Every day, Sandra amazes me with the amount of hard work she does without even the slightest protest. For a little girl who had been away from her family and in residential care for malnutrition for the past 5 months, she is one of the most agreeable, cheerful, persistent little girls I've had the pleasure of working with.
A large family group of volunteers visited Casa Jackson this morning along with the rest of us. The ratio of volunteer to baby was just about even, so every child got a lot of hugs, cuddles and loves. The only downside to this was that just about every single child was occupied all morning long, leaving me with a very limited selection of children to work with. And by limited, I mean only Sandra (who I was bathing when the family arrived and selected their babies for the day). While I wanted to work with a number of children this morning, I would be lying if I said I didn't enjoy our four hours of quality time together.
I have seen so much progress in Sandra since I've returned. It feels as if every day there is something new and exciting that I see emerging in her. I put Sandra in side-sitting for the first time today and helped to extend and stabilize one of her arms and encourage her to shift her weight over it a bit. She surprised me by not just activating her muscles to really work at holding herself up, but doing so while maintaining good head control for about 15 seconds several times. This was a huge challenge for her, and one that I was trying on a whim. But she really held her own! I bent her elbow a few times to see if it was just extensor tone keeping her arm straight, but no. She was really using those little muscles of hers. I was even able to let go a few times!
Along with the strength she is clearly developing, she is making progress in other areas as well. She has been much more consistent in her imitation of different sounds; while each utterance requires a lot of effort and time on Sandra's part (and patience on mine!), she has begun to make the "B" and "M" sounds. These are a challenge for her as she struggles with lip closure. She was especially motived to make the "B" sound to ask for "burbujas" (bubbles), which she finds absolutely thriling. The "M" sound has been most consistent when she tries to say, "Te AMO!" back to me.
Sandra's attempts to communicate vocally have increased in frequency, as well. It's often difficult to tease out whether or not she's just vocalizing or making certain sounds to communicate a specific thought, but there are several things I've seen her do consistently over the course of several days:
1. When I go to her crib and take the side down to "free" her, if it is the first time she has seen me that day, she grins, giggles, and says "Aaaooh!"I give her kisses (through the mask, of course), tickle her, and say "Te amo, chiquita!" to which she replies again, "Aaaooh!"
2. I often lay her down in her crib or on the mat and cover her face with mask-kisses and say in a silly voice, "Besitos besitos besitos besitoooos!" (kisses). When I do this, she opens her mouth and turns to me to give kisses back, and when I lean back away, she gets excited and begins to put her lips together and try to make a "B" sound. She's still getting a hang of this one, so it usually ends up sounding like an incredibly soft "P."
3. When I mention eating, or read her a book that involves any character that eats, I make the "um-yum-yum-yum-yum" sound. She begins to bring her lips together and tries to make a sound. It ends up sounding like a soft "V," but again- it's a great start and a great effort on her part!
4. Sometimes between exercises or activities I give her kisses (I give this kid a LOT of kisses, I know!) and say "Te ahhhmmmmo!" and really enunciate and drag out the "M"sound. After I do this a few times, she begins to try the "M" sound as well.
5. If I say to her, "Sandrita, hablame!" (Sandra, talk to me!), she DOES. She opens her little mouth and vocalizes. Usually it's "Aaaooh" and a big grin and giggle.
6. She is now answering "yes" in her own way by responding to my questions with a vocalization. For example, when I ask her, "Quieres cantar?" (Want to sing?) she vocalizes back to me and smiles to initiate it.
7. When blowing bubbles, she REALLY tried for that "B" sound- and came close a few times. It takes her a bit to get her mouth closed, but that soft "B" is emerging!
Needless to say, this makes our time together even MORE fun. We work hard, we play hard, and she is really beginning to engage more actively now. So many kids with significant physical disabilities can fall into that hanging-in-the-background category. Kids for whom everything is a challenge can be very difficult to motivate, because any participation is hard. Especially for a little girl in the environment that she's in, the more actively she can engage with the people caring for her, the better- the squeaky wheels get the grease!
Sandra also did a lot of nice reaching today. She reached up to put her hands in my hands while lying on her back to make me "dance" her arms around to the music that was playing. As with everything, she needed a lot of time to get those little arms out, up, and to the middle to put them in mine- but she did it (at least five times)! I moved my hands around (both together, to really test those skills of hers) and while she had the expected difficulty reaching across the middle, she was really trying.
I also had a nice moment with Esvin- he actually played with a toy with me for about a minute. I had propped him up in the corner of his crib so that he could sit and let gravity stretch those very tight inner thigh muscles of his, and put a noise-making toy on his lap. I took his hand and played with the toy for a bit, talking and singing to him. When I took my hand away, he looked at the toy, looked back to me, and continued moving the lever up and down to make the sound. It sort of fell apart when I tried to put both his hands on the toy to play (using those two hands together is not his favorite pasttime) but I was thrilled to have had the few moments of real engagement.
I've continued working on the script for and am working on a short flowchart for the staff and volunteers at Casa Jackson to help them understand what sorts of activities to do with kids based on their current skill level (can they hold their head up, roll over, sit up, etc). It's a bit tricky, but I think it'll be a helpful tool when it's completed. Fingers crossed!
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