Tuesday, July 27, 2010

Day 31 and Pictures!!!

Lea-Celine returned today! She has quite a short haircut, and she clung to Kristin (or maybe it was the other way around haha) all day. Andreea (the big little one) gave Celine kisses. It was cute.

It was confirmed today that Raul's platelet count is too high, which means his blood is too thick, and he's being put on blood thinners. We don't know when he'll be able to return, but Dr. Delia said she would try to find out.

Alexandra learned how to blow kisses today! She also says "pa" and "bravo".

We decided that Daria is going to grow up and solve all the world's problems.

Mihaela told us today that Daniela has something called "Turner's Syndrome." I'm not entirely sure what that means, but I think it's chromosomal. I'll look it up tomorrow. Also, someone had said that Daniela would be going home soon, but it seems like that theory was wrong. Not certain.

Nicoletta was fussy most of the day, but she did eat most of her lunchtime bottle. And she enjoyed a nice massage with baby lotion this morning, as did Maria and Alina.

Maria spent a lot of time in the preschool room and the nonmobile room today. She loves the "Glee" covers of "You Keep Me Hanging On" and "Somebody to Love."

I'm going to Bucharest this weekend! Yes, that means I'll be spending more money, but everyone is going, and while before I wouldn't have minded staying here by myself, I've made some friends on this team and would like to join them. We'll be doing a quad room at the Marriott to save money, and we're getting massages--which I desperately need right now.

Some of us may be going either this week or next week to the facility in Barlad where Maiastra, Ana-Maria, and Sami are. We can't take cameras, though.

Speaking of wellness, once we got into Barlad tonight, I found myself feeling incredibly drowsy, overheated, and generally unwell. Going to bed tonight, and we'll see what the morning brings; I may have to take the a.m. shift off.

Monday, July 26, 2010

Days 22-30 (I think!)

First a couple notable things from the past several days: Celine is in Iasi, where she was being fitted for leg braces and getting ten days of physical therapy. Cristi is in Barlad, where he is getting a certificate of being handicapped—something he needs to be reevaluated for every year, despite the fact that one doesn’t grow out of Down syndrome. Raul left on Thursday to see a dermatologist in Barlad. On Wednesday (or maybe Tuesday) I watched Raul get his bandages changed. It is something I never want to see again, as I’ve never seen anyone in that much pain before, but I’m glad I saw it; it makes me more aware of the parts of his body I should avoid when picking him up, so as not to cause him pain, and it also makes me understand his condition better.

Now onto the “real” update. I had the “team journal” today, so I’ll just copy down what I wrote in it tonight. Expect an update on my weekend trip to Sighisoara later this week.

It all started when someone dropped a baby—-or so I thought. I had been asleep at 5am, dreaming a dream that involved a baby, when all of a sudden, I heard a loud noise and, in my state of unconsciousness, I thought, “Oh my God, someone dropped the baby!” I then woke up and realized that the noise had only been from Kristen (my awesome roommate) banging her head on the bedside table. Thankfully, the events of the day went uphill from there, with many exciting and notable incidents occurring.

The award for the Cutest Personality of the Day goes to Mihaela. She was the most adorable little mama today as she kissed and petted socks, leaves, and sometimes even the other children. From saying “bye, Petre” to “holding” her sister and saying “Gabi” to putting butterfly wings on her baby doll, Mihaela showed that beneath her often-rambunctious exterior, she also has a very loving and sensitive side. She also made me realize that I should keep my camera ready whenever she’s around, after I missed the most adorable shot of her running to hug her buddy Andreea.

The biggest event of the day was Maria-Cleopatra’s second birthday party. We gathered the kids and aides in the mobile playroom in the afternoon to sing to her, and some of the kids had cupcakes to help celebrate. This was a huge milestone for Maria; last summer, it seemed like every day I would secretly wonder, “is today the day?” Now it seems that in some ways, she’s not even the same little girl. Gone are the days when volunteers would shut up just to hear her laugh—a rare occurrence back then, it now happens every day. While her condition hasn’t improved, she has come very far. Now she is a recognized presence in the room—not because of her disability, but because of her personality.

This is my second team this summer, and it is a great one, as evidenced by the wonderful progress of many of the kids in the past week. Alexandra has been working on eating with a spoon, something she did two years ago, and today she ate her lunch all by herself! Roxie has been practicing standing and has really opened up in the past week; she is more interactive and expressive. It seems like Daria will bypass crawling and go straight to walking, and Marius takes more and more independent steps every day. Gabi, now out of isolation, is standing more, and Alina eats yogurt! The mobile kids have been practicing with spoons, and Roxie, Daria, and Alina want to get in on the spoon action, too. Nicoletta weight in at 9.5 pounds this morning, and she ate her entire noon bottle for me!

Paula ate some yogurt today, and she has improved in the past week, as well. She is more calm and willing to spend time outside of the usual happy confines of her crib and the jumper. She’ll play the piano on the floor, search the toy hamper for her keys, walk down the hall with someone, help Whitney push the stroller, and even venture outside!

A few of the mobile kids worked on potty training today, which I found out after I wondered why I heard Andreea screaming all the way down the hall. When she, Mihaela, and Ion were finished, Andreea came in, pouting, and sat with Jane before we realized she was still diaper-free!

I always struggle with how to end journal entries like this… If I try to be too profound, it ends up sounding cheesy and totally unlike me, but if I end it abruptly, I feel like I’m leaving something unfinished. So I’ll just say that tomorrow, we look forward to Lea-Celine’s return, as well as many more smiles, giggles, hugs and kisses, precious moments, and…well, you get the idea. ;-)

I'll post a lot of pictures tomorrow to make up for what I'm not posting now, as it is my bedtime. Good night!

Monday, July 19, 2010

Days 18-21

I got behind on the blog, and then-—due to renovations in the hotel restaurant—-the internet was shut off for a few days. I’ll try to summarize the key points of the past few days, but then I want to touch on something that’s been going through my mind this week.

*Mihaela and Gabi’s parents visited at lunchtime on…Wednesday, I think!

*Alexandra came back from Iasi, while Celine went TO Iasi. Alex has stitches in her leg and was separated from the kids for the first day, but then she was allowed back in with them part-time.

*Roxie was practicing “standing” and weight-shifting on Nestor, the blue donkey, and she fell off and bit through her lip(s). Lots of blood, some of which got on my shirt. But she’s okay.

*I haven’t seen Cristi since Wednesday, and Mihaela said he might have gone for evaluations, though nobody told her about it.

*Ionut is getting better at his head control; on Friday, I had him in the bouncy seat and he kept lifting his head. I also found his tickle spot, in case I haven’t mentioned it—he (sometimes) loves to have the left side of his back scratched. If I get him at the right moment, he’ll laugh like crazy.

*Raul has begun to try rolling over.

*Andreea, Roxana, and Paula are allowed in the playroom now! Gabi was allowed in for a morning but then she got a fever again.

*Unfortunately, Maria has spent more time in her crib than out of it. I just don’t have the upper-body strength to lift her. One day this week, I came in and an aide handed me a bottle for her before lifting her out of the crib and into my arms. I did okay for a few minutes, but she’s SO heavy, it hurts my arm when her head rests on it, plus I’m always afraid that I’ll move wrongly and hurt her. I’ve visited her as much as I could this week, though, and she’s been quite content.

*Little Mihaela likes to crawl into the cupboard in the preschool room, shut the doors, and then pretend to cry because she wants out.

*Friday afternoon when I left, I stopped by the playground to say “Pa” (“Bye”) to the preschool kids. Malika tried to get them all to say “pa” and give me a “pup” (a kiss), and she said “Bon voyage!” because she thought I was leaving. I told her I’m staying for three more weeks, and I’m not sure she understood me, but she did say “Bine!” haha

Now I have to say that I’ve been struggling this week, and it’s not only because I was the only volunteer at the clinic. I told you a few days ago that Raul has been lethargic. Well, he started getting fevers last weekend, and he’s been on children’s pain medicine, as well as antibiotics, so that explains the lethargy. A couple days ago, I went in to see him and there was blood all over his mouth and his arm; as it turns out, he’s gotten more blisters in his mouth, on his lips, and on his tongue, and he’s been biting inside his mouth, hence the blood. Friday morning was the worst I’ve since him—-he was crying because he was in pain, and almost nothing would soothe him. I couldn’t pick him up because he wasn’t entirely dressed or wrapped. I sang to him a little and rested my hand on his chest, and that helped a little, but he was still very miserable, of course.

I hated that I couldn’t do much for him (although he WAS happier in the afternoon—almost certainly because he had another dose of pain reliever). The first thing I thought of when I was told of his fevers and the antibiotic was, “Does he have an infection?” He looked so much better than I was expecting when I first met him, and he was in such good spirits, I wonder if I allowed it to make me think the situation wasn’t as serious as it might be. But at the same time, if you know me at all, you know that I overthink things and worry a lot. The thing is, I know that with children who have EB, it’s infection that can be fatal, not the blisters themselves. So I’m right to be concerned about this…right? I mean, I’m not thinking, “Oh my God, he’s going to die from this infection.” Of course not. But I’m also recognizing that, if it IS an infection, there IS that possibility. I’m trying to be realistic without being fatalistic, I guess.

So yeah…needless to say, I’ve been thinking about Raul a lot this week, especially because I couldn’t spend as much time with him as I wanted. On Friday, when he just kept crying because he was hurting, of course I found myself crying right along with him; in this way, I understand when other volunteers have told me they weren’t sure if they could go in and see him because it was so sad…But at the same time, I kind of feel like that’s selfish, in a way. We’re here for the kids’ well-being. I’m not suggesting that any of the other volunteers came here for selfish reasons, but I personally would feel selfish if I put my comfort before Raul’s. Sure, it’s sad to see him—-or any other child-—in pain, but his pain and loneliness are more important than my sadness. I think that, at this point, there are only two things that he wants: to not hurt and to not be alone. I may not be able to do much about the first, but I can sure as hell give him the second while I’m here.

It’s Saturday as I write this, and the next team will be arriving in a few hours. I have already told Mihaela that I want Raul as my “assignment” for the next three weeks, and possibly Nicoletta, as well, but she will depend on the other volunteers. Speaking of other volunteers, Susan—who was on my team last year—will be on this team! So excited to see her again!

Note: It's now Monday and the internet is (finally) back on! No pictures today, though, as it's late, it's storming (finally), and I'm going to bed.

Monday, July 12, 2010

Day 17 - Highlights

Just a few notable tidbits about today, as I'm quite tired and will probably go to bed early:

*Baby Nicoletta is back! She's in a bedroom all by herself, as she has to be isolated for a while. I got to cuddle her quite a bit. She's such a happy little girl! I didn't hear her cry once. I believe she's around 7 months old now, and she came to the clinic because she wasn't gaining weight? I'll have to double-check that. But I weighed her today, and she's about 8.5 pounds. Tiny little thing, it's hard to remember how old she is.

*Daria's mom visited today! And an aunt or other female relation. It was a tearful reunion. I'm not sure how often they are able to visit, but there's no doubt in my mind that mom wishes it could be more often.

*Celine is going to Iasi tomorrow for tests, but Mihaela said that she usually comes back in the same day.

*I didn't get to see Raul until this afternoon, and he didn't smile once when I was with him. Sad. :-( He made a few happy-like noises, but no smiling. He seemed fairly lethargic.

*Gabi seems to be getting sick. I went into her room (she's with the isolation kids) and found her without a diaper on her bum, but there was one wrapped around her waist and legs. The nurse came in to check her temperature a couple times, and she wrapped some wet cloth diapers around her legs to cool her off. When I was leaving this afternoon, I heard Gabi screaming as they inserted some kind of port into her arm and wrapped it so she couldn't pull it out.

*I found Maria's tickle spot. Well, it's actually a scratch spot--I used my fingernails, very gently, on her abdomen, kind of just under the bottom of her ribcage, and she LOVED it.

*Daniela got a haircut.

*My glasses were grabbed 4+ times, and I'm pretty sure I'll need to get new ones when I return home.

*Cristi cuddled me today. I know, I was surprised, too. I was holding Andreea in my lap, and Cristi just made his way up there himself and settled down, comfy as can be. Andreea didn't really care for that.

*I had lunch alone. Not fun. And the hotel is having tile put down in the dining room, to replace the carpet, so there was dust and stuff. We had dinner outside because of that.

*Judy thought she had asked Mihaela to order a certain dessert for us, one that others had talked about and we wanted to try, but I don't think that's what we got. We had pancakes (yes, pancakes), with a dish of Nutella. Sounds odd, to have actual pancakes for dessert, but it was quite delicious.

And now, for your viewing pleasure...

Train station in Barlad, Saturday


Daniela & me


Nicoletta & me

Cristi and the twins, Andreea and Roxana


Andreea & me




Sleeping Daria

Roxie on Nestor, the Not-So-Long-Eared Donkey

Gabi, wrapped in diapers