Overall, a great week

First of all, my apologies for being slow on the updates this week. Since starting a new job a couple of weeks ago, my time with Charb has been limited except for on the weekends, so here’s an update about the major events of this week:

Exercise:
Charbel’s right side is continuing to get stronger and more coordinated and he is able to use his hand for actions such as feeding himself with a spoon, holding a cup, holding a pencil and scratching his nose, ears, eyes, head etc. (which he does a lot of). Unfortunately, the left side is still really slow compared to the right, with the left hand showing more signs of movement than the left leg. For example, Charbel can bend his right leg at the knee and kick his foot forward, but with the left leg, he can hardly move his foot off the foot rest. We are working with him constantly to use his left hand/arm more as well as to gain enough strength to pick up his foot/leg. Robert brought him a small bicycle that he uses to strengthen both his arms and legs (video on this in the photo album in January photos)

Also this week, Charb’s neck strength has improved dramatically, and he is able to hold his head up and move it around from side to side with more ease. This being said, he still has a pull to the right, and we have to constantly remind him to keep his head up and to the left. Today mom and dad sat him up on the edge of the tilt table and he was able to lift his head up and hold it for several seconds. More exercises for core strength are integral for beginning to sit in regular chairs and beginning to walk - lifting and holding his head up are the first steps in the long process of being able to walk and sit independently.

Eating:
In my last update I mentioned that Charbel is keen on feeding himself. Well this week, his appetite is back with a vengeance and he constantly tells us, “I’m hungry, give me more food.” Charb has been eating the usual ice cream (which he loves) and pudding, as well as some food that mom puts in the blender to feed him (such as meat, potatoes and vegetables). What he used to eat in one or two bites now takes him an hour to eat, but he really loves the taste and the novelty of eating again. Yesterday, after his third serving of ice cream, he said to me: “Rachel, I want a lot more food” and I said, “OK, when mom comes back” Charb said: “I want more food now, hurry up!” I had a really good laugh about that! Today I fed him a tiny piece of pancake mashed up with syrup – he loved it, he said, “This is awesome!” That one piece took about a half hour to eat, so it takes a lot of patience, and he’s never satisfied, he always wants more!

Vision:
Charbel’s vision seems to be improving but he still has difficulty moving his eyes to follow objects. For example, he cannot track objects with his eyes, instead he moves his whole head toward an object. If we tell him to move his eyes left or right, he moves his head and his eyes stay stationary. But, we know that Charbel can see, because we have tested him by holding up fingers and he tells us how many we are hold up. Or, for example, mom does something with her mouth or tongue and tells Charb to copy her, and he can do it. The extent of his ability to see clearly, or see colours is still very questionable, as is his ability to see numbers and letters. We are hoping that we will be able to have tests done on his vision in order to asses how much he can see.

Memory:
Charb’s memory of the past is pretty amazing. For example, we have been singing with him the lyrics of some of our favorite childhood songs and he remembers almost all the words! Also, the other day, I was asking him questions about exercising, for example, I would say, “What exercise should I do if I want to work out my biceps” and Charb would say, “Bicep curls” then I’d say, “Abs” and he’d say “Sit-ups.” It’s pretty amazing how much he remembers, we quizzed him about everything from wrestling, to animals, to world capitals, and his responses were 95% correct (100% correct on questions related to sports – go figure).

Today was a really good day for Charb. He was extra talkative and loving, I can’t even remember how many times he told everyone that he loved them today. He was super happy and used the word ‘awesome’ about 100 times. Today he also discovered his laugh! Chantal said something funny and we were all laughing and then Charb opened his mouth, showed us a huge smile and started laughing – it sounded hilarious – so of course we all started laughing harder, which made him laugh more.

It’s the best thing in the world to know that Charbel’s sense of humor is still intact. He was also very interactive today, listening intently and asking questions and making comments when appropriate. Unfortunately, he is getting a little lazy when talking, so it is sometimes difficult to understand what he is saying. Usually, we have to remind him to speak slowly, one word at a time, and then it is easier to know what he says. Otherwise, he keeps repeating it until we understand. Hopefully his speech will become clearer as time goes on and he regains full motor control over his mouth and tongue.

New pictures and videos will be posted by morning so check the photo album for updates!