We kept Gili home yesterday to rest. The previous day she had a terrible spell of throwing up and we almost went to the hospital due to dehydration. She was thrilled to be back at school today. She was excited in the cab and was just glowing to see her teacher and helper. Adina was kissing her and Gili was laughing and so happy.
This morning we met with Gili’s teacher, three therapists, and the therapy coordinator. The overall consensus was that they like working with Gili very much and they all seem optimistic about her being able to reach the goals they have set. Her teacher, Adina, said she would translate the report for me, but for now I will try to remember as much as I can.
One exciting thing for me, was hearing that Gili clearly likes being with people she knows. She shows preferences for people and activities, and smiles, laughs, and cries appropriately. Before today I thought that she was pretty happy to go to anyone who held her securely, and that she would smile or laugh at almost anything. I don’t want it seem like I want to be upset, but it is very comforting to know she cares about what is going on and who she is with.
Adina works with her vision, eating, and is generally in charge of her daily care. We agreed that Gili is making progress with her looking and eye contact. The teachers also noticed her “nystagmus” (jiggling eyes), and now I know what it’s called! The coordinator said they would give me a letter for before she sees the eye doctor next time so they will have to pay attention and answer questions. Adina said that Gili does much better in the dark room when they have a light focused on only one thing. They said that her eyes seem to be okay but that there is a problem with the connections in the brain. Maybe in a regular lit room there is too much stimulus, but in the dark room she can focus. I have noticed in the past that she enjoys being in the dark, whether it’s alone in her crib talking to herself, listening to Dad play guitar, or on the floor in the dim living room while I go on my computer. It made me think that maybe we should try feeding her in the dark with just a dim light on the food.
|Gili working with Lehey|
Lehey (I don’t know how to spell it, pronounced Lee-hee) is her communications/speech therapist. They seem very happy with her progress using a voice output communication aid (VOCA). Lehey will record herself saying something and then Gili pushes the button at the appropriate time. They assured me that she’s not just pushing it randomly; she’s doing it appropriately in response to the game Lehey plays with her. They also practice taking turns vocalizing, like a conversation. She is working on a hand motion for “I want” and nodding for “yes” and “no”. Lehey talked about the importance of exaggerating and describing Gili’s wants through the day, like “yes, you want the bottle,” and helping her nod her head. I went into the meeting thinking Gili had no communication skills at all, but I was impressed by Lehey’s optimism. She seems genuinely excited about working with my daughter.
Rotem is her occupational therapist. They work on playing appropriately with toys and exploring objects in an appropriate way (with her hands and eyes, not mouth.) Before today, I was so happy that she was finally able to hold things with both hand and bring them to her mouth, I didn’t really think about her playing with things. They play ball or work with several similar objects like blocks. I think I should try challenging and engaging her more at home, rather than just give her something to chew, let her roll around, and message and stretch her limbs.
We also discussed her eating. In the last few weeks she has made progress with simply not rejecting food. Before that she didn’t even like seeing her food tray and would pull away when she saw the spoon coming. Now she will actually eat and keep down a few spoonfuls of solid or semi-solid food. She will also bring small bits of fruit or vegetables to her mouth herself.
Yael is her physical therapist. They meet at least twice a week. She is making progress in sitting unassisted for well over a minute and sitting well with minimal assistance. The next goal for her is to get herself from a lying to sitting position and to sit well enough to play with something with one hand. Wouldn’t I love to see that! I think they mentioned possible balance issues, but mainly weak muscle tone in her trunk.
We are also borrowing a baby walker for our home. When she grows out of it we can talk about applying for a more serious walker/gait trainer. Last night, I was watching videos on YouTube of kids using different kinds of walkers. I was getting pretty excited that it looked like something Gili could use, but Yael thinks she has the capacity to walk unassisted!
My overall impression was more optimistic about her progress. I am constantly impressed by the love, care, and attention she gets at the school. My husband is finally starting to get that she is not going to recover and turn into a normal kid. He told me that he just realized that Gili really is special and will probably always be in a special class. He thought her vision was fine, so the teachers saying that they felt that there was a problem with the connections in her brain made an impression on him. He said that he didn’t realize the extent of her neurological problems. He also paid particular attention to her eating issues. They said that it will only get harder to switch her from the bottle as she gets older. They talked about giving her fewer bottles so she would be hungrier for solids
I was invited to music therapy and to see her work in the dark room next week, and to sit in on an occupational therapy session on may 16. I am anxious to discuss her new developments with the Neurologist in about a month and a half. I’m been concerned about some behavior that might be related to a seizure or her yet to be diagnosed cerebral palsy.