Two Years

Hola Kristiina,

Since your departure our lives continued regardless the pain and the feeling of solitude. At times, living joyfully seems walking uphill. Many others, daily routine becomes a pleasure filled with valuable experiences, worth living every single minute. The last one was certainly your legacy.

My recent time off has certainly not been Dani’s. He has not been stationary. On the contrary, he has moved surely and all times accompanied by Tesfaye. Please find a comprehensive recount on the previous weeks:

December 3, 2015

Dear Roberto; how are you?

Dani’s General health looks fine and stable with the epilepsy attack the past five months. He has been continuing to attend his class regularly as well.

On the October Dani was celebrating birth day with friends and visiting families.

 

I have attached Dani’s picture while he is training with KAFO.

 

January 5, 2016

Dear Roberto

How are you; how is Christmas and New Year?

Dani is doing fine.

These days he has been showing amazing effort to help himself, taking footsteps with his crutch and KAFO, moving with wheelchair independently from his sleeping room to the football field which is very

Important activity that help him to participate with children any time he wants, he is trying to wear clothes with minimal assistance, and he continued to go to the school.

Dani was also having a great new experience that he never had before; Volunteers (T.J helling and the porch swim team) came to visit the children and took them for swimming in a local Hotel including Dani. Dani’s water experience was great and he was fine after swimming. This kind of challenge will bring better improvement and skills for him, the team were done a great job that makes all children happy.

I have attached pictures of Dani’s footsteps, swimming and video if that works for you; during swimming and how he could able to manage his wheelchair to go to the field.

 

January 18, 2016

On 14/01/2016 we took Dani to Dr.Zenabe with Zelalem for his continuous follow up after three months of appointment.

 

He has asked how is Dani doing? We explain that Dani’s general appearance is looking good and he doesn’t show any epileptic attack for the past six to seven months after he has been taking drug combination of Phenitoin BID(100mg in the morning and night) and carpamazepine BID(50mg in the morning and 100mg in the night).

The Dr. explained that it will be good to reduce the of carpamazepine dose in order to decrease its side effects and he has planned to change to 50mg BID(in the morning and night), for now to continue with the same dose not to disturb his classes with withdrawal sign and symptoms and to change it after four months.
Dani’s next appointment to Dr Zenebe will be on May 13/5/2016.

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Vamos!

Hola Kristiina,

Here you´ve got the latest news about terrific Dani:

October 19, 2015

“Dear Roberto,
we have taken Dani for his appointment on October 16 to Dr. Zenebe
since there is no any epileptic attack or any other syptoms, he has just
decided to continue with Dan’s current epileptic medications.
And he has appointed us after three months on January 14, 2016, to see if there
is any change after exposure to the external enviroment, class and temperature change
while he spent outside the compound.
I have attached Dani picture with the Zelalem in Chrismass hospital.
best rergards”

October 15, 2015

“Dear Roberto, how are you?
I have passed your big hug and warm greetings to Dani.
He is happy.
Tomorrow October 16, Dani has appointment for his follow up
with Dr.Zenebe. We will take him in the morning.
I have attached Dani’s pic while he was giving precast for KAFO.
Thank you for everything you are doing.
best regards”

Kristiina, Tesfaye is our real angel.

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Sing, Dani!

Hola Kristiina,

Dani is growing, and soon will go back to school. Let me show what Tesfaye explains about him:

“Dear Roberto;
How are you?
Yes it is true Dani is growing.These days he is very happy. He has spent by
singing traditional songs with all children for the new year. About the epilepsy he still
doesn’t have attacks after the antiepileptic drug (…)
modification made by the Doctor for almost three months now. I believe the
medication is helping for control.
About Dani’s school, they told me the school teachers are on meetings.
I will let you know as soon as I get the information when teachers are going to
start the class.

I keep telling to Dani about you that you are thinking about him every time…
i have attached Dani’s pics for you, while Dani is singing with his own words, as usual.
best Regards.”

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Happy Day!

Hola Kristiina,

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.

 

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A Little Big Progress

Hola Kristiina,

It’s been a while since the last time I told you events about Dani. We have managed to sort out future plans, and that has been positive.

Dani attends Mekanisa school since last month, and this is Tesfaye’s recount:

“Dear Roberto

How are you doing? I am sorry for my delay to respond immediately, that is till I will get full information about Dan’s class situations. The past days there have been letter communication between the special need school and Sele Enat orphanage and we have also physically appeared two times to explain about Dani and to see the environment. The psychologist as well come to see Dani and he has suggested that the class will be helpful for him and to progress him to the next level based on his understanding, activities and improvement in the class. The class include both activity of daily living (washing, brushing teeth, toilet use…..), skills (writing, reading alphabet….) and sport class. From the time we told Dani that Roberto has working hard for you to start class. His first word to tell in the compound, for children, staffs, volunteers and for guests come to visit he always saying that “I am going to start class”. And not only Dani but also we all become happy about his class.

On March 17, 2015, Dani has started his first class in Makenisa school in one of the special needs class, Zelalem ,Yifru (driver),Belaynesh(care giver) and me accompanied him to the school. While he get there Dani gave his usual warm greeting and happy face to his new teachers, they respond they are very happy to meet him as their student and they provide place to sit and continued to ask him and listen his words. Then Selam (one of his teacher, you could see her in the picture) give for Zelalem and me to read and fill duties and responsibilities to be expected and done for Dani.

Specifically the school didn’t ask regular payment at the moment except to provide the requested materials and his transportation regularly.

I hope it looks good place for Dani at the moment, it will be the place he enjoy and learn more from it.

Best regards

So, Kristiina, Dani’s physiotherapy is continuing and we all expect improvements progressively.

Special Needs School

Hola Kristiina,

One year went by since the beginning of our project, and two years are soon to come since we first met Dani. Both events are glorious in my life, and nothing but delight and encouragement came along.

Dani is living a comfortable existence, in his mind. Probably because he did not have the chance to live any other. I keep motivating people around him to try to reach a sustainable progress. At times, it is unknown to me what the extend of my efforts is, and I strategize new ventures.

The result of the last one is following:

“Dear Roberto
As I have mentioned for you,today march 4,2015 we have taken Dani for his appointment to Dr.Zenebe,after he has seen Dani he has asked about anti epileptic drug the he has ordered and how Dani is doing with it?we have explained for him that after the combination carbamine and phenition as he is not show any symptom and his general appearance looks good and the Doctor suggest that,as it is good to keep follow him with appointment and he has given a three month appointment for may,2015 since he is doing fine but he has also recommended to bring him in case of something happened.and he has ordered his anti epileptic drugs for three month and to continue with it.I will let you know about his special need class as soon as he has made his psychological assessment.”

So, yes Kristiina, Dani will likely attend special needs school. While we keep waiting for a decission on a possible surgery, Dani will try to use his time more effectively.

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Endet Neh

Hola Kristiina,

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:

December 18th:

Dear Roberto,
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“.

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December 22nd:

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“.

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January 21st:

Dani is doing good and happy as always,He is keeping on his daily physiotherapy treatment“.

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February 4th:

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“.

February 8th:

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“.

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