Here you´ve got the latest news about terrific Dani:
October 19, 2015
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.
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.
Kristiina, Tesfaye is our real angel.
Dani is growing, and soon will go back to school. Let me show what Tesfaye explains about him:
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.
Remember I told you few months ago Dani went to school? Well, he did not only go, but achieved!
*Today´s date in Ethiopian calendar is 3 Nashi 2007.
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.
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:
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.
So, Kristiina, Dani’s physiotherapy is continuing and we all expect improvements progressively.
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:
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.
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“.
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A few more friends have joined efforts to continue supporting Dani. Tesfaye explains it at the end of the below letter. As you read, Dani keeps motivated. He’s been medically assessed several times for the past months, and presumably he will be again. He takes it as a game. His mood is contagious not only to those close to him, but to all others in the distance, supporting or following. I believe we are starting to learn from Dani.
How are you? On 02/11/2014, we have mate Dr Zenebe after we have collected Dani’s urine specific gravity test result. The result indicates normal. He has recommended to test his urine specific gravity repeatedly with in intervals to see if there is some changes. he has also made some modification on his anti epileptic drugs that he thought Good for Dani’s situation,
Dani is taking drug combination of phenytoin and phenobarbital with increasing dose from time to time so far, but the Doctor modify for him 100 mg of phenytoin BID (two times per day) and to stop phenobarbital gradually to avoid it’s side effect, with close follow up of drug withdrawal symptoms (symptom that occur secondary to sudden discontinuation) that will happen due
to the change made.
Dr Zenebe recommended to see Dani with follow up if there is new symptoms and he gave us a minimum appointment of two month for January 31,2015. He has explained as well, if there is any sign and symptom before the appointment day to take Dani to him any time.
He has also suggested that if there is symptoms, as he is going to measure Dani’s intra-cranial pressure in the ventricle by making some hole through the scull and if there is pressure to apply shunting through the same spot that is used to measure the intra-cranial pressure, if there is no pressure to close it again.
While we have made all this multiple doctors visits from place to place Zelalem made comfortable situation for Dani by organizing caregivers driver, drive us himself and following closely Dani’s situation, i would like to thank him on behalf of you and Dani.
with best Regards“