Over the last few months, there have been a few readers asking about the Neurosuit. So I thought I'd share some general info about it. I hope it'll be useful.
The suit is yours to keep upon purchase. The suit comes in various sizes. My son is wearing the smallest size now. We bought it when he was 3 and a half years old. The oldest person whom I know who bought the suit is 20+ years old.
The suit consists of various separate pieces - vest for the upper body; a pair of shorts; two arm bands; two leg bands; a cap (I think for those with poor head control). You can't buy the pieces separately. It comes in a set. There are also lots of bungee cords and small hooks to attach the cords to be suit.
The suit is designed such that it is "expandable" to grow with the child for a few years. A sneaker or sports shoe, has lace on the front to accomodate slightly different sized feet. So too, the suit has lace parts on various parts to accomodate for a growing child. There's lace on the front chest and back of the chest, on the left and right side of the shorts. There are also velcro straps, to accomodate a growing child. Those straps are on the vest, arm and leg bands.
You will have to pay for an assessment and training from the therapist. The therapist will ask you the child's history, and see what is his/her area of need. The therapist will decide on how to hook up the bungee cords according to the child's needs. The therapist will train the caregiver on how to prepare the child's body before putting on the suit. That simply means doing a series of reflex patterning movements or massages. The therapist will work with the child, the way a physiotherapist would, except that the child is wearing the suit. It's good to book a few sessions because there is much to learn and much to ask. The therapist will also come up with a home programme for the caregiver to do with the child. Home programme means homework, exercises you do with the child in the suit when at home/at the park etc.
You could also bring the child in the suit to the therapist for a series of intensive sessions. My son just completed a series of 5 consecutive days of 2 hourly sessions, earlier in Dec.
It's also important to check back with the therapist on a regular basis (3mths/6mths depending), because as the child grows and improves, the hook ups may need to be changed.
I believe the suit works because the cords help to align the body correctly, which then helps the child to use the right muscles. The cords also provide resistance to build up muscle strength - think resistance training for an athelete. Importantly too, the suit itself provides proprioceptive input to the brain which I think is lacking in conventional physiotherapies.
To see results, it's best to use the neurosuit as frequently as possible. As with CP kids in general, it's important to achieve the right frequency, intensity and duration, to bring about progress. In the earlier days after purchasing the suit, my son exercised in the suit almost everyday, twice a day, usually at the park. We chose the park because there's equipment there that I don't have at home.
For more details about the suit, you may contact the therapist directly. His name is Adnan and is contactable via email on: adnanasgerali@yahoo.com.
Thursday, December 30, 2010
Tuesday, December 28, 2010
Hyperbaric Oxygen - resumption of sessions
We resumed his Hyperbaric Oxygen Therapy sessions about a week and a half ago. He still has quite a few sessions to go and it's likely to run into the first few weeks of Jan.
I had originally intended to complete it by early Dec, but was delayed because of his on and off cold. Then I had planned for him to have two sessions in a day, in order to complete it before school reopens. However, I decided to make it just once a day because it was tiring for both of us. That allowed him time for other morning activities like playdates, Gymboree sessions or just messing about at home.
One thing I learnt which I wish to share is that if the latex neck seal is slightly big for your child, place a handkerchief between the seal and the child's neck. That will prevent too much oxygen from leaking out. Thanks for the tip Fe! It saved my arms from being sore as I used to fold and hold the excess latex to make a tighter seal, for an entire hour.
I pray that the remaining sessions bring about further positive changes, especially in clarity of speech, quickening of his reflexes, reduction in spasticity, and improvements in maturity.
I had originally intended to complete it by early Dec, but was delayed because of his on and off cold. Then I had planned for him to have two sessions in a day, in order to complete it before school reopens. However, I decided to make it just once a day because it was tiring for both of us. That allowed him time for other morning activities like playdates, Gymboree sessions or just messing about at home.
One thing I learnt which I wish to share is that if the latex neck seal is slightly big for your child, place a handkerchief between the seal and the child's neck. That will prevent too much oxygen from leaking out. Thanks for the tip Fe! It saved my arms from being sore as I used to fold and hold the excess latex to make a tighter seal, for an entire hour.
I pray that the remaining sessions bring about further positive changes, especially in clarity of speech, quickening of his reflexes, reduction in spasticity, and improvements in maturity.
Monday, December 27, 2010
I've not been sleeping well
It's 3am. I've been unable to sleep for at least the last hour. This is becoming an unwelcomed regular occurence. I decided to try my luck with the internet connection (I'm in luck!), so here I am, blogging.
I am tired, mentally and physically, but felt the need to blog. It's been my emotional outlet for destressing, and my way to try to work out what's going on in me. There must be issues bugging me that cause me to wake from sleep at ungodly hours lately.
As the school holidays come to an end, I worry about the new academic year. Will his new teacher be supportive? Will his new classmates be nice to him? Will his teacher be effective in teaching so that my "home teaching" workload is lighter? Have I done enough for him this school holidays?
Lately I have been stressed on the homefront in managing my helper and my learning disabled adult sister. I confess that on many occasions since this helper came to us, I had been so angry with them individually, and together. I do not blame my sister for her actions - she is the way she is because of her limitations and the current circumstances. I do not have the ability to, on a consistent regular basis, give her the attention she craves for or see to beyond her basic needs.
I'm beginning to see that there will always be issues between my sister and who ever becomes my live-in helper. I've not yet come to the stage of being able to do without a live-in helper, and I've yet to learn to manage the dynamics well.
I'm aware that I ought to have been able to deal with the issues in a calm manner. I do worry that my displays of anger is a bad influence on my son. Parents should be good role models. I've stopped shouting and am allowing more slack. I think though that it's ended up being bottled up inside me, which is very unhealthy and dangerous.
I need some "me" time, away from home, away from my son, so that I can breathe. I dont need a holiday from it all and that's just not possible anyway. I need "me" time on a consistent regular basis. It doesn't have to involve a lot of money or a lot of time - I think just having a cup of tea at the mamak is enough. I've hardly had time alone since this helper arrived in March.
There! I've had my say. I feel much better now. There are other issues simmering under the surface, which I cannot write about, and many other frustrations which I will have to deal with. To those reading this post, and who previously thought I'm coping well with everything that's going on, I'm not. Everyone needs help and support, even more so as parents of special needs kids.
Hopefully, my internet connection improves considerably (during normal waking hours!), as blogging seems to have a positive effect on me - both in terms of writing my blog and reading the blogs of others. It's now 4.30am and I'm off to a hopefully peaceful sleep.
I am tired, mentally and physically, but felt the need to blog. It's been my emotional outlet for destressing, and my way to try to work out what's going on in me. There must be issues bugging me that cause me to wake from sleep at ungodly hours lately.
As the school holidays come to an end, I worry about the new academic year. Will his new teacher be supportive? Will his new classmates be nice to him? Will his teacher be effective in teaching so that my "home teaching" workload is lighter? Have I done enough for him this school holidays?
Lately I have been stressed on the homefront in managing my helper and my learning disabled adult sister. I confess that on many occasions since this helper came to us, I had been so angry with them individually, and together. I do not blame my sister for her actions - she is the way she is because of her limitations and the current circumstances. I do not have the ability to, on a consistent regular basis, give her the attention she craves for or see to beyond her basic needs.
I'm beginning to see that there will always be issues between my sister and who ever becomes my live-in helper. I've not yet come to the stage of being able to do without a live-in helper, and I've yet to learn to manage the dynamics well.
I'm aware that I ought to have been able to deal with the issues in a calm manner. I do worry that my displays of anger is a bad influence on my son. Parents should be good role models. I've stopped shouting and am allowing more slack. I think though that it's ended up being bottled up inside me, which is very unhealthy and dangerous.
I need some "me" time, away from home, away from my son, so that I can breathe. I dont need a holiday from it all and that's just not possible anyway. I need "me" time on a consistent regular basis. It doesn't have to involve a lot of money or a lot of time - I think just having a cup of tea at the mamak is enough. I've hardly had time alone since this helper arrived in March.
There! I've had my say. I feel much better now. There are other issues simmering under the surface, which I cannot write about, and many other frustrations which I will have to deal with. To those reading this post, and who previously thought I'm coping well with everything that's going on, I'm not. Everyone needs help and support, even more so as parents of special needs kids.
Hopefully, my internet connection improves considerably (during normal waking hours!), as blogging seems to have a positive effect on me - both in terms of writing my blog and reading the blogs of others. It's now 4.30am and I'm off to a hopefully peaceful sleep.
Sunday, December 26, 2010
Bad internet connection
There are a lot of activities I wish to write about but have been pampered by the really bad internet connection from home, over the past few weeks. Incredibly frustrating!
Most times, I cant even get into the internet. On the very few occasions that I did, the speed was less than100kbps for a split second, then drops to zero. I've only been able to check (from home) my email and my blog for comments on extremely rare occasions - e.g at 5am when I can't sleep.
I had been able to get fast speeds when I access from places outside my home (e.g at the mall while he's at Gymboree, or at the therapist's house, or while waiting at the car workshop), so I managed to search and download more worksheets, and information that I hope will help in developing his maths and other skills.
I had lodged a complain to Maxis, but will take 3 -7 working days for the technical team to investigate. You know what customer service is like in M'sia...so I'm considering switching providers.
Do tell me which mobile internet service provider do you use? Does it provide fast and stable speeds?
Most times, I cant even get into the internet. On the very few occasions that I did, the speed was less than100kbps for a split second, then drops to zero. I've only been able to check (from home) my email and my blog for comments on extremely rare occasions - e.g at 5am when I can't sleep.
I had been able to get fast speeds when I access from places outside my home (e.g at the mall while he's at Gymboree, or at the therapist's house, or while waiting at the car workshop), so I managed to search and download more worksheets, and information that I hope will help in developing his maths and other skills.
I had lodged a complain to Maxis, but will take 3 -7 working days for the technical team to investigate. You know what customer service is like in M'sia...so I'm considering switching providers.
Do tell me which mobile internet service provider do you use? Does it provide fast and stable speeds?
Friday, December 24, 2010
Science activity - sink or float
This was a quick and simple science activity during the holidays. I first saw it on my friend's blog (thanks for the idea Yvonne) many months ago, but never had the time to get round to do it.
I just used objects I found around the house, with a mix of large and small items, those that'll float and those that'll sink.
He loved throwing the stuff in cos it'd make a splash or "kerplunk" sound!
But before throwing it in, I'd ask him to predict whether it'd sink or float, and I'd make a guess too.
I was trying to introduce to him that in science experiments, you'd make a prediction, then test it out, and compare the results.
Most times, he predicted wrongly, which is fine cos it wasn't about getting it right (not at his age anyway), but about taking part in an experiment and what is an experiment all about. Btw, I some of my predictions were wrong too! LOL
I also prepared a chart for him to record the findings. Recording one's findings is also part of an experiment.
But I also realised it was useful to teach him how to use or read a chart. By this I mean reading a row and column in order to find the right place to place the tick mark.
And, no I'm not kiasu on this aspect cos his kindergarten workbook had two pages that needed him to understand how to use a chart. He needs more practice on this as you can see he initially chose the wrong column or row to record the outcomes. But as usual, I've a lot of things for him to learn and right now, this low on my priority list.
I also did this activity to break from the usual activities which are more therapy based and from the lots of craft work we did lately.
But I also realised it was useful to teach him how to use or read a chart. By this I mean reading a row and column in order to find the right place to place the tick mark.
And, no I'm not kiasu on this aspect cos his kindergarten workbook had two pages that needed him to understand how to use a chart. He needs more practice on this as you can see he initially chose the wrong column or row to record the outcomes. But as usual, I've a lot of things for him to learn and right now, this low on my priority list.
I also did this activity to break from the usual activities which are more therapy based and from the lots of craft work we did lately.
Monday, December 20, 2010
Craft activity - corn
I found it on one of the many kids education/activity related websites. I have recently been surfing on many of those websites that I've forgotten where I saw this.
I cut the pieces of paper and he helped to glue them on. He placed glue on the "corn", scooped various types of beans and grains from containers, and scattered them on the corn. Even though each step was assisted, he still did some bits of it himself.
I found it's good for fine motor, sensory, and hand-eye coordination. I did a lot of craft work with him during the school holidays as it's a fun way to get in fine motor practice. He gets to open and close the glue cap, to squeeze the glue bottle, open and close tupperwares containing the craft materials, use both hands together, figure things out himself, etc etc.
There's of course the creative element to it - I've not emphasised creative skills in the past.
He also gets a sense of achievement which I hope will boost his confidence. He was very pleased with this piece of work and showed it off to papa when he came home.
Sunday, December 19, 2010
He attended class without a shadow aide
I’m very late in writing about this but it is an important event that I wish to share.
Back in Oct I had mentioned in my blog that I had floated the idea, to his teacher, of my son attending kindergarten without a shadow aide. Teacher agreed, but for it to happen only after the concert.
So after the concert, I raised it to the teacher again. After a week of nervous waiting, I got the approval from the principal.
On 1st Nov, a week after the concert, my son went to kindergarten without me, without any shadow aide. It was a big milestone – for him and for me!
I was worried for several days prior and didn’t have proper sleep in the run up to the first day. I was worried that something might happen that would lead to him being kicked out or to him disliking school. I was worried how he’d cope with the stress.
His 1st day
My heart sank when we arrived in class on the first day. His teacher was absent and it was the fierce teacher’s aide substituting for the day instead. It wasn’t the best start but if he “survived” the day, I knew that he’d probably be ok the rest of the days.
I was too nervous to be stuck at home while he was in class, so thankfully a friend was free to accompany me to a toy wholesaler in the city. I not only managed to buy the main gift for the party packs for my son’s birthday party in school, but also found a fun (& useful) toy for his birthday.
I spoke to the substitute when I got there early before dismissal. He fed himself his snack and drank his water. He needed help to open his water tumbler and Tupperware. The substitute took him to toilet but he didn’t shee-shee (scared I guess!). He didn’t cry or cause any trouble for the substitute.
The remaining days
There were not many school days from 1 Nov to 19 Nov. Out of those 15 days, there were 2 public holidays, 1 day the school was closed, 1 field trip day, 1 year end party day.
Nonetheless, he successfully attended those school days without me, without any incident. Initially, he was very happy to attend class without me. Teacher said he was happy, smiling, laughing and playing with his friends.
On one day, he was laughing so loudly that the teacher in the class next to his commented that his true self could be seen when I’m not around. I think that was because he and another special kid had completed their work before the rest (with teacher’s assistance) and allowed to play. They started chasing each other and so my son was happy and excited.
There wasn’t much teaching in those last few weeks of school, so I’m not sure how he would have coped during a more “typical school day”. For the teaching that did take place, he was able to follow lessons during workbook time. When it was floor time, he continued to be a bit fidgety and easily distracted, curious what his friends who weren’t paying attention were up to.
After a few days of attending class without me, he started to show some little signs of stress. He would say that he missed me whereas in the initial days, he didn’t. He would hug me very tightly or hold my hand extra tight when I picked him up from school.
Helpful friends
The kids were curious why I didn’t attend class with my son anymore. Teacher explained that my son’s big enough now and almost 5, so doesn’t need mummy anymore : )
I’m thankful that the kids were kind to him. They would help him with this or that. They included him in their play (teacher did tell them to). It looks like his social skill is slowly improving because on one occasion, he played Lego with his best friend and not just alongside or merely observe.
Assistance still needed
He still needs help from his friends or teachers in various small ways. He sometimes needs help to open his water tumbler (esp when my sister closes it super tight to avoid it spilling). He needs help opening and closing his snack box (I’ve since found a container he CAN open by himself – a Lock & Lock brand). Teacher needs to keep a close eye on him when he’s eating as he has a tendency to put more food in his mouth before completely swallowing the previous bite, and thus gag/vomit.
He needed assistance from the teacher when it came to writing practice (several lines). He was distracted during lessons, by the out-of-the-box girl who sat beside him so I guess that’s why teacher had him sit at her table with the other kids who needed more attention during workbook time.
Teacher was very supportive of him in terms of his toileting needs too. She initially walked with him to toilet but peeped from behind the wall. The next time, she had his friends go with him but would check on him a few seconds later. A few times more and teacher didn’t need to check on him in the toilet. But she had to be aware of how long he was in the toilet and if he didn’t return, she’d go and check on him. On occasion his underwear or pants would get twisted and when he returns to class, teacher would notice him tugging and help him adjust.
Next year, 2011
I believe this “without a shadow aide” trial happened mainly because the class teacher was supportive, understood my son’s need, felt confident enough to handle him, and they had completed the syllabus for the year, and it was only for a few weeks.
Teacher mentioned that next year, it’s most likely that I’ll have to be with him for the first few months at least, to help him settle down because he’ll have new classmates, new teacher, new classroom set up etc.
But the fact remains that he did successfully manage to attend class without me, albeit with assistance from teacher and friends. This definitely bodes well for the future.
Extra hours for me
Those few weeks gave me a few precious extra 3 hours in a day. Even though I didn’t get to relax, I did manage to do many errands.
Day 1: bought the main item for the party packs for his school birthday party & his birthday gift.
Day 2: bought remaining items to fill up the party bags.
Day 3: fell sick & slept the morning away!
Day 4: made a lot of phone calls – quotations for my car’s cracked windscreen, fixed 2 doctor’s appointments for myself, fixed appointment with contractor etc. Cleared some paperwork.
Day 5: shopped for Christmas presents and sister’s birthday present.
Day 6: appointment with Gynaecologist.
Day 7: appointment with Hepatologist.
Day 8: errands to the Laundromat, cake shop, flower shop for my sister’s birthday, met up with contractor.
Day 9: drove to workshop to get opinion on cracked windscreen and picked up some groceries.
Day 10: paperwork at home & general tidying up.
Day 11: accompanied son on field trip.
Day 12: picked up his birthday cake and celebrated with him in school & since it was the last day of school, they were dismissed at 11am.
As they say, no rest for the wicked!
Back in Oct I had mentioned in my blog that I had floated the idea, to his teacher, of my son attending kindergarten without a shadow aide. Teacher agreed, but for it to happen only after the concert.
So after the concert, I raised it to the teacher again. After a week of nervous waiting, I got the approval from the principal.
On 1st Nov, a week after the concert, my son went to kindergarten without me, without any shadow aide. It was a big milestone – for him and for me!
I was worried for several days prior and didn’t have proper sleep in the run up to the first day. I was worried that something might happen that would lead to him being kicked out or to him disliking school. I was worried how he’d cope with the stress.
His 1st day
My heart sank when we arrived in class on the first day. His teacher was absent and it was the fierce teacher’s aide substituting for the day instead. It wasn’t the best start but if he “survived” the day, I knew that he’d probably be ok the rest of the days.
I was too nervous to be stuck at home while he was in class, so thankfully a friend was free to accompany me to a toy wholesaler in the city. I not only managed to buy the main gift for the party packs for my son’s birthday party in school, but also found a fun (& useful) toy for his birthday.
I spoke to the substitute when I got there early before dismissal. He fed himself his snack and drank his water. He needed help to open his water tumbler and Tupperware. The substitute took him to toilet but he didn’t shee-shee (scared I guess!). He didn’t cry or cause any trouble for the substitute.
The remaining days
There were not many school days from 1 Nov to 19 Nov. Out of those 15 days, there were 2 public holidays, 1 day the school was closed, 1 field trip day, 1 year end party day.
Nonetheless, he successfully attended those school days without me, without any incident. Initially, he was very happy to attend class without me. Teacher said he was happy, smiling, laughing and playing with his friends.
On one day, he was laughing so loudly that the teacher in the class next to his commented that his true self could be seen when I’m not around. I think that was because he and another special kid had completed their work before the rest (with teacher’s assistance) and allowed to play. They started chasing each other and so my son was happy and excited.
There wasn’t much teaching in those last few weeks of school, so I’m not sure how he would have coped during a more “typical school day”. For the teaching that did take place, he was able to follow lessons during workbook time. When it was floor time, he continued to be a bit fidgety and easily distracted, curious what his friends who weren’t paying attention were up to.
After a few days of attending class without me, he started to show some little signs of stress. He would say that he missed me whereas in the initial days, he didn’t. He would hug me very tightly or hold my hand extra tight when I picked him up from school.
Helpful friends
The kids were curious why I didn’t attend class with my son anymore. Teacher explained that my son’s big enough now and almost 5, so doesn’t need mummy anymore : )
I’m thankful that the kids were kind to him. They would help him with this or that. They included him in their play (teacher did tell them to). It looks like his social skill is slowly improving because on one occasion, he played Lego with his best friend and not just alongside or merely observe.
Assistance still needed
He still needs help from his friends or teachers in various small ways. He sometimes needs help to open his water tumbler (esp when my sister closes it super tight to avoid it spilling). He needs help opening and closing his snack box (I’ve since found a container he CAN open by himself – a Lock & Lock brand). Teacher needs to keep a close eye on him when he’s eating as he has a tendency to put more food in his mouth before completely swallowing the previous bite, and thus gag/vomit.
He needed assistance from the teacher when it came to writing practice (several lines). He was distracted during lessons, by the out-of-the-box girl who sat beside him so I guess that’s why teacher had him sit at her table with the other kids who needed more attention during workbook time.
Teacher was very supportive of him in terms of his toileting needs too. She initially walked with him to toilet but peeped from behind the wall. The next time, she had his friends go with him but would check on him a few seconds later. A few times more and teacher didn’t need to check on him in the toilet. But she had to be aware of how long he was in the toilet and if he didn’t return, she’d go and check on him. On occasion his underwear or pants would get twisted and when he returns to class, teacher would notice him tugging and help him adjust.
Next year, 2011
I believe this “without a shadow aide” trial happened mainly because the class teacher was supportive, understood my son’s need, felt confident enough to handle him, and they had completed the syllabus for the year, and it was only for a few weeks.
Teacher mentioned that next year, it’s most likely that I’ll have to be with him for the first few months at least, to help him settle down because he’ll have new classmates, new teacher, new classroom set up etc.
But the fact remains that he did successfully manage to attend class without me, albeit with assistance from teacher and friends. This definitely bodes well for the future.
Extra hours for me
Those few weeks gave me a few precious extra 3 hours in a day. Even though I didn’t get to relax, I did manage to do many errands.
Day 1: bought the main item for the party packs for his school birthday party & his birthday gift.
Day 2: bought remaining items to fill up the party bags.
Day 3: fell sick & slept the morning away!
Day 4: made a lot of phone calls – quotations for my car’s cracked windscreen, fixed 2 doctor’s appointments for myself, fixed appointment with contractor etc. Cleared some paperwork.
Day 5: shopped for Christmas presents and sister’s birthday present.
Day 6: appointment with Gynaecologist.
Day 7: appointment with Hepatologist.
Day 8: errands to the Laundromat, cake shop, flower shop for my sister’s birthday, met up with contractor.
Day 9: drove to workshop to get opinion on cracked windscreen and picked up some groceries.
Day 10: paperwork at home & general tidying up.
Day 11: accompanied son on field trip.
Day 12: picked up his birthday cake and celebrated with him in school & since it was the last day of school, they were dismissed at 11am.
As they say, no rest for the wicked!
Thursday, December 9, 2010
Mild Cold
Hello! Hello! Hello! It’s been many weeks since my last posting as I’ve not had the time. It’s been busy, stressful and eventful. I’ll try to write several postings on key events that happened as I don’t think it’s possible to summarise it all into just one post.
In this post though, I will write about his mild cold that he currently has and then in my next posts, back track in time to some past events.
He started his mild cold on 18 Nov and he’s still not fully recovered from it yet. He was getting better after a week or so, then got worse, and repeated that better-worse cycle two more times over a 3 week span.
He is on the recovery stage as I write this post and hopefully he’ll recover completely this time so that both he and I can at last have proper sleep.
Although 3 weeks is a long time, I am thankful his cold has been mild and mostly managed with runny nose medicine. He only needed a few days of hospital runs for the nebuliser, and even then it was only using Duovent. In the past, the months of Nov & Dec typically see him falling ill with a bad cold leading onto bronchitis or bronchiolitis, so I hope this means that his immune system is getting stronger as he grows up.
3 weeks of putting plans on hold because of the cold is a long time for me. It’s 3 weeks of the year end school holidays lost.
I had planned for him to complete the 40 sessions of HBOT on 1 Dec. We’ve only done 18 sessions so far. Even though his cold is mild, it has made it difficult for him to equalise as we dive. Perhaps because he’s still small, the sinus and Eustachian tubes are also tiny, and thus either slightly inflamed or congested with a bit of mucus.
I really do want to complete the remaining sessions asap as I’ve seen good benefits from it. His spasticity is reduced which enables him to do more fine motor work. Oral motor has also seen some improvement where he can now purse his lips and chew chunkier spoonfuls of meat. He seems to think a bit faster and speaks his mind more frequently.
I had also planned other activities for him this school holidays, apart from HBOT. I wanted to do Neurosuit therapy to maintain/improve his stamina, and increase his muscle strength. I wanted to have many play dates with some of his classmates, at home and outdoors (at the park, science centre, PetroSains, cinema) to improve his social skills and confidence. I wanted to resume his music class so that the gap between the kids doesn’t grow even wider. We wanted to celebrate his birthday with an outing to the KL International Motor Show, as he’s crazy about cars. I wanted to bring him to see the beautiful Christmas decorations in the many shopping malls. I wanted to start him on swimming lessons in order to be water safe before he starts primary school (one lesson period a week is allocated to swimming).
Well, those were the things I planned for him. Then there were the errands which I planned but got shoved aside...reorganising his room, the kitchen cupboards, my cupboard, the store room...renovation to hack off and replace several cracked floor tiles, chopping down the durian tree, reupholstering the dining chairs (they are peeling so badly that they look like the flaking skin of a sunburnt swimmer)...planning how to help him progress in his maths and phonics...and more...
As you can see, I’m not one to waste time. So instead of carrying out my original plans, we did other home based activities. But I kept them light and easy, and limited the number of activities as he was sick. There were lots of art and craft activities, other fine motor activities, a few pages of simple worksheets a day and reading daily. I had more time (and patience) for him to practice self care skills (self feeding, wiping his backside after poo poo etc). He had a lot of time to play with his vehicles - that’s a special treat I allow as it is the school holidays, and he is sick (and cranky!). For the first few weeks, he literally had a vehicle in his hand the moment he woke, and was the last thing in his hand when the lights were switched off. That’s just how crazy he is about vehicles. : )
Tomorrow, he starts his intensive Neurosuit therapy for 5 consecutive days. It should be ok for the first few days but I’m not sure if he can last 2 hours a day for 5 days! But I’m sure the therapist will adjust accordingly.
In this post though, I will write about his mild cold that he currently has and then in my next posts, back track in time to some past events.
He started his mild cold on 18 Nov and he’s still not fully recovered from it yet. He was getting better after a week or so, then got worse, and repeated that better-worse cycle two more times over a 3 week span.
He is on the recovery stage as I write this post and hopefully he’ll recover completely this time so that both he and I can at last have proper sleep.
Although 3 weeks is a long time, I am thankful his cold has been mild and mostly managed with runny nose medicine. He only needed a few days of hospital runs for the nebuliser, and even then it was only using Duovent. In the past, the months of Nov & Dec typically see him falling ill with a bad cold leading onto bronchitis or bronchiolitis, so I hope this means that his immune system is getting stronger as he grows up.
3 weeks of putting plans on hold because of the cold is a long time for me. It’s 3 weeks of the year end school holidays lost.
I had planned for him to complete the 40 sessions of HBOT on 1 Dec. We’ve only done 18 sessions so far. Even though his cold is mild, it has made it difficult for him to equalise as we dive. Perhaps because he’s still small, the sinus and Eustachian tubes are also tiny, and thus either slightly inflamed or congested with a bit of mucus.
I really do want to complete the remaining sessions asap as I’ve seen good benefits from it. His spasticity is reduced which enables him to do more fine motor work. Oral motor has also seen some improvement where he can now purse his lips and chew chunkier spoonfuls of meat. He seems to think a bit faster and speaks his mind more frequently.
I had also planned other activities for him this school holidays, apart from HBOT. I wanted to do Neurosuit therapy to maintain/improve his stamina, and increase his muscle strength. I wanted to have many play dates with some of his classmates, at home and outdoors (at the park, science centre, PetroSains, cinema) to improve his social skills and confidence. I wanted to resume his music class so that the gap between the kids doesn’t grow even wider. We wanted to celebrate his birthday with an outing to the KL International Motor Show, as he’s crazy about cars. I wanted to bring him to see the beautiful Christmas decorations in the many shopping malls. I wanted to start him on swimming lessons in order to be water safe before he starts primary school (one lesson period a week is allocated to swimming).
Well, those were the things I planned for him. Then there were the errands which I planned but got shoved aside...reorganising his room, the kitchen cupboards, my cupboard, the store room...renovation to hack off and replace several cracked floor tiles, chopping down the durian tree, reupholstering the dining chairs (they are peeling so badly that they look like the flaking skin of a sunburnt swimmer)...planning how to help him progress in his maths and phonics...and more...
As you can see, I’m not one to waste time. So instead of carrying out my original plans, we did other home based activities. But I kept them light and easy, and limited the number of activities as he was sick. There were lots of art and craft activities, other fine motor activities, a few pages of simple worksheets a day and reading daily. I had more time (and patience) for him to practice self care skills (self feeding, wiping his backside after poo poo etc). He had a lot of time to play with his vehicles - that’s a special treat I allow as it is the school holidays, and he is sick (and cranky!). For the first few weeks, he literally had a vehicle in his hand the moment he woke, and was the last thing in his hand when the lights were switched off. That’s just how crazy he is about vehicles. : )
Tomorrow, he starts his intensive Neurosuit therapy for 5 consecutive days. It should be ok for the first few days but I’m not sure if he can last 2 hours a day for 5 days! But I’m sure the therapist will adjust accordingly.
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