Roma was supposed to come last week, but only got here today.
A full checkup and preparation for the surgery is planned for tomorrow.
Roma has been abandoned twice… First by his birth parents, and then again, by his adoptive parents, after they’ve learned about his condition.
Roma is from Pryluky, where we took Timofey S. on Friday.
We will need help with formula and the supplies for the surgery. The ‘meal support’ for the nanny will be provided by our ‘Agents 031′ Volunteer Network. We’ll only know the exact amount we’ll need after the checkup.

UPD 08 DEC 15
Father Nikolay held a prayer service for the health of Roma V., anointing him with oil. Olya brought him a gift — an icon from Pochayiv Lavra. It’s been 9 days since Roma’s mother died…

UPD 16 NOV 15
Roma went back to the orphanage today. Since he was in contact with chicken pox, he will spend the next three weeks in the quarantine room at the orphanage.
It’s the second time this year we’ve had a chicken pox outbreak Смайлик «frown» We already made arrangements to transfer Roma to a neurology department, but now they cannot admit him…
What has been done: contrast MRI, overnight EEG with video monitoring, a couple of punctures, shunt checkup, blood and spinal fluid tests for TORCH and other infections, PCR, consultation of neurosurgeons, consult with ophthalmologist, and consults with three different neurologist (including Martynyuk — lead neurologist in Kiev).
Unfortunately, all neurologist came to the almost identical conclusions… The boy is very difficult. He needs palliative care :(( Roma has been prescribed a anticonvulsant therapy and passive forms of rehabilitation. There is no need for surgical involvement for now.
No matter the situation, we still hope very much, that there is someone out there, who after considering the complexity of Roma’s condition would be willing love him and to accept him into their family.

UPD 05 NOV 15
This night Roma V. spent in ‘an astronaut’s helmet’. He got the EEG monitoring, which we wanted to do last week. For the 10 hours during the night Roma was videomonitored and covered with sensors that read his brain activity; this should help us understand the nature of his seizures. We had to take him to a private clinic, as there is no such equipment at the Institute. What we want is to understand the origin of the epi, and how and where to go from here, to improve Roma’s condition. Correction of anticonvulsant therapy.
Pictured is the preparation for the procedure. We will have the results next week.

UPD 29 OCT 15

Roma came to Kiev for the planned MRI and checkup.
We have some very good news:The residual tumor, the one in the vital parts of the brain, has decreased significantly!! By 20-30%!
We have made an appointment for him with a private clinic for an overnight EEG. We need it for the correction of anticonvulsant therapy. A neurologist has checked up on Roma every one-two weeks at the orphanage, and during the last month, Roma has been slowly taken off the Phenobarbital and started on Depakine. The idea was to see if Depakine works or if some other medication needs to be added.
But everything was cancelled as blood was found in Roma’s spinal fluid. Most likely, as a result of a two-hour drive from Pryluky to Kiev, which probably caused a vessel rapture.
Roma has a very weak vascular system, and poor blood coagulability.
He’s staying at the Institute for the moment.

UPD 16 SEP 15

Last week, on September 7th we were in Pryluky, visiting Roma. We didn’t bother him much, as his fever gets worse after moves and he was feeling bad a couple of days after the trip from Chernihiv. Now he’s a bit more stable.
We’re regularly talking to the management of the orphanage. About him and our other children and projects.
Chief not-on-staff pediatric neurosurgeon of the Ministry of Healthcare, Aleksander Duhovskiy, came to Pryluky, to consult on Roma. He recommends to consult with Smolanko Vladimir (Neurosurgeon in Uzhgorod). He promised to give his conclusion as for taking Roma to Turkey to the other Foundation in a couple of days. There’s a big question of whether Roma can handle the transportation.

UPD 03 SEP 15
Early this morning Roma was discharged from the hospital in Chernihiv. Two hours later he’s already at his orphanage.

UPD 28 AUG 15
Lena visited Rom today. As it turns out, Roma’s mobile has disappeared. Now we need to figure out as what point this happened: on the way or at the Institute… Maybe the nanny took it back to the orphanage… According to Lena:

The child looks good (considering his condition), a bit calmer, I think he’s feeling better after the shunt placement. I brought him diapers, wet wipes, diaper cream, paper towels and formula.

UPD 26 AUG 15
Today Roma is getting a new MRI, so that the girls from «The Future of Ukraine» Foundation get send them to their doctor in Istanbul for a consult: to see if there’s anything that can be done to improve Roma’s condition.
Roma’s finances:

Raised: 102,273.75 UAH ($4,475)
Spent:
Medication and surgical supplies: 92,202.73 UAH ($4,035)
Nanny: 4,300 UAH ($188)
Receipts (pharmacy, food…): 2,885.09 UAH ($126)
Gas for the ambulance for the trip to Chernihiv: 2,280 UAH ($100)
CT in Chernihiv — 500 UAH ($22)
‘Meal support’ for the nanny and clothes for Roma — ‘ Agents 031′ volunteer organization.
===============
Total spent: 102,167.82 грн ($4,471)
Left: 105.93 UAH ($4)

UPD 14 AUG 15
Roma got his second tooth!

UPD 04 AUD 15
Chernihiv! Roma is on his way!!

UPD 01 AUG 15
Roma is getting ready to go back to Chernihiv. In the time that he was with us, he’s gotten his first tooth! Roma is feeling a bit better, but the situation with fevers is the same. He starts the day with 36.2C and gets 38-39C fevers by nighttime.

UPD 24 JULY 15
RBC for Roma was given to us by the Center of Cardiac Surgery and Cardiology. Thanks to Larisa Ivanovna.
Roma’s condition, however, is bad. He’s been getting 39C fever again. Get Colomycin.
Nanny Yulia was switched out by Elena.

UPD 18 JULY 15
Roma’s temperature was at 36.6-37 for a couple of days! There’s also been a change in nannies. Olga was switched out by Yulia.

UPD 10 JULY 15
The surgery went well, but Roma still get high fevers… Each day a different level. Very low haemoglobin. Today he was taken into ICU again to get the blood medication.
His caring nanny, Olga, is waiting for him in his room. She makes sure everything is done in time and does everything in her power to help Roma get better.

UPD 28 JUNE 15
Our orphan Roma has been christened today! By Father Petr in the name of the St. Roman Sladkopevtsa.
And on Tuesday Roma will get his second surgery, placing the shunt. Hopefully, this surgery will improve his condition. We have already put aside an Ukrainian shunt for 4,000 UAH ($175) for him. If we could raise enough money for the American programmable Codman — it would be better, of course. Codman can be programmed to exactly match the child’s ICP. But we do not have the 24,000 UAH ($1,055). Plus, after the surgery Roma will need an antibiotics therapy as well..

UPD 24 JUNE 15
The fever decreased to 37.4C, thanks to the good treatment and care of the nanny. His attending surgeon wants to figure our the reason for the fever before the next surgery. As soon as they get their answer, Roma will have the shunt placement surgery.
Huge thanks to the ‘Agent 031′ Volunteer Network for the ‘meal support’ for the nanny!

UPD 15 June 15
Today Roma came back to the Institute of Neurosurgery in Kiev. Because of the bumpy ride the boy got a 41C fever. Despite the department being overcrowded (kids are lying in hallways) a place for Roma was freed up in a room. He has x-rays to exclude the possibility of pneumonia. The lungs are clear. Расписали лечение на несколько дней, нами уже закуплены необходимые препараты на 2 тысячи. Вечером приехала нянечка из детдома, которая будет сидеть с малышом.
Надо организовать для нее продуктовый блок.

UPD 10 JUNE 15
Yesterday, thanks to Elena D. and her mom, Roma’s CT scans were delivered to KIev. This morning they were already with Roma’s attending neurosurgeon.
As a result: Roma needs to come back to Kiev. Maybe for a couple of days only.
The situation with ambulances is that we needed to pay for gas the last time, when Roma went to Chernihiv. We do need to pay again, to bring him to Kiev. We also need to pay for his treatment.

UPD 25 MAY 15
Roma’s getting a CT tomorrow. The doctors will be deciding where to go from there. Roma is still getting headaches, pressure drops…
Pictured is the receipt for the CT and a written request for help from the orphanage. We already paid for the CT. Also, Roma has a new friend — a volunteer — Elena. She’s visiting him every day and gave him a mobile for his bed.

UPD 13 MAY 15
This morning together with Natasha we went to the regional hospital in Chernihiv. To visit our Roma. He’s been there for a month now and this is only the second time we’re visiting him. He’s in the ICU. He’s getting a fever of 38.5C everyday, but at least it’s not 40C anymore.
Our boy is coming back!! He started to respond to his surroundings again! He’s making noises, cried when his position is changed (probably due to the changes in the ICP). He has eye nystagmus, but is eating on his own, from a bottle.
We liked the department. Very clean, personnel is nice. Even though we did not call ahead — Roma is clean, cared for.
We brought diapers, wet wipes, medication. Thanks and hello from Roma to everyone who cares about him!

UPD 30 APR 15
New about Roma. Yesterday our boy was transferred from the Department for Infectious Diseases to the Pediatric Department at the regional hospital in Chernihiv, from where he went into the ICU. He’s getting 40C fevers; on Meronem (surprising the hospital has some, so we didn’t have to buy it).
On the recommendation of Roma’s attending neurosurgeon, he needs puncturing, to check the intracranial pressure.

UPD 08 APR 15
Roma has been moving a lot. Yesterday he went from the Institute to the hospital on Bohatyrska Str, where for the time of quarantine  a room has been provided for the kids from the Institute. And this morning a specially ordered ambulance came for Roma (Natalia paid for gas and brought a parcel to go with Roma) and he went to the Department for Infectious Diseases in the regional hospital in Chernihiv.
We’re hoping the conditions there are better than on Bohatyrska Str.
Dear Friends, we really need to find a volunteer in Chernihiv! Someone who could buy and deliver food, diapers and medication to the orphan child. We’ve covered all the needs for the time being, but it won’t last long. We’re going to visit him some time soon.

UPD 02 APR 15
There’s been a lot of turmoil at the Institute today. Due to the chicken pox outbreak and whole pediatric department has been closed for disinfection. Anyone who could be discharged was sent home, others were transferred to different hospitals.
Tomorrow we’ll know where are kids are at.
Natasha went with Roma and one other kid from ICU to the Department for Infectious Diseases. They had to wait for three hours in a hallway: the room isn’t ready, there’s no oxygen, no suction, doctors are shocked — they don’t know what to do with such difficult cases…
In the end, they gave us a written refusal to take in the kids, and they went back to the Pediatric ICU at the Institute.

UPD 19 MAR 15
Our Roma is getting his second surgery tomorrow.
It is a very complex one. Last time, due to an extensive blood loss, the surgeons couldn’t get the whole tumor out. In the two weeks since then Roma got a bit stronger. Today the doctors plan to get the second part of the tumor.
We have already purchased the materials for 15,000 UAH and we’ll get more for another 5,000 UAH tomorrow. These are the last of the funds raised for Roma.

UPD 04 MAR 15
Roma was transferred back to his room yesterday, he was vomiting and refusing to eat, rana  faver of 38C. Today he is eating and sleeping better. He has a new nanny. The whole tumor couldn’t be removed because of the extensive blood loss. When Roma gets a bit stronger, a second surgery will be scheduled.

UPD 25 FEB 15
Roma had surgery. It was a very difficult one. The tumor is very big. He lost a lot of blood. Currently in the ICU. Roma is a real fighter! Smiles to the anesthesiologist
We’ll have the results of the histology in a couple of weeks.

UPD 24 FEB 15
On Thursday, 19/2, Roma started getting seizures and was transferred to the ICU until the surgery, which is scheduled for the Wednesday, 15/2.
This morning the doctors gave us the list of the materials required for surgery. As the exchange rate is decreasing very fast, we’ll need about 20,000 UAH ($880)for the surgery.
Pictured are the receipts.

Поступления Роман В.

Расходы Роман В.