Each day is a bonus

Last Friday Richard stayed home from school as he was running a fever. We thought it was due to some mild virus. At noon, he started trying to regurgitate/ vomit but nothing came out from his mouth. Colour drained from his face, he floated in and out of consciousness. We quickly removed the ABR strap which was strapped around his abdomen and rushed him to hospital. On the way there, in the car, he regained consciousness and passed motion. He seemed to be feeling better although he was still unwell. Debating whether to head to A+E or home, we decided to return home.
We fed him a little food but he wasn't in the mood to eat and as his swallowing isn't strong, we let him drink milk in place of his usual pureed meal so that he could take in some panadol.
Our care-giver administered reflexology throughout the afternoon til warmth in his feet came back and his colour improved.
Dinner time came and we fed him his pureed food but he couldn't hold it down and vomitted the whole lot. Again, we decided to rush him to A+E as he wasn't breathing well. And again in the car, on the way there, he opened his eyes and seemed to feel better. That was already ~8pm and once again we headed home.
This episode just brings back memories of how we lived on the edge not too long ago, always watching him 24/7, checking if he was still breathing...we are reminded that Richard's still so fragile. We sometimes forget that he's very vulnerable and frail eventhough he's progressed and healed so much these past 6 years.
Every 'episode' that we encounter where he struggles for life, reminds us that each day Richard is here with us, is indeed a bonus. We learn to appreciate and cherish the extra time given.

School assessment

My gosh! Time seems to fly past so very quickly. It's coming to the end of another school term by the end of May. Tomorrow is the bi-ennial case conference in school ie parent/ teachers meeting with all Richard's therapists (PT,OT, music)and teachers.
They are a wonderful dedicated bunch with so much love for these brain injured children.
Well I think Richard continues to improve ...in cognition, his responses are faster (via eye gaze). Let's hear what the teachers' assessments will be...

Communication

Sometimes one wonders how much these brain injured children understand of the world... of course, their world is a very 'closed' one, as in Richard's case, it is his family, home and school. He hardly ventures out as Mum is 'too busy' to bring him out to 'the world'.

But though he doesn't gesticulate, speak, sit, or walk, I believe he understands to a large extent the dialogue and the nuances of conversation that he hears around him. He actually follows TV programmes he watches and he seems to enjoy Sponge Box Bob.

His eye and sound communication isn't very clear...only those close to him understand what he is trying to communicate. His clearest comminication is to turn his head away to reject something he doesn't want/ like. In school he uses the 'communication board' which he 'looks at' to choose the activity he wants eg he will choose between 'stop' or 'more' when the teacher asks him if he'd like to continue with an activity.

When he doesn't like an activity, he will just close his eyes and last week when he closed his eyes 3 times when the teacher approached him and called his name, then he'd open them again when she walked away, it became very clear to her that he wasn't interested in the activity. So she had a 'talk' with him and told him that he had to pay attention as he was in school. After the 'pep talk', surprisingly, he kept his eyes open and paid attention throughout the rest of the lesson.

So to a ceratin extent, he does understand but the challenge is to get him to communicate his understanding, his wants and needs to us caregivers....
Of course when he smiles, he is happy and his smile always brightens up our day!

Neck Control

This photo was taken a year ago. Richard's neck control has improved since then and he's lifting and holding his head much higher and for a longer period. Will take a photo soon so we can compare see the improvement....Thanks to ABR!

Physical Excercises

Somehow Richard seems to be getting physically stronger. It's especially prominent when he's doing his 4- point kneeling on the floor. He takes a while to 'gather and summon' all his might in order to lift his head from a flopping position. His neck, head, shoulders and back muscles have strengthened. We think this is attributed to the daily ABR and physical therapy excercises which we do diligently at home. Whatever 'therapy' we learn from Rainbow School for the special needs children, we follow up and modify it for Richard and do them at home.
I think that we have to increase the intensity of the PT exercises so that his 'stamina' can be improved. Our aim is to get him to be able to sit without support...soon!

FLASH CARDS

Some how I know that the process of flashing 'flash cards' actually DO work as I've seen children from the Glen Doman programme benefit from it but I'm always wondering if Richard is getting any benefit from it. I'm not very diligent ie don't do it everyday so not totally commited to the process! I think that makes a big difference. I don't want to stop but on the other hand don't do it 'properly'...
Friends from GEMs have been a great help in loaning the cards to us so that saves a huge amount of time preparing them.
So @ the back of my mind I do know it works and I shouldn't waste precious time by not flashing them everyday...

Crying in Sleep

Last night was the first time Marita heard Richard cry in his 'voice before his brain injury'. He was in deep sleep. He usually sort of whimpers during deep sleep but last night was different. His 'real' voice seems to be emerging.Once in a blue moon we hear him 'say' something then he stops and the sound doesn't come out again. When he's excited and happy he just lets loose but when we get all excited about his 'voice', then he gets self conscious and sort of clams up again.
Is it true the voice emerges after he is able to walk? When the motor function in the brain connects?