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?

Enjoy TIME

Richard's much better this week. The lung infection's clearing and he's back @ school...Rainbow Centre.
Marita found a new game which he loves playing...Hide n Seek! No, no, he can't run around 'seekin' or 'hiding' but he looks and searches with his eyes and when he finally 'finds' the person who is 'hiding' his face lights up and he smiles such a beautiful smile of satisfaction acknowledging accomplishment!
His cognition is much better.
We need to find more time to just play with him. It's such a pity he has 4 siblings and parents who seem to be 'just too busy with their own more important work'!!!
Time is Precious, we should enjoy it more.

Getting back to normal

So Richard didn't get the chicken pox full blown, only slight fever for about a week. The high fever which he subsequently got for 3 days was probably due to food getting into his lungs as he was 'phlegmy'and had difficulty feeding. So he missed school for a week and with the 1 week March hols he was away from school for 2 weeks. Also refrained from Acupuncture the past 2 weeks. We'll resume next week.ABR goes on as usual!

Jaime's blood tests were normal. The doctor thought she ought to take the blood tests because it was rare to have a 14 yr old suffer from shingles. Her immunity was very low as a HIV person or cancer patient! Last night again she had difficulty breathing coz of her food allergy. She's got serious allergic rhinitis...to dust, mites, nuts, pepper, ...think she ate potato chips last night!!!

Will update on Daphne and Carrie's A level results and university applications... soon...stay tuned!

Chicken Pox New Year

So Jaime, Richard's 14 yr old sister, came down with shingles over the Lunar New Year 2 weeks and had to be hospitalised after 3 visits to the A+E because the doctors couldn't figure out the diagnosis. After a night in the isolation ward, the doctors agreed to discharge her but only after her younger sister, Audrey 10yr old, and brother, Richard 8 yr old, was vaccinated with the Chicken Pox vaccine. So that Fri 19/2 we had to quickly get the vaccinations done before Jaime could be discharged.
Well I thought that the idea of the vaccinations were to reduce the effects of Chicken Pox if they were to succumb to it but low and behold, Audrey came down with full blown chicken pox the following week with vestibules all over her body. The poor girl was so disappointed in having to miss her P5 school camp! Jaime had already missed her school trip to Cambodia the week before and that was devastating!

We were worried about Richard as he was feverish the whole week after the vaccination. He seemed alright a week later when fever disappeared. But... the fever somehow recurred last week end... high fever with chills. Today, 3 Days on, the fever seems to have subsided.

A Tiger Year Start

The Lunar New Year was a rough start for us as Jaime (14 yrs), Audrey (10 yrs) and Richard ( 8 Yrs) were unwell.
By New Year's eve, Jaime's left thigh was already in severe pain. We thought that she had played too much tennis and pulled a muscle. By New Year's day she was limping so badly and by the 2nd day she could hardly walk. So with all clinics closed on the public holiday, we went to the Accident and Emergency at the National University hospital. The doctor there took an X ray but said he couldn't detect any thing wrong - the X ray looked normal. So we were sent home with pain killers - Brufen. We pointed out the few patches of red on the knee area.
The pain killers eased the pain for 2 hours after it was consumed but the severe pain left Jaime unable to walk and sleep. I called the A + E department again the following day to ask if the doctor could take a blood test...
No, I didnt have medical training but other possibilities did cross my mind...such as Dengue, Chicken pox, measles... ( there was some red patches around the left knee where the pain was originating and which ran up the back thigh to the back of her left bum. So we went back to A + E ( it was still a public holiday being the 3rd day of New Year) and the doctors took a blood test and 3 doctors 'looked' her through. We were sent home without any further treatment. By Wednesday, there were more patches of rash on her thigh, back and a fwe sots on her neck and fore head. I called the hospital and spoke to the senior docotr @ A+E at that time and he suggested that I go to the Specialist clinic 'A' to see the specialist there.
So on Thursday ( 5th day of New Year) we went to the specialist clinic A. But we were told there was no doctor to see us as the referral letter given to us was to see an Orthopedic specialist. So we were directed back to the A+E Department.
At the A+E, the doctors told us that Jaime had to be warded as they wanted to do an MRI and ultrasound. So she was warded that morning as she had just developed a fever hat morning. As NUH is a teaching hospital, a group of doctors came to see her @ Ward 47 which is a general pediatric ward. They quickly came to the diagnosis that it was shingles...

She was quickly transferred to the Isolation Ward!

After 2 n half weeks of not doing the ABR MANUAL excercises, Richard's joints seemed stiff. Although the machine was used regularly ~ 12 - 15 hours/ day it wasn't enough to 'stimulate' the whole body and loosen up the joints.
Applying the manual excercises takes time and patience, (besides skill), which none of us have at home except for Marita! So when she went on Home leave, we didnt do any of it!
Richard is just so happy to have Marita back! Well, so are we!!
His ankle bones were sticking out of/ protruding out of the skin creating open wounds...in just 3 weeks of lack of massage and movement. It was a sorry sight!Marita came back rather shocked to see this deterioration and thought of wrapping his ankles in a plastic bag before we bathe him so that the ankles would not get wet. Lo n behold! that worked! By keeping the ankles dry, his ankle wounds are closing up fast! What an ingenious simple and practical solution!
No swimming in school then til the ankles are completely healed.

New School Year

It was great to return to school this week after 7 weeks of holiday.
The holidays were spent very much at home doing therapy and watching TV. Everybody else was running around busy with exams and then preparing for the festive celebrations...so it's great to be back at school. At least that's an 'outing' for Richard 3 times a week with Physiotherapy, Occupational therapy, feeding group, music therapy and just being with friends. A new teacher and 3 new friends in class with 3 'old' friends from last year.

caregiver on home leave

Richard's caregiver is on home leave so we haven't had time to do the manual ABR application. Thank goodness for the machine... yes we use that more frequently during the day and definitely throughout the night. In total it's on for about 13 - 15 hours a day. He's comfortable using the machine and sleeps well with it.
School starts tomorrow and we'll be assigned a new teacher. We've had wonderful teachers throughout our 3 1/2 years in school.