Friday, December 16, 2016

Trip Journal: Day Thirteen

I got an earlier start than usual and did some work while Maren slept in this morning. At 0800 I roused Maren and we got ready for the day, heading over to the orphanage at 0900. It was the usual greetings and we went into the room and waited for them to bring Jonah to me. When they brought him in he looked very tired, but happy to see me. They said that this morning he had been crying and when the social worker told them I had arrived the nurses asked if they were going to bring him out even if he was crying – the social worker said “of course” and once they started getting him out of bed he calmed down.

Once they brought him in it took a few minutes for things to settle down and the nurses to leave, with only the social worker, Marti, Dani, Maren, Jonah and myself in the room. Once we had some isolation I laid out his blanket and played with him for a while so he could get used to me putting my hands on him as I changed his clothes.

Valerie packed some good clothes for each boy to try and I had a selection of *gulp* 3-6 month and 6-9 month clothes for him to try on. The 6-12 month onesies fit fine just like they did on Niko. The 3-6-month sleeper was too small but the 6-9 month fit just about right, with the neck being too small – he probably needs a 9-12-month sleeper. The 6-9 month pants and shirt we tried fit perfectly. His torso is more appropriately sized, but his limbs are so tiny.

After we tried on all the clothes, it was time for a snack and I fed him another turbo bottle of rice cereal and milk. He actively reaches for the bottle when he wants more and I tried to go a little more slowly, forcing him to breathe between every few gulps.

After the snack the caretakers took him to get him changed and ready for the passport photos, which were to be done downtown. They dressed him up in a jacket and cap and we were off to the races. The passport photo went *okay* but not great – he was over-stimulated and being propped up on a stool was obviously not his cup of tea.  I did not get a chance to do a photo with him as the store was busy and Jonah was very upset. After the photo shoot, we walked back to the car and drove back to the orphanage. Jonah settled down during the drive but certainly had his moments – a ride in a car is a very new thing for him so it’s going to take some getting used to. We got back to the orphanage and said goodbye so he could relax and get some rest before the afternoon visit. I gave him a kiss and said farewell, which seemed to generate a response which I was happy to see.

This was the last passport photo of the trip, and we’ve now started getting into the “lasts” of the trip. We exchanged money today for the last time on this trip – enough to buy some items in Sofia tomorrow and have plenty left over for the beginning of our next trip. We will be seeing the missionaries for the last time on this trip tonight when we go to dinner with the missionaries here in Pleven. I look forward to the “lasts” of the next trip much more – the last time our children sleep alone, the last time they wake up without a parent, the last time they spend the day wondering if we’ll come back.

We’ll be back, and we’ll be back soon. We have a lot of work ahead of us, a lot of paperwork, and a lot of boxes that must be checked in a very specific order. We pray that the process will be swift and that we can arrange the finances, child care and other resources required to accomplish the next trip as quickly as possible. To all those who have helped Valerie and I with this trip, or plan to help with the next trip – thank you from the bottom of my heart.

Thursday, December 15, 2016

Trip Journal: Day Twelve

The trip has now settled into a familiar routine, waking up in the morning, getting breakfast, going to the morning visit and then lunch and then an afternoon visit and then dinner and then back to the apartment to talk to Valerie and the kids and then work for a few hours in the evening. The emotional stress of last week with the girls is lessening, but I still feel quite a bit of stress associated with the boys simply because their situations are less than ideal.

Today started with me up at 0600 and talking to Valerie briefly as she continues to work hard on things at home while I’ve been gone. It has been a blessing to get so much support from her as well as the rest of the members of the Rieben village. After talking to her for a bit I put in some work time and worked on some emails. Maren rolled out of bed not long after me and after showers we ran across the street to a small market to pick up some breakfast foods before returning to the apartment.

At 0900 Dani and Marti called and we scurried downstairs and hopped in the car for the short drive over to the orphanage. I guess I’ll acknowledge right now that the orphanage that Jonah is in here in Pleven is well-known in the Bulgarian adoption community, and has historically been the source of some rough stories relating to trauma, abuse and extreme neglect of children with special needs. I am aware of those stories and they sadden those of us who have seen what persistent and severe neglect can do to a child. In this case I am only going to discuss what I observe first-hand and my feelings about it.

When we arrived, we signed the usual paperwork and took the elevator up to the play room and waited for them to bring Jonah to us. Even though I had spent a few days with Niko and saw that he had made a lot of progress in the past 12 months, I knew the same was not likely for Jonah. When the door opened, I saw pretty much what I had been expecting – a small child which at four years of age is the size of a 12-month old. He has beautiful dark eyes, whispy thin hair and the longest eyelashes I’ve ever seen on a child. It’s difficult to wrap my head around because I know that he is 4 years old – he had his fourth birthday last month, but in every other way he looks and feels like an infant. He has very low muscle tone in his legs, he does not sit independently at all, and his hands are the size of most infants. He acts like an infant – his eyes move around the room and he makes sounds with his mouth, but makes no words. He is able to understand his caretakers but does not generate a response of his own verbally. It's obvious he spends most of his time in a crib or in a walker – the hair on the back and sides of his head is worn away and he has some sort of dermatitis where his head rests in the crib.

The great news is he appears to be a happy, calm baby in most every way. His reactions are infantile in nature and he enjoys playing as if he were an infant. He likes it when I make sounds with my mouth and he enjoys playing with my beard. He lets me hold him and play with him, perfectly content to observe the world around him.

At 1000 it is time for a snack and they bring me a bottle and a small bowl of rice cereal mixed with water. They claim he can eat from a spoon, yet the metal spoon they bring me is far too large for a child his size and when I use it it’s obvious he is not used to spoon feeding. I try the spoon but they keep telling me to feed him faster – way faster than I’ve ever fed any of my babies. After a few minutes I swap to the turbo-bottle (a bottle with a huge hole in the nipple) which he latches to and takes like a nursing baby – sucking it down quickly… too quickly. Feeding and teaching him to take food by spoon and then self-feeding will be a significant effort for him, but the priority will be replacing his cereal-and-water diet with real food, pureed as we’ve done for other children at various times.

Jonah’s medical needs make him an enigma. Although the doctor says his only medical needs is his heart (I find that ironic considering he’s a 4 y.o. the size of an infant) but we know it’s likely there are other issues going on. Valerie has proven to be an expert from afar when it comes to diagnosing our children correctly before they even make it home, and the likely idea is that he has Noonan syndrome (even through the doctor said a genetic test done in May came back as “normal”.)

After the morning feeding I asked to be allowed to put him in his crib for his nap, but was rejected with the justification that the director was not there and they did not want to take the “risk” of letting me do that. Instead I wrapped him up in his blanket and handed him off. Once I handed him off he was sad and cried… tough moment. But he didn’t know I’d be back later today and tomorrow, and then eventually I’ll just always be there.

We were dropped off at our apartment where we had leftovers from the night before and I worked while Maren watched shows on the Kindle.

The afternoon visit was a positive experience as well. Jonah seemed content (if not happy) to see both Maren and I and he was a bit more awake then he was in the morning. I spent most of the time simply holding him and playing with him but for a little while we put him in the ball pit and played with him. He would pick up balls and drop them forward in front of him and would also laugh and smile when Maren and rolled balls around or Maren crawled around the pit. After about 90 minutes he got tired and before things turned south I decided to hand him off – when we gave him back he cried a little but we consoled him as he left and it was ok. The director is out of the office this week so there is no hope to see where he sleeps, but we’ve been told we will be able to see his sleeping area when we return for the pickup trip.

Tomorrow is picture day! I’m hoping they will let me take some additional pictures, but the process is going to be complicated. Because the car we have is small, Marti and Maren must stay at the orphanage while Dani, myself, an orphanage driver, an orphanage aide and Jonah will make the drive to the photo place for the pictures. Hoping that goes well…

Wednesday, December 14, 2016

Trip Journal: Day Eleven

Today started out with the pleasant sight of snow coming down outside the hotel. It’s been cold while we’re been here but this is the first time it’s snowed. Veliko Tarnovo is a beautiful town which is rich in Bulgarian history and the sight of the town covered in snow is beautiful.  Maren and I rolled out of bed and got ready for the day, packing up a few things to take with us to the orphanage.

We finished off a quick breakfast and waited until it was time to make the 15-minute drive to Debelets, the small village where the orphanage is located. The drive only takes 15 minutes but Debelets is nothing like Veliko Tarnovo – it has the feel of a small agricultural town far away from the big city. The orphanage is soviet-style and is old, dark and depressingly confining.

Each morning we arrive, ring a doorbell and wait to be let in. From there we place blue wrappers on our feet to keep the floors clean and then we are escorted up the three flights of stairs to the area where Niko is generally waiting for us. If he’s not there we just wait – I’m not allowed to go look for him and I’m not allowed to wander at all – the only time I tried I received a snappy pull back into the meeting room. The morning visit went really well – when I arrived he was already in the room, laying on the mat waiting for me and dressed in a new outfit. Once I spent a few minutes “playing” with him – which pretty much means stroking his back or face and tickling him some, I decided he might be comfortable with me changing him into some clothes that Valerie had sent so we could determine his size.

Changing him actually went better than expected – he was a willing participant and I was able to get him into a new onsie which fit perfectly (it’s a 6-12 month), a sleeper which fit well but a bit big (24 months) and a pant/shirt combo (24 months) that was WAY too big for him. At least now we know he’s somewhere in the 12-18 month size range – sad.

After the changing we hung out for a while and we found that he loves to play with my fitbit and my cell phone. I put some lighter trans-siberean orchestra  music on the cell phone and he played with it and seemed to enjoy it and it relaxed him.

After we played, then we tried to do some feeding which went pretty well – he likes tomatoes, bread, oranges and other simple foods – he appears to chew well and although needs them cut or fed in bites he can eat normal food. He is not capable of feeding himself but will take food from my hand as well as from a spoon.

Following the meal, it was time for passport photos and we waited in another room (confined) while a photographer came to the orphanage and took the pictures in the other room. I saw the photo and it’s pretty funny – they put him in a white dress shirt with vest and bow tie for the photo. Following the photos we said goodbye and went to lunch.

After lunch I had just enough downtime to send Valerie photos, chat with her on facebook and take care of some work before it was time to go back for the afternoon session, which ended up being very short. He had only taken a 10 minute nap according to his caregivers and was obviously overtired. They tried several times to take him to his room and calm him only to bring him back 5 minutes later and hope he would be OK, which he was not. After three cycles of that I said “no more” for his benefit and we left for the day.

After the visit we walked around the older part of town, visiting the king’s castle and an old prison where revolutionaries were detained during the April Revolutiion. I got some great pictures and it was getting cold, so we scooted on back to the hotel where we are now getting ready to go get a quick dinner.