He’s a quarter way through the series of 40. We’re getting used to being in the chamber, but can’t wait to complete all the sessions. It’s still a bit tricky getting the neck seal to completely seal around his neck as he does move around quite a bit in the chamber.
Last Thursday was a school holiday so he did two dives, one in the morning and another in the afternoon, with at least a 4 hour gap. I’m really trying to complete it as fast as possible, but am acutely aware that it tires him out (not to mention the boredom).
Last Saturday morning, he vomited his milk at home, and he started to cough the night before. So, to be extra cautious, I cancelled Saturday morning’s dive in case he had phlegm which may interfere with equalising. I gave him Promethazine twice on Saturday and thankfully, his cold didn’t progress any further.
To relieve his (and mine!) boredom and to de-stress from all the hyperbaric oxygen therapy, we went to Desa Park City’s park on Sunday morning. It was a good decision. We were blessed with cool weather while we fed the fishes and he rode his bike. Of course, there’s a bit of therapy that I snuck into those simple activities, but it really was mainly for relaxation.
Friday, November 12, 2010
Friday, November 5, 2010
Hyperbaric Oxygen: Progress!
I had started to worry several weeks prior to starting the hyperbaric oxygen treatment (HBOT), about the many many many safety aspects; about how my son would react to being stuck in a chamber with a hood on for an hour; how I’d take to the compression and decompression; whether I’d see any benefits; when will we see the benefits; how best to utilise the hour while in the chamber; what are the changes to my daily routine that I’d have to make to slot in the treatment etc.
People told me to not have high expectations with HBOT (as it’s not a prescribed treatment for CP). People can’t tell me for sure what improvements, if any, my son will have (as each person is so different from another).
After a week of HBOT, with adjustments on my part and on my son’s part, I’m generally happy despite the side effects (tiredness). Happy because there have been improvements!
The 2 areas I’ve seen improvements are in his speech (I think the aspects of cognition and oral motor) and fine motor skills.
Speech
He’s saying more syllables in a single breath:
“Oh my gosh! He gave him so many books!”
"Yeah, just like my rabbit but a bit different."
He’s also saying more (using several breaths to say something much longer):
"It's just red lights, not ghost. It's for warning the big aeroplanes...you are flying too low...and for small helicopters...and small aeroplanes...and big helicopters." (He was referring to the red warning lights on top of tall buildings)
“Twinkle, twinkle, little star, how I wonder what you are. Up above....” (He sang the entire nursery rhyme on his own initiative, and without needing any help)
He’s saying things he doesn’t typically say:
“Thanks for reminding me.”
“Let’s go to find out.”
“What do you think?”
“What are you saying? I don’t understand you.”
Fine motor
He’s now able to put on his sandals (fake crocs) needing me to only hold the sandal steady. He’s able to move his foot this way and that way, to fit into the sandal, quite smoothly, which I’m so surprised to see!
Thank you, thank you God for blessing us! Please continue to pray for protection and progress!
People told me to not have high expectations with HBOT (as it’s not a prescribed treatment for CP). People can’t tell me for sure what improvements, if any, my son will have (as each person is so different from another).
After a week of HBOT, with adjustments on my part and on my son’s part, I’m generally happy despite the side effects (tiredness). Happy because there have been improvements!
The 2 areas I’ve seen improvements are in his speech (I think the aspects of cognition and oral motor) and fine motor skills.
Speech
He’s saying more syllables in a single breath:
“Oh my gosh! He gave him so many books!”
"Yeah, just like my rabbit but a bit different."
He’s also saying more (using several breaths to say something much longer):
"It's just red lights, not ghost. It's for warning the big aeroplanes...you are flying too low...and for small helicopters...and small aeroplanes...and big helicopters." (He was referring to the red warning lights on top of tall buildings)
“Twinkle, twinkle, little star, how I wonder what you are. Up above....” (He sang the entire nursery rhyme on his own initiative, and without needing any help)
He’s saying things he doesn’t typically say:
“Thanks for reminding me.”
“Let’s go to find out.”
“What do you think?”
“What are you saying? I don’t understand you.”
Fine motor
He’s now able to put on his sandals (fake crocs) needing me to only hold the sandal steady. He’s able to move his foot this way and that way, to fit into the sandal, quite smoothly, which I’m so surprised to see!
Thank you, thank you God for blessing us! Please continue to pray for protection and progress!
Thursday, November 4, 2010
Hyperbaric Oxygen: Session 3 – 6
Session 3: Wed, 27th Oct 2010
We tried him on the mask but things didn’t work out as expected, and when he wanted to urinate, we decided to cut short the session to just half hour. He fell asleep just as we got home so I put him to sleep still in his scrubs. He must have been so tired cos he slept for 3 hours straight.
Session 4: Thurs, 28th Oct 2010
Reverted back to using the hood, but also brought in the mask (as thoughtfully suggested by the staff) to be used if he fell asleep in the chamber.
Half way through the session, he needed to urinate! So we “went back up” to allow him to use the toilet, then “went back down”. As it was decompressing, he started to fret and cried (he seldom cries nowadays), so we stopped the session half way. He probably felt discomfort having gone down and up and down again.
Again, he fell asleep on the way home, and this time, he slept for 4 hours straight! During the first two hours of his nap, he didn’t move an inch! That told me just how tired he was, and probably why he cried.
Session 5: Fri, 29th Oct 2010
The boss accompanied us in the chamber. He was genuinely kind and managed to get my son to laugh while in the chamber! My son was so well behaved during the session that it amazed the boss too. I was very relieved there was none of the fretting or crying of the past few days.
We brought in a plastic urinal into the chamber this time round so it made things a lot easier! Didn’t I say that they are really responsive?
Session 6: Sat, 30th Oct 2010
Luckily no one else had booked the chamber for Saturday mornings, so we can complete the 40 sessions faster. We rested a bit, did a few pages of worksheets, made up some literacy games, and read a book (and of course, he used the urinal).
One important tip that the boss told me was to keep the hood slightly puffed (that would indicate that the hood is filled with oxygen). I tend to have a bit of hassle with the neck seal. When my son moves, the neck seal gets loose and I’ve to try to stick the latex together. It’s not a major problem. It’s just that I’ve to be more alert to it from now on.
The staff’s response was to wipe it down with sanitiser (prior to entering the chamber) which makes it stickier.
We tried him on the mask but things didn’t work out as expected, and when he wanted to urinate, we decided to cut short the session to just half hour. He fell asleep just as we got home so I put him to sleep still in his scrubs. He must have been so tired cos he slept for 3 hours straight.
Session 4: Thurs, 28th Oct 2010
Reverted back to using the hood, but also brought in the mask (as thoughtfully suggested by the staff) to be used if he fell asleep in the chamber.
Half way through the session, he needed to urinate! So we “went back up” to allow him to use the toilet, then “went back down”. As it was decompressing, he started to fret and cried (he seldom cries nowadays), so we stopped the session half way. He probably felt discomfort having gone down and up and down again.
Again, he fell asleep on the way home, and this time, he slept for 4 hours straight! During the first two hours of his nap, he didn’t move an inch! That told me just how tired he was, and probably why he cried.
Session 5: Fri, 29th Oct 2010
The boss accompanied us in the chamber. He was genuinely kind and managed to get my son to laugh while in the chamber! My son was so well behaved during the session that it amazed the boss too. I was very relieved there was none of the fretting or crying of the past few days.
We brought in a plastic urinal into the chamber this time round so it made things a lot easier! Didn’t I say that they are really responsive?
Session 6: Sat, 30th Oct 2010
Luckily no one else had booked the chamber for Saturday mornings, so we can complete the 40 sessions faster. We rested a bit, did a few pages of worksheets, made up some literacy games, and read a book (and of course, he used the urinal).
One important tip that the boss told me was to keep the hood slightly puffed (that would indicate that the hood is filled with oxygen). I tend to have a bit of hassle with the neck seal. When my son moves, the neck seal gets loose and I’ve to try to stick the latex together. It’s not a major problem. It’s just that I’ve to be more alert to it from now on.
The staff’s response was to wipe it down with sanitiser (prior to entering the chamber) which makes it stickier.
Monday, November 1, 2010
Hyperbaric Oxygen: Sessions 1 - 2
Apart from his concert performance, the hyperbaric oxygen treatment (HBOT) had me very nervous.
I had initially planned to start HBOT on Monday morning, the day after his concert. However, I was such a nervous wreck that I couldn't even decide whether to postpone it to Tuesday instead. In the end, I just took the plunge (excuse the pun) and he had his first "dive" on Monday afternoon.
Session 1: Monday, 25 Oct 2010
Being locked up on a small space (can sit 4), having your son wear a latex neck seal and a plastic hood over his head with hoses attached, and wearing scrubs, is not a normal everyday experience. To say the least, the entire experience takes a bit of getting used to.
I was giving uncontrollably huge yawns every second to equalise the pressure as it was going down. To help my son, I was advised to have him drink through a straw (thanks for the tip Fe), which I had him do.
I'm so thankful that my son didn't cry or fuss on the 1st day. I could tell that he was a bit scared but was also being brave about it.
I think it helped greatly that he had a good experience when we visited their facility earlier this year, at which time I also had the hood briefly placed over his head (just to see his reaction). Then a few months ago, we visited their facility again at their new location on their Open Day, as I wanted him to feel comfortable with the set up. However, I must say that I prayed hard about it too!
To pass the time, they played the movie "Up" for us to watch. Since it was played on a laptop outside the chamber, viewed through a porthole, it was more of a silent movie version, and my son lost interest in it part way through. So we did some reading instead. I had prepared a bag full of worksheets, a few books, and a pencil for him so as to make it more productive (again, thanks for the tip Fe).
Session 2: Tuesday, 26 Oct 2010
He must have been very tired after the big school party that he fell asleep in the chamber.
After getting used to it, the chamber can be a bit relaxing especially when the lights are switched off, and cool air starts circulating. There are no noises, except for the blower occasionally going on and off to ventilate it. There are no distractions like the handphone, internet, visual reminders of chores yet to be done etc.
But it's not for those even mildly claustrophobic. Inside, it probably measures only 5 feet by 3 feet at widest, which is comfortable enough for my son and I.
The staff have been very kind and thoughtful. They had answered all my 20 odd questions via email, and further questions I had when I was there.
Having noted that I was very nervous, they were very patient, understanding and accomodating where possible.
They were kind enough to allow me to wear their scrubs (shirt and pants style) instead of the centre's gown. I could even bring it home for ease of changing into it in the comfort of my own home before driving to the chamber.
At the end of session 2 (when my son fell asleep), he saw that my son's hair was damp from sweat, he suggested that my son try the mask instead the next day.
So far, so good...
I had initially planned to start HBOT on Monday morning, the day after his concert. However, I was such a nervous wreck that I couldn't even decide whether to postpone it to Tuesday instead. In the end, I just took the plunge (excuse the pun) and he had his first "dive" on Monday afternoon.
Session 1: Monday, 25 Oct 2010
Being locked up on a small space (can sit 4), having your son wear a latex neck seal and a plastic hood over his head with hoses attached, and wearing scrubs, is not a normal everyday experience. To say the least, the entire experience takes a bit of getting used to.
I was giving uncontrollably huge yawns every second to equalise the pressure as it was going down. To help my son, I was advised to have him drink through a straw (thanks for the tip Fe), which I had him do.
I'm so thankful that my son didn't cry or fuss on the 1st day. I could tell that he was a bit scared but was also being brave about it.
I think it helped greatly that he had a good experience when we visited their facility earlier this year, at which time I also had the hood briefly placed over his head (just to see his reaction). Then a few months ago, we visited their facility again at their new location on their Open Day, as I wanted him to feel comfortable with the set up. However, I must say that I prayed hard about it too!
To pass the time, they played the movie "Up" for us to watch. Since it was played on a laptop outside the chamber, viewed through a porthole, it was more of a silent movie version, and my son lost interest in it part way through. So we did some reading instead. I had prepared a bag full of worksheets, a few books, and a pencil for him so as to make it more productive (again, thanks for the tip Fe).
Session 2: Tuesday, 26 Oct 2010
He must have been very tired after the big school party that he fell asleep in the chamber.
After getting used to it, the chamber can be a bit relaxing especially when the lights are switched off, and cool air starts circulating. There are no noises, except for the blower occasionally going on and off to ventilate it. There are no distractions like the handphone, internet, visual reminders of chores yet to be done etc.
But it's not for those even mildly claustrophobic. Inside, it probably measures only 5 feet by 3 feet at widest, which is comfortable enough for my son and I.
The staff have been very kind and thoughtful. They had answered all my 20 odd questions via email, and further questions I had when I was there.
Having noted that I was very nervous, they were very patient, understanding and accomodating where possible.
They were kind enough to allow me to wear their scrubs (shirt and pants style) instead of the centre's gown. I could even bring it home for ease of changing into it in the comfort of my own home before driving to the chamber.
At the end of session 2 (when my son fell asleep), he saw that my son's hair was damp from sweat, he suggested that my son try the mask instead the next day.
So far, so good...
Concert Performance - 2nd day
He did well on the second day too! I managed to see him perform up close (I peeped through the side door) as most of the parents of his classmates weren't there to block my view (they came on Day1).
At a point in time during his performance, he even smiled very naturally! My husband said that he looked more relaxed compared to Day 1. I'm very happy that he came both days!
Prior to his performance, I was again nervous even though he did well the day before. So I kept myself occupied by helping with the kids, and having my nasi lemak :)
This time round, I managed to speak to three other parents. Even though it was just for a few minutes each time, I was happy enough to have made the connection with them. You see, I don't get much chance to socialise!
Speaking with one of the parents brought a bit of perspective to my challenges, as I was again reminded that it can also be challenging when raising a typically developing child. Another parent of a typically developing child was encouraging and had kind words.
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