Tag Archives: hydrocephalia

Rainy Addis

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Hola Kristiina,
Rainy season is once again hitting Addis, and Dani is making the best out of it with Tesfaye`s valuable help. He is cheerful, as usual, and eager to keep practicing, despite of the inconveniences.
Here, please find a few recalls from Tesfaye:
August 8th,
Dani is doing good and i have passed your big hug and plenty of kisses;

he is very happy as always he does.

Dani is showing a very good improvement in his gait (walking) activity
with the support of left KAFO (knee ankle foot orthosis) and with right
side axillary crutch. he is know walking slowly about 30 meters;it is like

walking distance from his bed room to physiotherapy room.

Hope fully this will improve his endurance,strength, cardiovascular
and his over all functional activity even better.
July 30th,

I have passed your plenty of kisses for Dani;he has responded with happy smile as always.

I have taken him for his appointment to Dr.Zenebe on July 14, after we explained Dani has
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 doing good with the new dose still he doesn’t show any withdrawal symptoms;he is doing very good.
And Dr.Zenebe give us next appointment for October 14 after three months to see any symptoms.
July 4th,
Although this days the weather of Addis is  Rain,chilly and cloudy;

Dani is able to manage it very well.He is doing good with his general appearance and regular physiotherapy.

We have received Dani’s school certificate from mekinisa school,
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.
Dan’s Teachers state on his card that he has  good improvement on
concentration,understanding, remembering, and fallowing orders, after comparing his activity through out the year.This is one big step for Dani,exposing him to different environment and situations helps a lot to improve his memory and motor learning.
This will  be a good indication to see even better challenges and more exposure to different new environments in the future.
Dani”s Continues follow up with Dr.Zenebe in chrismass hospital after two months will be in July,14;We will take him and discuss again about his medications.
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The Adolescent

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Dani

Hola Kristiina,

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.

Best Regards.”

“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.
Best Regards,
Tesfaye”

Growth

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Hola Kristiina,

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.

 

Vamos!

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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!

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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!

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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

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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.

Endet Neh

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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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Gain Through Pain

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Hola Kristiina,

Upon return from my journey up North, I would like to share some of our last experiences about Dani. Although geographically far, I am closely sensing the situations he is going through. Our friends and colaborators explain vividly the procedures undergone and the events lived. Dani is enjoying it, and that keeps us steady on the recovery path despite the occasional delays.

The latest report coming from Addis reads something like this:

“Dani seemed a bit tired compared to the last time, but he was still in a good mood and it looks like the physiotherapy is helping. He was able to stand up and take a few steps with help from the crutch. He now has the orthopedic aid on his foot and I think this is helping him to stand. Tesfaye performed about 1,5h physiotherapy and Dani was really responsive to it, although he did seem quite tired at the end of the session. He is now asking to go to the toilet very often (3 times in 2 hours), which Tesfaye says has increased in the past month.”

Dani takes it all as a game, and that is a great advantage that softens the challenges of his regular physiotherapy sessions. His attitude supports efective exercise for the timeframe we wait to move on with the forth visit to a clinical specialist.

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