Routine

Wow, it has been way too long since I last updated. Our lives have settled in to a routine now, albeit a very hectic one. Charbel continues to progress, but much more slowly than the rapid improvements of late December. In his own words, “I’m stronger.”

I thought that many of you would be interested to know what kinds of things we are working on with Charbel at the moment, and what a typical day for him looks like. We hope this blog is reaching other families in similar situations, and hopefully we can give them some insight into what has worked in our case.

Charb’s Typical Week

Charbel comes home everyday from 12-6pm on the weekdays and stays home all day/night on Friday, Saturday and Sunday.

1 hour of daily physiotherapy at the hospital in the mornings (Monday – Friday)
- working on rolling in bed (which he can do from the right side to the left side)
- sitting up on the edge of the bed (he can hold himself unsupported for a few seconds)
- range of motion exercises

Afternoons at home:

1-2 hours of aggressive physical rehab with Robert and dad
- starts off by stretching the major muscles
- sitting on the edge of the massage table / or getting up on the tilt table
- working on upper body strength by using the hand bicycle
- using major muscles by lifting, kicking, flexing and pointing arms, legs, and feet
- working with the left side of his body to balance with the right (asking him to move the left hand, foot, knee and ankle) – we have seen significant improvement on the left side of his body this past two weeks!
- working on neck control and movement (Charbel leans his head toward the right and down, and we are constantly telling him to put his up and to the center) – small improvements this week on his neck control

3 times per week
- 1 hour massage for neck, shoulders, and ankles and knees (Charb enjoys this greatly and is always very relaxed after the massage)

1-2 hours of speech/memory and visual stimulation (we don’t do all of these every day, but we try to focus on a couple of different ‘games’)
- giving Charbel words to make into sentences
- asking Charbel to pronounce certain letters/sounds clearly (repeating several times)
- asking questions about the past to work on long term memory
- playing guessing games: giving Charbel everyday objects that he must tell us what they are, asking him trivia questions about sports, world capitals, math, and general knowledge to work on memory/recognition
-writing words and sentences on the white board
- moving his tongue around and his lips
-looking at pictures and letters to see if he can recognize the objects and words (so far his vision is still quite impaired and he cannot recognize small letters or pictures)
-asking Charbel to move his eyes and track objects (up until Charbel cannot move his eyes. To follow an object, he must move his entire head)

Areas that need more work:
-Speech: Charbel’s pronunciation has not improved much since he first started talking. We are finding it difficult to understand him because he does not move his lips and it is becoming frustrating for all of us.
-Shot-term memory: it has become evident that Charbel has difficulties recalling information from his working and short term memory. We would like to work on this, but we don’t have many techniques in this area (if anyone has any suggestions, please email omelia@ns.sympatico.ca)
-Vision: we need to get to the point where Charbel can move his eyes and not only his head to track objects. We also need further diagnosis about his vision, which he admits is blurry.

Eating:
-Charbel is ALWAYS hungry and thirsty, and he never fails to let us know!
- Charbie signals to us with his hand when he is thirsty, he has made up a cute signal that he uses often
- Charbel has progressed from eating very mushy foods, to slightly more solid foods that are blended but not liquid.
- Charbel is now drinking on his own with or without a straw and he can also feed himself but he tends to eat VERY quickly so we have to watch him closely!

These are some of the activities that make up Charbel’s day. Keep in mind, that other than Robert, we have no help on a daily basis when Charbel is at home. Mom is responsible for all of the daily grooming and care that goes into keeping Charbel clean and healthy. Dad and Robert work Charbel physically and challenge him on a daily basis to keep on improving. Chantal and I work on Charbel’s speech, vision and memory when we get home from school/work and on the weekends. In the down time (which is rare), Charbel watches movies or hangs out with us at the store and is quite happy to see familiar customers and friends.

We are all very much involved with Charbel’s rehab process, but it is too much for a family to do alone, and without professional guidance. During this integral phase of cognitive and physical rehabilitation, we have come to see some of our limitations, and we are hoping that by going to the NS Rehabilitation Center next month, Charbel will receive extensive treatment.