Up Hill

Hola Kristiina,
I am so glad to report with a few lines from Tesfaye, how great Dani is doing. I am receiving as well other nice reports from Addis, that cheer me up. I hope these news make you as glad as I am.
November 15th,
Dani is doing fine. He is grown up and improving every day with his
functional activity and gross motor skills. His gait speed and his leg stride is improving.
He has been going to the special needs  school, with great interest as usual.
November 30th,
About Dani, he is doing very fine and his level of ambulation is
dramatically improving. He is now able to walk over 30 minute on different surfaces (slopes, down hill and on smooth surface).
And he is also attending his school with great motivation and interest.
December 10th,
Dani is doing fine and he has been following his regular physiotherapy

program with great motivation and interest as usual and he has been showing

improvement  in his gross and functional skills.

He will  follow up program with doctor Tim in Cure Hospital for the second
time after six months in December 21st to recheck his level of improvement after
he had had minor surgery one year ago.
Illona invited, Timo (physiotherapist), Sari(physiotherapist), and Tomi.

They were from Finland and spent some time with Dani.

Optimism

Hola Kristiina,

I just read an e-mail coming from Tesfaye. As usual, he tells me realistic Dani´s progress. But in his realism, he conveys a special optimism. You cannot imagine, Kristiina, how well this optimism feels, and believe it, it is not me the luckiest person to profit from his optimism,  but Dani.

Please, find a few excerpts from his latest messages about Dani:

April 1st,

“Dani’s is doing fine;the epilepsy condition is even much better

after my last email, he didn’t show any withdrawal symptoms since

then.he is adapting him self with the change in reduction of his medication
the ‘Carpamazapine’. the gradual reduction of his medication will help in the
future to control the epilepsy with minimum medication or non.
About his exercise program he is becoming use to it and he is happy to
exercise with great motivation and always ask to do his exercises regularly.”
March 14th,
“About his epilepsy after the reduction of the carpamazapine in the past
three months, he was showing one to two minute withdrawal for two days otherwise
 he is fine and that  doesn’t affect his daily activity. This sign is common after the reduction of epilepsy medication especially the  carpamazapine since it has addictive property; so that we have decided to follow him with the some medication with out increment of the medication and although his forth month appointment with doctor Zenebe is in end of April .
Dani’s overall epilepsy condition has showing very great improvement; he has spent
his days with different activities; going to school, doing exercise, playing with children
and studying without the epilepsy attack this is great result compared to his past
experiences.
About Dani’s function skills ,activities and level of cognition is also progressing from time to time with his great participation and motivation.”
March 4th,
“Dani is doing fine and working hard to improve from time to time. Even though this days the weather of Addis is raining like rainy season, Dani is working hard even in uncomfortable weather conditions. I have passed your kisses and big hugs to Dani; he is responding with great smile and happiness. The usual question he ask me is  “Roberto endet new” which means how is Robert.”
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Back to School

Hola Kristiina,
Here we go again for an update on Dani´s progress. Please find the latest details coming from Tesfaye:
February 21st:
“He is doing very fine and the wound at the left heel is fully recovered. This couple of days
on 17/02/20017 and 21/02/2017 we were in prosthetic orthopaedic center for the new
 left leg -KAFO, knee ankle foot orthopaedics- that prescribed doctor Tim for correction of knee and ankle, in order to keep normal posture and for stability during standing and walking.
Tomorrow February 22, he has appointment in Christmas hospital for his continuous follow up that he was appointed, after four months, with doctor Zenebe, for his epilepsy; though his epilepsy is controlled for a year and three months now.”
March 4th:
“On February 22, Zelalem and I have taken Dani to Dr.Zenebe for his continuous follow up.

After we have explained Dani is in good condition and his epileptic attack is almost controlled, the Doctor has decided to decrease the medication for five months.

On this week Dani has also continued to go back to the school again after four months rest due to the surgery. He is happy and excited.”

Minor Surgery, Major Step

Hola Kristiina,
I am glad to pass on to you the following news coming from Tesfaye. There will be a minor event, hopefully turning into a major outcome:
“We have taken Dani to Cure hospital on September 23, 2016 as per
the appointment.
Two Orthopedic Doctors assessed and checked over Dani after
I have explained about his current general health condition; they have
come up with the idea to do minor surgery(tendon release)
over Dani’s left Achilles and hamstring to help him to extend the knee
and to Dorsiflex the ankle joint (to make the foot to stand on it), and
they recommend for him to continue his anti epileptic drugs.
The plan after surgery is to use properly fit knee ankle foot orthosis
(KAFO) for left leg and ground reaction ankle foot orthosis  (AFO)
for right leg to control the ankle instability.
As per Dani’s surgery schedule he will check in on November 6,2016 that will be on Sunday and he will undergo surgery
on the next days (most probably on Monday).
Dani will also have neurosurgey follow up with Doctor Zenebe before
his surgery on October 16.
I have attached for you Dani’s day in cure hospital and
while he was taking hip X-ray as well.”

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Good morning, Kristiina

Hola Kristiina,

Forgive my delay, but as you say, I have been kind of busy the last month. I have met many good hearted, caring, and loving people, from your ample family and friends. Many of them unknown to me, some others known by your continual references. They have all shared their warmth with me, with my mom, and even with Chiara.

     But I want to update you about our progress with Dani. He is fine, playing drum with one stick and singing, as usual. Anne has emailed me the picture below, where he plays with little Dani, as well cheerful.

Image

Two Daniels

     Well, you knew that the orphanage had sent Dani for an MRI, and that doctor said that his clinical condition is Dandy-Walker syndrome. You knew as well that Hanna had gathered his clinical history and that some of your colleagues were networking to find a neurologist in Addis who would want to take over Dani’s case. So here’s where the news come:

Nathalie and her husband, Umberto, are further looking for neurologists. They have kindly contacted two of them, and we are waiting for their responses, although a birdie told me that help is on the way. As you know, this is not an easy task in Ethiopia, but they are highly supportive. We thank them so much. At the same time, I keep contacting the neurologist advised by your contacts and I am confident to get his response.

     On the orphanage side, Regula and Anne keep volunteering and they update me regularly with news about Dani. Hanna is in the loop, as well as the senior staff. They have kindly approved our wish. Your friends in Addis have showed interest to visit the orphanage, and perhaps drop a hand sometimes. This is very kind of them.

     As you can see, we are not alone in this. In addition to the help provided by the family and friends mentioned above, there is an immense number of people who are financially supporting, among them Jose Luis and Yolanda, Irja, Emilio, Mima, Patricia, Dacio, Rene, Sergio, Amelie, and Julian, Tea and Carmine, Rossana, Ruth Elisabeth, Juliane, Carlos, and Mateo, Sahar, Monica, Matthew, Stina, Tanis, Linda, Päivi, Melanie, Giorgia and Veljko, Isabelle, Leila, Vera-Maria, Matthias and Andrea, Giorgio, Eloy, Eija, Liisa, Ville and Outi, Titta, Laura and Markus, Hilkka, Tuomo and Sirkka, Hannu and Kali, Terhi, Jaakko, Reima, Arja, Petri and Viljami, Laura, Viivi, Anna and Eva, Laura, WFP colleagues in Copenhagen, Vikke, Tiina and Tatu, Pohjan Veikot, Kaj, Stefan and Mirja, Kulkijat, Pia, Familia Sanjurjo, Prof. Hagemann, Maria, Maria, Riitta and Antti, Antti and family, Kaarina and Mick, Teuvo, Tanja, Nadja and Noora, BJ, Sirpa and Sofi, Marie, Rebeca, Carlo and Chiara, Helena and Hannu, Helena and Matti, Anne, Anna-Riitta, Maija and Kimmo, Annukka, Annikki and Veijo, Isabelle, Susanna, Tiina and Timo, YMCA Oulu, Anna ja Petri, Kaisa and family, Yobdar, Hannu and Pirjo, Anna-Kaisa, Kalle and Aapo, Irja and Teuvo, Helinä and Pekka, Riikka and family, Birgitta and Panu, Chiara, Manuel and Regula, Veera, Markku and Soile, cousin Elina and her family, Eeva-Maria and Kimmo, Ullamaija and Kaarle, Inma and Miquel, Pauliina, Atte, Marianne, Henrietta and Klaus, Aira and Seppo, Auli, Risto and families of cousins, Leena, Pentti and families of cousins, Veera, Jessica, Andres and Mercedes, Marta, Rafael, and Mariaana and Veltsu. But this is not all, because support is still incoming.

    Kristiina, I would like to let you know that we do not forget about Izabelle, our travel mate, and Desta, our driver. Please tell them that our thoughts and prayers are with them.

Talk to you soon, Pupunen.

Roberto