Casa Jackson: Round Two!

The six scant hours of sleep I had Tuesday night left me tired Wednesday morning, but not tired enough to delay my return to Casa Jackson. I had determined that I was going to be there Wednesday morning at 8:30am, and be there I was. I had spoken with Andrea, the Casa Jackson volunteer coordinator, who had informed me that while Gricelda had gone home, Magaly and Sandra remained, and a number of other children with significant special needs had come to join them. My 'caseload' would be significantly larger this time around, and I was terribly excited to meet the little faces I would be working with and for.

And yes, I was absolutely ecstatic to see my little Sandra again. When I arrived at Casa Jackson, I made a beeline for her crib. With my completely different (now blonde) hair, I was worried she may not recognize me. 

I stood over her crib and watched her wake up, her little arms and legs stiffening in a stretch and her eyes fluttering. I dropped the side of the crib and put my hand on her cheek. She gave me a sleepy smile. I began to speak to her. "Hola, mama. Sandrita, mi chica linda, mi chiquita bonita, mi amor, que paso mami?" Her smile began to widen and I pulled my mask down from my face. "Sandrita, es mio. Yo regresaba para ti. Te amo, mi chiquita. Te amo!" (For you non-Spanish speakers, loosely translated: "Hi Sandra, my pretty girl, my little cutie, my love, what's up?.. Sandra, it's me. I came back to see you. I love you, my little one. I love you!")

I can't guarantee that Sandra was not just excited to be woken up by a friendly volunteer; that she wasn't just being her usual, happy self. But I don't believe that was the case. As I spoke to her and pulled the mask down, she erupted into giggles, grinned, and cooed several times, "aaahhhoooo" (the sound she used to imitate my "te amo"s with in January). I picked her up from her crib and she snuggled right into me (cue Peaches and Herb "Reunited").

We had a wonderful morning. Sandra has gotten stronger! Her head control is still pretty poor, but she has made definite progress. In January, she was unable to hold her head up for more than 10 to 15 seconds at a time consistently. Now, when placed on her tummy with a blanket rolled up beneath her arms to help her prop on her forearms, she holds her head up and looks around for over a minute, consistently, before dropping it back down. She is reaching with her arms and hands more often and with slightly more control, and needs a little less support to sit up. She even pushed up on long arms once! For the non-therapist crowd, that means that she pushed herself up off of the floor by extending her elbows. This may not seem like a huge step, but it is very hard work for a little girl with such significant physical impairments. 

This progress has been made possible by the wonderful Rafa, the male nurse from Spain who has been volunteering at Casa Jackson since December and will continue through to October. During my stint in January, Rafa was very interested in everything I was doing, and eager to learn what he could do to help Sandra continue making the gains he was seeing us accomplish together. Rafa is a great advocate for the children at Casa Jackson. He is a native Spanish speaker, he's male, he's older, and he's a nurse. This combination of attributes seems to garner him a bit more respect from the local nurses, who are mostly young and female. Rafa is also a wonderful intermediary and advocate for me and my efforts there, and is incredibly gracious and vocal in his support of my suggestions.  

Rafa reports that he has been getting Sandra out of her crib everyday and placing her on her tummy on the mat in the central playroom. Sandra enjoys being "part of the action." She is able to pick her head up, look around, and watch the nurses come and go with bottles and diapers and laundry; she is able to see her other little friends coming and going in the nurses arms and 'talk' to the children sitting on the mat alongside her. This is a perfect example of the tiny change that makes a huge difference. By changing the position and environment that Sandra is left in for an hour every day, and making it a part of her daily routine, she is deriving massive benefits. Her extensor muscles, initially so weak from laying flat on her back for hours each day, are growing stronger and stronger. She is in a more stimulating environment. She is hearing more, seeing more, interacting more. When she holds her head upright, she is developing the muscles in her eyes in a different way than when she lays on her back. For the benefit to visual-motor development alone, altering her position is invaluable. The bottom line is this: a small change has been made to Sandra's daily routine, and it is yielding a great benefit.

In addition to Sandra, there is a sweet eleven year old boy named Esvin, who is very funky. Seems a bit PDD-ish, but globally delayed. Incredibly sweet and snuggly, regardless. There is little Mayra, who is seven months old and spends her day alternating between seizures (she has infantile spasms) and sleep. She is incredibly rigid for most of the day due to the extensor tone that occurs with her seizures. There is Alison, who is stick-thin and incredibly weak. In fact, there seem to be a lot of slightly older (12-18 months) babies who are shockingly thin. Folds of skin hang off of their little bottoms and upper thighs where their baby fat ought to be. Their heads look massive, their eyes bulge, and they are impossibly frail. Several of them appear near death. The top priority is to get them fed and healthy again, but when they are ready, they will also need a lot of help to gain strength to move. These are little children who can barely lift their arm up from the mattress because they are so weak.

The twins are bigger and healthier, although one of them has taken to holding her breath until she turns black and passes out. However, there is good news- her mother actually survived the ordeal of childbirth. When their grandfather brought them here, he was sure she was dying. They could not afford a doctor, and she was barely hanging on. She is healthier now and comes from eight hours away to visit her babies, who she will bring home when they are ready. I am sure the family that was slated to adopt them is sad, but it is a beautiful thing to know that these babies we thought had lost their mother will be able to grow up in her care.

Thursday I sat out due to a horrible cold that had been brewing since take-off in Boston, and Friday was unfortunately filled with vomit, diarrhea, and a whole lot of crying. There was a shortage of volunteers and unfortunately, very little happened beyond triaging the babies' immediate needs (bottles, diapers, etc). Little Sandra was the first to fall ill. All over my shirt, pants, and sandaled feet. I spent the morning holding her and comforting her. She arched her back every five minutes or so and cried out in pain. Whenever I spoke to her, she replied with a cry. I could have killed the nurse that kept trying to shove the bottle in her mouth all morning long; each time it touched Sandra's lips, she gagged and wretched. Eventually I convinced her that it was fruitless and the effort was abandoned. The afternoon was spent running from baby to baby with the one other volunteer, who was a physical therapist from England who had some very interesting stories from traveling in Syria, Lebanon, and Libya.

The planning has gotten underway, although it's a challenge still! I am beginning to think that the only way to really formulate a definite plan is to just make the move down here. There are so many directions to go in; between Casa Jackson, and the new possibilities that may be opening up at the school for children with disabilities nearby, Hermano San Pedro, there are even more opportunities to develop a real special needs program down here.

Off to Casa Jackson for the afternoon... More on those opportunities after I finish the day's baby snuggling and therapizing!