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June 1
Session 1: Arrived at Richmond Hyperbaric Health Centre around 10am (an hour early) so we thought we'd go in early anyways to check the place out. It's not a very big place, and it's in one of those industrial parks. There's basically a hallway and at the end is a big room with the 2 chambers inside. The one on the right is smaller and fits 4 adults, and the one on the left is much bigger and fits 6-8 adults (with a "transfer" section that can be sealed off if someone needs to get out). There's a bathroom and a couple of couches and a couple "change rooms" with curtains. We talked to Ms. F. and she explained some of the benefits and some success stories. We asked her a few questions. The pressue is 1.5 A (atmosphere - normal sealevel is 1.0) with 100% oxygen. Anyone receiving the oxygen would have to wear a "space helmet". Because one family was not going to be there we were all invited to go in (all 4 of us). We all had our necks measured for a latex "seal" for the helmets. We left to have lunch and kill time until noon. We decided to all go in, and Luke would have the oxygen. It is fairly close quarters, and you have to sit on and lean against the old "blue gym mats"... it is about 6 feet in diameter, so you have to sit upright, but legs can be stretched out. There was the 4 of us, and 4 other people: 2 children with autism (boy age 7 and girl age 9) and the parent and a caregiver. Plus the attendant who stayed in the whole time. There are two large round doors on either end (the whole thing is about 16 feet long including the transfer section. We went in first. Luke sat on my lap the whole time. Daddy kept Joel occupied. Luke cried and hit his ears as we "went down" (pressurized to 16.1 feet below sea level). We tried our best to calm him down and kept pressing his ears and also got him to blow his nose to relieve the popping in his ears. He slowly calmed down a bit, and after about 10-15 minutes the oxygen was put on (space helmet). Daddy put one on too, to make Luke feel less anxious. They inflated with oxygen and Luke began to really calm down. Must have been a strange sensation. After that, we amused him with stickers and flash cards and other toys. At one point he started crying and wanted it off, and I asked if I could take it off to use a kleenex, and the attendant helped me. We put it back on, and a few minutes later we were at "half-time" which is when everyone can take their oxygen helmets off for a few minutes. Luke didn't, nor did daddy. After a long time, the signal came for the oxygen to come off as we slowly began the "ascent" (no problem for Luke). 15 minutes later the door was opened and we crawled out. We all agreed that while it wasn't wonderful, it could have been much worse. The nice part is the sessions have been changed from 12noon to 10am, which is a much better schedule for us. They've been appreciatively accommodating.
Results: Luke took a while to fall asleep, but other than that, no change. Luke had some nightmares at night, screamed in his sleep a few times. He woke up with a mild outbreak on his cheeks... red and splotchy (Ms. F. at the centre mentioned another client had this so they referred to a naturopath who said it was a symptom of the toxins leaving the body).
June 2 — 25 days left
Session 2: Daddy went in alone with Luke; I stayed at my parent's with Joel. Luke did not have any problems with the descent this time (daddy pressed Luke's ears continually). For the last 45 minutes Luke screeched and giggled, screeched and giggled, screeched and giggled (not in an unhappy way, but a bit maniacal). Apparently it was quite annoying. Daddy did have to ask them to stop midway the descent for him to clear his sinuses.
Results: It took him awhile again to fall asleep. He walked on the gravel/rocks for the first time today with bare feet (was avoiding them / stepping around them the day before). He said a 3-word sentence "I need more" which we've been working on with ABA therapy the last few weeks. Luke thrashed a lot in the night, 3 or 4 times; and he scratched his arms a lot in his sleep (nothing too crazy). He awoke with red and bumpy cheeks again, and this time had mottled-red ear lobes. He had a lack of appetite and did not want to eat his breakfast.
June 3 — 24 days left
Session 3: Daddy said Luke did much better today. Only screeched the last 20 minutes. There was another family in as well... 1 parent, 1 caregiver and two 3-year-old twins (boy and a girl). This means there's 10 in there, plus the attendant. Fortunately, Luke and daddy got to sit separately in the "transfer section" (which was where the attendant had been sitting previously - he had no choice but to sit on a jump-seat in the middle of the other two families). Daddy even said at one point all kids were quiet enough for a conversation between parents; however, the 3-year-olds pretty much screamed the first half of the session. Everyone just accepts that the kids will do what they will do and we'll all just get through it as best as we can. At least no one had an out-and-out conniption. Daddy did not have oxygen today because there were only enough masks for the kids and one parent, and the new parent had it on.
Results: He's been screeching a bit more, using two words a lot, parrotting us quite a bit, seems sillier (giggling a lot to himself), and opened and closed the really heavy sliding door a few times (stronger muscles?). It also did seem like he wanted to interact more with us.
June 4 — 23 days left
Session 4: (Daddy writes:) Luke is becoming a real pro. I told him it was time to go on the submarine and he walked right up the steps and into the little round door to enter the chamber. I was expecting a melt down in the first half of the session when Luke's nose started running. (He's very particular about having his nose blown or wiped especially when he's upset. It seems to calm him.) I didn't want to interrupt the oxygen schedule so I kept him distracted till the "half-time show", when everyone takes off the hoods, and he managed to forget all about his nose after a while. The session didn't seem to drag on as long as the first few. It's amazing how you can actually get used to an experience like this.
Results: Luke is still screeching alot but he does seem a little more interactive. When we're sitting around the dinner table and we ask the kids a question, Joel is usually the first to respond but Luke has beaten him to it a couple of times. He's also put a few three word sentences together!
June 5 — 22 days left
Session 5: (Daddy writes:) Luke and Daddy are both getting used to the pressurizing of the chamber. Once under pressure the oxygen hood is put on and then it's just a matter of keeping Luke occupied for the next 1.5 hours. He did OK up till the first break (at 45 min. of O2). With about 25 minutes to go he started screeching again and we asked the "dive guide" to turn off the light above us in the chamber. This seemed to calm Luke right down and he did fine for the rest of the session. There's been a bit of a heat wave (+30C) on the West Coast and the chamber gets really hot and humid by the end of the session.
Results: When you have Luke's attention he's quite responsive. If his mind is on something else it can still take a few requests before he responds. Luke no longer needs the stepping stool for going to the toilet. I can't wait till he no longer needs the insert...
June 6 — 21 days left
Session 6: (Daddy writes:) Luke did really well. He screeched towards the end again but I think it's out of boredom more than anything. He's used to being interacted with for 7 or 8 hours a day with his pre-school and ABA therapy. I find it difficult to keep him engaged for two hours. We read story books, play with sticker books and use flash cards. It's easier to interact him when he's on my lap, especially with that big plastic oxygen hood on his head. Last day of the first week!
Results:
June 8 — 20 days left
Session 7: I went in with Luke and have to admit I had a mini-meltdown on the drive to Richmond because I got delayed in construction traffic for about 20 minutes. It was very, very stressful, but after a few prayers I actually made it with 5 minutes to spare. Talk about unnecessary drama. Anyways, Luke was great. A little screechy, but I silenced him with a look. We had a hoot with the flash cards...
Results: Seemed quite subdued all afternoon. Got up at 7am instead of the regular 6am (yay).
June 9 — 19 days left
Session 8: Luke was great again. Can't say too much as it's the same every day. Get in, put the helmet on, entertain him with pop-up books, flash cards, sticker books and songs. He's a very good sport about it all. Added bonus was my sister S. came along for the ride and while I was "in the submarine" she bought me two shirts and some pizza for lunch... irrelevant to the blog, I know, but this therapy-life becomes a wee bit of a grind (she says after two days in – haha).
Results: Parrotting 3 words "Don't touch that" :), and first thing in the morning he usually signs "Eat" or says "Brush Teeth", but today he signed and said "Play". Odd for Luke. Seemed a little more "aware"... actually played with the bubbles in the afternoon more than the day before. He also smiled a "sly smile" at the technican today. He was awake in the night from 12–2am which is unusual. Slept on the way to-and-from Richmond.
June 10 — 18 days left
Session 9: OK, towards the end today we were both losing it a little. Luke screeched and mommy prayed. I even broke out into songs for everyone's amusement... actually it's very muffled in there so no one really hears it; and everyone has to resort to singing every once in a while. We're a clammy bunch, doing our best to survive the close-encounter situation. Everyone in there is very well-behaved so we've settled into a fairly peaceful situation. Bonus day: My dad drove, and bought me lunch afterwards. Family is good.
Results: I'll be honest, I'm really reaching for things to write. I'm not seeing anything glaring or jaw-dropping, which I read I was not supposed to expect, but of course I expected it anyway. Sigh. I think, also, that I'm really too close to the situation to tell if he's "changed" at all, so perhaps when daddy's back at the end of the week he'll notice something? If not, the half-way mark of June 15 is coming up and we do another mini-video interview to assess where he's at.
June 11 — 17 days left
Session 10: Drove myself today and there's MORE construction traffic. Ayiyiyi. New route tomorrow. Wasn't late though, as I allow "enough time to change a tire" (my dad's advice). We got moved from the back separate section to the middle of all the kids, which was fine, although I miss the leg room. But we did get to share toys with all the other kids :). Luke became very bored and screechy the last half and there was nothing in the "bag of tricks" that would appease him. Finally I sat him on my lap facing me and sang all the songs I know. Luke's pretty cute about singing, as he hides his hands behind his back for "Where is Thumbkin?" and he says "Um, Ah and Da" for the "Little Green Frog" song; and "O" for the Old MacDonald song (EIEI"O"). It's really fun to interact with him than sing at him. It seems to be a short first hour, and a long second hour.
Results: OK, today he said to Grandma "I throw books" which is a 3-word sentence; albeit one I'm not really proud of - haha. Other than that, he's just as mischievous as ever, no real change in behaviour. I do have to admit that we used to have to clean out his nose with a kleenex whenever he was upset (kind of a "stim" for him) but I explained that from now on he should blow his nose like everyone else, and he does!
June 12 — 16 days left
My Dad drove again today (thanks), so it saves us a bit on gas and I don't have to worry about driving. Wonderful... oh, and it always includes lunch so that's a pleasant bonus to reward myself with after the 2 hours. Today was not a bad day, but Luke's all about the "No", (just like 2-year-old Joel).... so he did not want to play with anything again. It took me a day or two to realize he was just saying "no" so I actually distracted him enough to put stickers in the sticker-book. We sang songs again... he tends to start yawning in the car 10 minutes before we get to Richmond, so he's pretty wiped during the 2 hours, running on fumes sometimes. He wants to "eat, go pee, go, open door, wants to go to Grandpa/Grandma's", but I do my best to say "Later, After, First Submarine/Then Eat" blah, blah, blah.
Results: After lunch at the Flying Wedge we walked out and Luke said "Grandpa's car" (without seeing it yet)... kind of interesting as he usually just tags along hand-in-hand, oblivious to where we're going. He has also been coming up to me and saying "Hi Mom". This is also very new.
June 13– 15 days left
A really great day, because it's my last for a bit (daddy's coming back here to do the next 3 sessions); and because Luke and I prayed beforehand. He was really, really good. Just a wee bit screechy, but it's totally because of utter boredom. We did two sets of singing, and he didn't miss a beat on his "lines"... used to have to prompt him. Both hours went quite quickly, and he seemed more into the toys and sticker books, so that always helps. He does a cute high-five and thumbs up when it's all over.
Results: On the drive too and from Richmond, Luke pointed out the window and said "Cow, Cow, Two Cows" and "Balloons" (at a car dealership). I think I've recorded once or twice before that he's actually looked outside and "labelled" something, so hopefully he's becoming more aware of the world around him.
June 15– 14 days left
Daddy went in with Luke and said the last half went quick, so that was great. Luke coughed a bit, but was otherwise pretty well-behaved.
Results: Luke is saying more "3-word" sentences, in his "baby language" that only we seem to understand (similar to Joel's): "I need more" "Lid back on " and "Go brush teeth". Some of his words, though are becoming much clearer, like kleenex (used to be "kyla" and now it's "keeneh") and Luke (used to be "glue" and now it's "wook"). He's eating well also, and sleeping through the night as usual (no recent midnight awakenings like last week). He is still very focused on one thought and you cannot interrupt his train of thinking... you have to wait until you get his full attention to ask him something; and then he will respond appropriately. This morning (June 16) he came out of bed when we called for him (we're all in the same big room)... usually we have to go get him, but I guess he could "see" us from across the room, so it was okay to crawl out of bed by himself.
June 16 – 13 days left
Daddy went in with Luke again. He was a bit restless and annoying... bending the flash cards, dropping the plastic teapot noisly on the floor. The last half was long, because someone asked how much longer and there was still another 20 minutes to go....
Results: Luke just continues to parrot. He said Ninky-Nonk and Pontepines (from the very-baked show "In the Night Garden").
June 20 – 9 days left
It's getting easier to be in the tank. Luke seems to enjoy my singing the most (?!?!?), so we do that for the last 30 minutes or so.
Results: Still not a lot of obvious change. He pointed to the TV and said "Dora" today spontaneously, but still does not watch TV for longer than a few minutes. When washing his hands in the bathroom he said the water was "too hot", and it was... so that was kind of cool. He takes his shoes off quickly and sometimes without prompting at all. He let us show him how to throw a frisbee today, and wanted to do it again and again (yesterday he just laughed and ran away). When Auntie S. left today he spontaneously said "Ba-bye See-ya S". He wanted to go in the grocery cart (in the big part, Joel was in the front); and he liked it... he's never done that before.
June 25 – 6 days left (Daddy writes:)
After yesterday's session we did our video interview to review the changes we had seen in Luke. He has had 30 hours of HBOT and still has about 10 hours to go.
Negative changes: Nothing to speak of really. After adjusting to the new routine of going in the "submarine" and getting pressurized to 1.5 atm and wearing an oxygen hood for 90 minutes, Luke is now handling it all like an everday experience. All of the kids involved in his sessions are little troopers. (I'm sure there's a lot of "typical" kids that would totally freak out in that tank.) Some regressive signs in Luke could be his screeching, which has returned, and last night he needed to hold on to a puzzle piece when he went to bed. He also seems to be having the odd nightmare at night as he'll wakeup screaming "NO!" or "Mommy HELP!"
Positive changes: Luke is definitely using his words more, sometimes putting a 4-word sentence together (I need more juice). He is much more aware of his surroundings as yesterday he tripped stepping off of a curb because he was too busy looking at the automatic doors and missed seeing the step. He used to be so cautious when walking... looking at his feet for each step. He has a more aggressive style of play now too, which is a good thing as he used to hardly run or try new things. He is now running and climbing and jumping off things which is really cool to see. This new style of play has resulted in a few more bumps and bruises though.
Even his reaction to getting hurt has improved. He calms down much quicker and runs to mommy (or daddy if mommy's not around) for a kiss and a hug and then he's good to go. He is imitating physical and verbal behaviours more and has also began to label things he sees on TV or even things he can't see but knows are coming (like a ride in Grandpa's car).
Now since almost a month has gone by since we started, we have to consider that Luke may have improved this much just staying at home and continuing his ABA. But my parental instinct as well as the testimonies we have read by hundreds of other parents, who have gone through HBOT with their kids, is telling me that HBOT has resulted in some definite improvements in Luke's speech and social skills, and we still have 10 more hours to go. I also belive that the changes we have seen will assist Luke to reach the next levels in his development!
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After yesterday's session we went to see Dr. Sass (eye-doctor) at Insight Development in Langley. He was very impressed with Luke's changes (even said he seemed like a different boy!!?!?). Luke did whatever the doctor asked, with a little prompting. He did the shape puzzle easily, so Dr. Sass could show him a colour-blindness test (find the circle, star and square in the coloured dots). Luke pointed to them, so he is not colourblind (yay). He tried some prism glasses on and played catch with Luke, which shocked us because Luke has never played catch/throw with anyone for that length of time. In the end, we all agreed to buy "prism" glasses as therapy glasses (on an hour or two a day during physical activities). These glasses challenge Luke's brain to make perception adjustments and exercise his mind and eye muscles. We will incorporate them into his sessions when we get back.
June 27 – 3 days left
I've enjoyed some conversations with the other mom in the tank, and the time has flown by. We're both on the same page and have done all the same things, with a few suggestions to each other. It was wonderful to meet someone who understands and has been on the journey as long as we have.
Results: Luke is much more vocal and verbal. Repeating everything we say, and spontaneously asking for things. Joel taught him to say "ONE more"... in a really loud and lengthy voice (emphasis on the "one"), so we hear that for everything now: ONE more strawberry, and then giggles, ONE more chip, and then giggles. It's absolutely adorable. Tonight he said "Good night" right after I said it... warms my heart. I asked him what he wanted for lunch and I said "Muffin?" No. "Toast?" No. "Pancake?" No. "Bacon?" BACON. More Bacon. Bacon. Bacon. Bacon. Think he wanted bacon? Hahahaha. Almost a conversation. I ask him to do little errands and he responds quickly and obediently, for the most part. "Get a fork from the middle drawer", "Put this in the garbage", "Put this in the laundry", "Bring your plate to the counter". This talking thing is quite exciting. Whenever we get into the tank and get settled he right away says "Read book", I say "Which one?" He says either "Farm Book" or "Bus Book", and we read until he says "Fini" (finished). I do realize most people can't quite understand his words yet, but I find it personally satisfying and thrilling that I can understand and we've been "talking" a lot together lately. Dave's dad was quite stoked the other night too, amazed at Luke's words. It's very, very cool. Only 3 more days left, and then back home again!
June 30
I went in with Luke on Monday, and daddy did the last two sessions. We're back in Kamloops now, trying to settle back into our "normal" life. The last few days in the tank were uneventful, although there were new people in to replace the twins. Daddy played the "up, down" game with Luke (Luke gets up, and sits down on his lap), and then used the words "standing, sitting" (we're supposed to teach Luke verbs), and after 3 times Luke started saying the words. One of the other caregivers is a vice-principal at a self-designed online school for special needs children and she was very impressed with Luke's eye contact and especially his ability to speak in context. Another caregiver's specialty is gymnastics, so he recommended that Luke would benefit from some type of gymnastic lessons which we may look into this summer.
Results: Luke is much more verbal and aware. The other day we told him to get a spoon from the drawer as we often do, and this time he came out grinning with the BIGGEST SPOON possible (it was HUGE). It was quite funny. He also knows that we've been trying to get him to "jump" for a very, very long time and I was giving him heck for misbehaving the other day and he started trying to jump and said "jumping"... hoping I'd be distracted enough to not follow through with some discipline. We all laughed; he got his way. He has since been jumping more, especially on the trampoline which shocked one of our BIs. Luke also let me help him crack an egg and mix up the pancake batter. He has never really shown any interest in this, so it was fun to bake with him. He is more aware of Joel and says "Joel sleeping" or "Joel crying". They seem to play better together, and fight together more typically. One night Luke said "Good Night Mommy" (with a little prompting from dad... and then he came and kissed me, and then he said "Need to Kiss Daddy" which is a 4-word sentence. He also said "I need more juice please" a very polite 5-word sentence. He went down the little slide with no problems, coaxing or prompting which is very cool. I think his physical unsteadiness is lessening, he has more physical confidence. Daddy had to do another video analysis on the last day and he mentioned the "Good night" story and Luke spontaneously said "Good Night" (for the cameras, way to go Luke :)... and then when they said "Bye" Luke said "Bye" as well, so that was great to show the improvement. I have to also mention that Luke's poops are amazing ("textbook") lately, which tells us his inside stomach/gut issues are resolved. So, HBOT is over... we'll wait and see if we have to do it again, but for now we'll focus on ABA and enjoy the summer. He has a lot to learn yet and hopefully ABA can make new connections with the new brain cells that have come to life.
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Monday afternoon we had an appointment with Dr. Bratt and she seemed very pleased with Luke's progress. She said he gave her the most meaningful eye contact ever. His behaviour in her office was that of a typical child: he checked out the toys, sat at the little table and asked to go pee :). I remember the first sessions 1.5 years ago when he would just babble and run all around the room, it was always very distracting. We'll test his cholesterol again and start giving him 1 tsp. of apple cider vinegar before each meal to increase his stomach acid, which in turn will help break down the proteins, and then he may hopefully gain some weight. He's still only 31.5 pounds! She will look into what she can do about his increased dopamine activity (I think I mistakenly recorded that it was low, but according to the France test results it was over-active; this is what causes Luke to get stuck on certain things: lights, screws, doors).
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