Dinner out side Sele Enat compound,
it was a good experience for Dani; he was giving his charming face and hand for
greeting to every body passing beside him.
Dani was busy the past weeks beside his class and practice, we also took him for shopping as well to buy for him jackets, tshirts, underwears,
trousers and what he needs especially for this rainy time and he was very happy.
Oona has also come to visit Dani as well.
Dear Roberto;Thank you very much for everything.
“Dear Roberto;How are you doing?
Dani is doing fine, he has no epileptic attack even after his last appointment.
he is showing good progression with standing and walking.
And he is still attending his classes,they will close the school
for summer after two weeks.
Thank you very much for everything.
Last developments in Dani´s life are positive. While he practices daily, the incidences on his health are diminishing. At the same time, he is growing. Soon, he will be a grown up. In the meanwhile, Tesfaye is taking good care on his routine, encouraging him to continue practicing.
Let me show you a few graphic evidences.
We are happy to celebrate your birthday today. In different places but similar events took us to wonderful times. We cheer those moments and remind them warmly. Happy birthday Kristiina!
Dani is doing good, but his little friend Dani has departed to a different continent. Little Dani will be happy there, and so it is with Dani, although he might not understand it yet.
Everything else is good. Dani keeps practicing and visiting doctors regualarly. Soon he will “need knee ankle foot orthosis (KAFO) to support and stabilize the left leg, which is recommended and will be helpful for his symmetry and weight bearing.” We will be happy to support with it.
Last weeks have been information prolific and Dani visited Dr. Zenebe. Doctor has concluded that for some time a surgical intervention should not be beneficial, and that is what you can read underneath from Tesfaye´s lines:
I have addressed your thought and everything what you said to Dani, he is happy as always and he was acting like dialing phone to you by saying Roberto,Robeto….”endet neh” means like how are you Roberto“.
“Dani is getting better with his urinary problems, and he is even in good mood after the adjustment of his epilepsy drug (phenobarbital).
As you said Dr Zenebe’s plan of treatment is caring and seems well planned,after we have made multiple Doctors visit,Dr Zenebe give as a better clinical judgement and opinion so what we have here is that to follow his plan of treatment,as I explained for you,Dani will have the appointment in January 31,2014 as part of his continuous follow-up,to see whether there is need for shunting or not,and other symptoms“.
“Dani is doing good and happy as always,He is keeping on his daily physiotherapy treatment“.
“Zelalem and I have taken Dani to Dr Zenebe for his appointment of two month on Monday February 2,2015.
we have explained to Dr Zenebe that Dani was showing some sort of withdrawal symptoms after phenobarbital is gradually reduced and finally stopped to give for him,The Dr. decide to replace for him combination of carpamine and phenytoin instead of phenobarbital and phenytoin.
We have asked him about shunting possibility as well,he has explained,Dani has no good sign for shunting at the moment and as that will be good to check him in follow up.And He has given one month appointment for march 02,2015 to see how he is doing with the drug combination and if there is any new symptoms as well“.
“Dani is fine and he is better with the new drug combinations and although it seems he need long period of rehabilitation time since other treatment(surgical innervation) is not done for him by this moment due to his conditions and Dr’s opinion.
Yesterday while i went to treat him,there was ceremony with children in the compound by two Ethiopian family and he was very happy I have attached some pictures while he was attending the ceremony“.
Some weeks ago I did update the bank account post with the following message:
We are grateful for the support received and will be implementing our project for the next few years.
For the moment we kindly ask to halt donations as the project is sufficiently funded. We will, therefore, concentrate in the implementation phase.
Dani´s health is our utmost desire and focus.
Despite of it, we keep receiving donations from friends and colleagues who want to drop their contribution. It will be certainly added to the project and we are grateful for it. However, we encourage donors with warmth and respect to kindly discontinue deposits.
Now Kristiina, I leave you with Dani´s basketball skills.
Right before our celebration of midsummer-fest, I wanted to share with you Dani’s gorgeous hyperactivity and optimism with Tesfaye.
We have finally agreed on a physiotherapy plan for Dani. Tesfaye, experienced physiotherapist in Addis, has presented us a draft with the hours he is going to spend with Dani. Four individual hours per week, plus one and half hours included in his regular visits to the orphanage, should be a good starting point for a consistent and regular physical practice. Dani is going to love it, as he is very receptive to exercise and company.
We are currently finalizing the operational aspects of the “physio plan” and although we do not have a time limit, it will be dependable on the next results presented by the Children Hospital at the Universitaetspital Basel, where a neuro-paediatric doctor has agreed to study Dani’s case.
So, Kristiina, as you can read we are steadily advancing, and once more, we must thank all the people engaged in bringing lots of smiles to Dani’s face.
I was thinking about our first trip in Ethiopia, now a year ago. We arrived to Aksum, expecting to find reminiscences of an ancient civilization. Instead we enjoyed our time under the immense Warka tree in downtown, chatting with the local kids, and watching the goats acrobatically reach the lower branches to eat its leaves.
My memories brought me back to Dani, and I would like to explain you his progress on behalf of our friends in Addis, who are tirelessly looking for his well being. So I take the liberty to quote their lines:
“Last week, (the)(…) occupational therapist went to see Dani. She gave practical advices to the staff of the orphanage in order to allow Dani to become more independent, like for example letting him dress himself. They were very receptive and Dani is cooperative. She also told them to make him wear shoes so that his good foot doesn’t get more deformed. (…). The regular visit of a physio is very important for Dani (…). It is important to maintain and work on what Dani can do in his actual condition and only a physio can help regarding his physical disability. The occupational therapist can advise the physio and the caretakers but cannot do the job of a physiotherapist.”
In addition to this, Kristiina, our friends keep looking for a neurologist that could see Dani, and all of us, in different countries, are looking for similar possibilities.
But now, Pupu, I will keep responding to the numerous people who are helping Dani, while I enjoy our Warka tree memories.