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“.
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“
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.
Dani has been very active lately visiting doctors, doing analysis, MRIs, and meeting many people on the way, all kindly guided by Tesfaye, our Guardian Angel, and Zelalem, and the priceless support of the friends at Sele Enat.
Let me disclose a summary of events that took place:
From October 18th, 2014
“Zelalem and I, have got the chance to meet Dr. Chiwen again before appointment day since we have got MRI ready for today October 18,2014. Dr. Chiwen explained almost the same thing after he has seen a new MRI report, “in the right side of Dani’s brain, in ventricle there is cerebrospinal fluid which is not blocked and can circulate to the 4th ventricle, 3rd ventricle and absorbed in the brain circulation. He says that if there is blockage there will be edema on the lt (normal) side of the brain as well so that since there is no edema (accumulated C SF) and pressure, doing operation for shunting it will not bring any change for his general health” he has recommended for him symptomatic treatment (any problem which appear secondary to brain loss). I have attached for you the scan of the new MRI of October 17,2014 which Dr. Chiwen explained about.”
From October 23rd, 2014
“…at the moment the Doctor’s suggestion is, operation is not benefit him much, but instead following him for symptomatic treatment like controlling the epilepsy and other symptoms, last time on my email Dani was seen by Dr Andarge (neuropsychiatric) which mainly examine him for his epilepsy, he was order some laboratory test(blood) and EEG(electroencephalography which detect electrical activity from his scalp) tomorrow (24/10/2014) he will have an appointment for EEG exam, then on Monday (27/10/2014) we will take his laboratory and EEG result altogether to Dr. Andarge.”
So as you can perceive there are only reasons for optimism. We are sharing our joy with Dani because we know he his health can only improve.
Following, please read the current status on Dani´s recovery. In addition to being steady on physio, we keep looking for solutions. Check out Tesfaye´s lines from September 24, 2014:
“How are you doing dear Roberto,(..)
About Dani’s surgery condition,if the entire surgery plan is taking place her in Ethiopia,i think it will be more supportive if he would be seen by another Doctor as well, that will help to identify a Diagnosis two or more Doctors agreed on, to see similarity of their ideas and to see whether there is willingness to do the surgery here or not. There are two or three senior neuro surgeon in Addis. One is the one you met last time,Dr mersha. I have tried to discuss with office in the silenat and Zelalem respond me in the same way, that will help if he would be seen by more than one Doctor.
If you would agree with this ideas it will be Good, during Dani is going to see the Doctor, if there is one person from silenat office, one person from your side (..) or any one you think of could able to follow may be i don’t know there
might be continuous follow up and myself, I hope that will create good understand about Dani’s surgery situation among all.
About orthopedic aid that will be helpful, I will late you know.
Thank you very much.“
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.