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…

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