Sleep - a 6 or 7 hour shift followed by an hour awake and another 2 hours of sleep - up by 6 - sometimes waking a time or two for a cuddle - can't remember how this compares- I'm not getting enough sleep =)
Eyes- I think they are crossing worse- it appears that he's working them harder- trying to do more
Hands- opening Right to drop toy, using left a little more, trying pincer grasp and when failing uses rake of hand with the remaining 3 fingers instead of all 5
Arms- I've been using the word "no" to get him to stop the ATNR left arm bend with a fit at night or with frustration as when he rolls - maybe he is becoming more aware because sometimes I say no and he stops it instead of me having to force it to stop
Legs - crossing terribly when walking, seem weaker, is this less high tone - a good thing in theory but makes walking harder - otherwise still kicking equally Hips- still seem more flexible and assisting more in rolling - all the way over a little easier - Also - legs kick when he's on a flat surface trying to roll- he learned this in our roll off the bed game and is translating it to a flat surface- I'm proud of that transfer
Eating- pretty solid - increasing, tolerating well - however on this last Saturday (the one before Thanksgiving) I began to notice reflux type problems starting and have increased a bit over the last few days. One morning he wouldn't/couldn't eat much although I'm very regular with his medicine for the reflux - otherwise is able to eat a lot of puffs and large bites of food
Awareness - there is this weird thing he's doing where he is getting upset when watching a particular scene in Elmo's world where he interprets it as something bad is happening to Mr. Noodle - there are 2 scenes to date (nov 25) where he's crying over something that is happening to mr noodle- one is where a kite takes him away and another is where he's a butterfly and a large net is trying to trap him -the kids narrating the scenes do act in mock-panic and he literally falls apart watching the scene and recovers as soon as it's over - I'm currently working to reassure him and making sure to be present for these scenes
Also- when his turn to get checked for his ears was over - even if the kid next to him (in my test case, another baby) is getting checked he doesn't get upset like he used to- and then I had the tecnichian pretend to check him and still he wasn't worried- I wasn't holding him down like usual for an ear check but it was interesting that he made that distinction
Crawl- more likely to get into crawl position and rock back and forth a little once I have his arms propping him up - not really making crawling motions like he has in the past but strengthening by being in that position
Verbal- same although I feel like there's something going on there - better babbling to the elmo dvd maybe and better noises, nothing that makes any more sense but somehow better
Mood- I am more able to leave him on the floor to run to the bathroom - he's becoming more relaxed about this situation - and his sense of humor is increasing in what all he finds funny and will entertain him
Thursday, November 26, 2009
Tuesday, November 24, 2009
Day 20 - ALL DONE
I wrote "all done" to be funny- that's what we say to Oliver. When his accupuncturist (is that even a correct form of the word?) said it yesterday to him he was obviously happy that she was done messing with him. =)
So today I'm cleaning and he's watching Elmo. We had a little celebration/going away party for one of the technicians and we're going to exchange e-mail with other parents. I'm going to try to keep in touch with the woman whose 2 year old has CP but it's not that similar of a case overall. None of them are really. At least 2 other parents are planning on coming back already. The others are considering it. I'm considering it but that's not something I need to pay attention to at the moment.
I'll try to make note of the behavioral summary in the next day or so but I will also make a note of it at the 1 month, 2 month and 3 month post-treatment marks when we're supposed to see more.
So today I'm cleaning and he's watching Elmo. We had a little celebration/going away party for one of the technicians and we're going to exchange e-mail with other parents. I'm going to try to keep in touch with the woman whose 2 year old has CP but it's not that similar of a case overall. None of them are really. At least 2 other parents are planning on coming back already. The others are considering it. I'm considering it but that's not something I need to pay attention to at the moment.
I'll try to make note of the behavioral summary in the next day or so but I will also make a note of it at the 1 month, 2 month and 3 month post-treatment marks when we're supposed to see more.
Day 19 - Almost over
All of the parents are talking about getting in last minute trips- to the Bristol motor speedway or boone for shopping. I'm just looking for a good night's sleep! I started cleaning the apartment today so we'll be ready to leave.
1st dive- average - and then I took him home for a whopping 17 minute nap. But we played a bit in the exersaucer - he loves this toy!
2nd- same- and we left right away to go to Boone. We got our fun trip in too but since Ollie hadn't slept it was sort of like having a ticking time bomb. That's not fair to say- he never actually melts down in public- he just gets progressively fussier. I tried to shop but didn't accomplish a whole lot. The accupuncturist gave me the contact info for a more local doc, we went to Earthfare and a few other places.
Oliver went down for bed without too much fuss and I stayed in his room sort of napping for a bit. Just as soon as I tried to leave though he woke up. But he did his average night thing and woke up at 6.
1st dive- average - and then I took him home for a whopping 17 minute nap. But we played a bit in the exersaucer - he loves this toy!
2nd- same- and we left right away to go to Boone. We got our fun trip in too but since Ollie hadn't slept it was sort of like having a ticking time bomb. That's not fair to say- he never actually melts down in public- he just gets progressively fussier. I tried to shop but didn't accomplish a whole lot. The accupuncturist gave me the contact info for a more local doc, we went to Earthfare and a few other places.
Oliver went down for bed without too much fuss and I stayed in his room sort of napping for a bit. Just as soon as I tried to leave though he woke up. But he did his average night thing and woke up at 6.
Sunday- Day off & bored
I had made plans of course but in rural areas it doesn't usually amount to much and you have to wait for things to open up on a Sunday. Oliver woke up early so I waited until the attempted morning nap. If I remember correctly I think it was 45 minutes that we napped together. We killed some time in Wal-mart and then Ingles buying baby food. By noon I was starving so we ate at the Good Ol Days ice cream shop. So by 1 we were back at the apartment. Oliver was grumpy and there wasn't much else to be done. The milkshake I had eaten left me fairly immobile so we moved slowly through the afternoon before going for milk at the local farm around 4. I can tell he's getting tired of Elmo but there aren't any other options. He wouldn't go down for sleep in his usual position. I had to cuddle him chest to chest into my shoulder. I thought it would be tricky to get him down into the bed but he was fast asleep. He's moving into a pattern of sleeping for a first shift of up to 7 hours, usually just 6 and frequently waking up for no apparent reason but going back down pretty easily. I feed him in the middle of the night but he's been waking up for good by 6. I can't wait to have some night help again.
Sunday, November 22, 2009
Day 18- Saturday
The older kids are really anxious to have this over with and so are the parents but the kids show it a little more. I almost wished we didn't have Sunday off because what do you do with an infant on a day off alone in a city that is small enough that not much is open...
1st Dive- I came back to the apartment thinking I should clean or do something in preparation for leaving in a few days but that won't really work since we use everything daily.
45 minute morning nap for both of us!
2nd Dive- he had a different person because Sarah went to the funeral of Bob and Judith's daughter, her cousin. He didn't even cry for her- it was amazing!
We went into town, skipping the afternoon nap - the morning nap was long enough that any afternoon nap would probably be really short. We visited the cheese factory which I had been excited about. Oliver wasn't so keen on the idea. And I thought they were making cheese that day but they must have finished because the curtain was drawn shut on the cheese making room. We walked around a little but he finally forced us home.
He went down in about 20 minutes and was up 20 minutes later. The next round took longer and then I think the neighbors went out for a bit so he slept for another 7 hour 1st shift.
1st Dive- I came back to the apartment thinking I should clean or do something in preparation for leaving in a few days but that won't really work since we use everything daily.
45 minute morning nap for both of us!
2nd Dive- he had a different person because Sarah went to the funeral of Bob and Judith's daughter, her cousin. He didn't even cry for her- it was amazing!
We went into town, skipping the afternoon nap - the morning nap was long enough that any afternoon nap would probably be really short. We visited the cheese factory which I had been excited about. Oliver wasn't so keen on the idea. And I thought they were making cheese that day but they must have finished because the curtain was drawn shut on the cheese making room. We walked around a little but he finally forced us home.
He went down in about 20 minutes and was up 20 minutes later. The next round took longer and then I think the neighbors went out for a bit so he slept for another 7 hour 1st shift.
Day 17 - Fri - final day of sound
I thnk we focused on the fish fry most of the day. Which was a good alternative to focusing on how Oliver slept only in 2 hour shifts that night. I wouldn't have made it without Nathan and was just hoping that he would do better that night after Nathan left. It's now Sunday so I can't remember all the details of the day.
1st Dive/Sound- he fell asleep on the way home and Nathan sat in the parking lot for 15 minutes with him but it was a short one. We spent the rest of the time in the apartment.
2nd Dive/Last Sound Session - it wasn't a notable dive but I had been having his caregiver bring the bag with a diaper and wipes in for the last few days because he had been working on dirtying it and I didn't want it to happen inside the chamber when they weren't prepared. I had mentioned the problem to the accupuncturist and had given 2 oz of prune juice in the morning. We were mid-conversation at about 5 minutes left of the sound tape and I heard the tell-tale messy noise. But I thought it wasn't worth getting up for- he was in a good paper diaper and we needed to finish the last 5 minutes. We made it to the end of the tape but I had to call in the reinforcements with towels and help. I wrapped him in a towel as they 409'd the chair we had been in and I had to change us both in the bathroom there before coming home! It was so gross. It was probably because I had just been telling people that Oliver had never peed on us.
With his belly feeling better and being freshly washed and all, he slept for an hour before we headed down for the fish fry at the outreach soup kitchen place below. They have it every other Friday. It was great! We ate at the neighbor's house- she's here with her 7 year old son. And then Nathan left. Oliver and I played upstairs in the apartment for a couple of hours and then off to bed. Although it took a long time he was down for 7 hours for his first shift of sleep.
1st Dive/Sound- he fell asleep on the way home and Nathan sat in the parking lot for 15 minutes with him but it was a short one. We spent the rest of the time in the apartment.
2nd Dive/Last Sound Session - it wasn't a notable dive but I had been having his caregiver bring the bag with a diaper and wipes in for the last few days because he had been working on dirtying it and I didn't want it to happen inside the chamber when they weren't prepared. I had mentioned the problem to the accupuncturist and had given 2 oz of prune juice in the morning. We were mid-conversation at about 5 minutes left of the sound tape and I heard the tell-tale messy noise. But I thought it wasn't worth getting up for- he was in a good paper diaper and we needed to finish the last 5 minutes. We made it to the end of the tape but I had to call in the reinforcements with towels and help. I wrapped him in a towel as they 409'd the chair we had been in and I had to change us both in the bathroom there before coming home! It was so gross. It was probably because I had just been telling people that Oliver had never peed on us.
With his belly feeling better and being freshly washed and all, he slept for an hour before we headed down for the fish fry at the outreach soup kitchen place below. They have it every other Friday. It was great! We ate at the neighbor's house- she's here with her 7 year old son. And then Nathan left. Oliver and I played upstairs in the apartment for a couple of hours and then off to bed. Although it took a long time he was down for 7 hours for his first shift of sleep.
Friday, November 20, 2009
Day 16 - TR
The night sleep turned out alright- nothing too bad. The morning was a bit complicated. I get into a schedule and although I love having Nathan's help, it's odd when things are thrown off.
1st Dive/sound- Nathan took him and so I had a chance to nap. What I didn'realize is that the night before the adult daughter of the owners had just passed away unexpectedly. It was some combination of complications relating to H1N1 and pnemonia among other things. So the morning was a rough one for everyone. You just feel so upset that you're with a family that is helping so many but so powerless to help their own daughter.
We didn't try for the morning nap again although I knew we had the afternoon filled with a trip to Boone. We ate instead and then Nathan took him back to the center so I could get us ready for the afternoon.
2nd - I don't have much info except have I mentioned the sucker? It's our new disctraction technique during sound and it's adorable. Nathan tried it and thought it was great. Good thing we're not against the use of sweets.
Boone- The visits to the accupunturist seem to be a good idea but it's hard to know what benefit they are having. She says there is improved pulses still and the visits are short so it's not too hard on Ollie. I told her he had a little digestive distress and mentioned some of his improvements. We're going back one more time.
We stopped at EarthFare for tryptophan - 'tis the season right? It's in turkey- makes you sleepy - thought we would try it as a sleep aid. I'll get back to you on the results but we haven't started yet. We got home a little late and Oliver was finally falling asleep. After a day of no naps it was no wonder. So we tried to get him straight to bed but that didn't work - it doesn't usually but it's worth the try. He ate a little and then got his milk and we tried for bed again. I don't think it was too bad but for the night sleep he only slept 2 hours at a time- all night long. It was awful. He was up for an hour or more in between each small session of sleep. I guess I should look up the tryptophan dosing so I can start it tonight.
1st Dive/sound- Nathan took him and so I had a chance to nap. What I didn'realize is that the night before the adult daughter of the owners had just passed away unexpectedly. It was some combination of complications relating to H1N1 and pnemonia among other things. So the morning was a rough one for everyone. You just feel so upset that you're with a family that is helping so many but so powerless to help their own daughter.
We didn't try for the morning nap again although I knew we had the afternoon filled with a trip to Boone. We ate instead and then Nathan took him back to the center so I could get us ready for the afternoon.
2nd - I don't have much info except have I mentioned the sucker? It's our new disctraction technique during sound and it's adorable. Nathan tried it and thought it was great. Good thing we're not against the use of sweets.
Boone- The visits to the accupunturist seem to be a good idea but it's hard to know what benefit they are having. She says there is improved pulses still and the visits are short so it's not too hard on Ollie. I told her he had a little digestive distress and mentioned some of his improvements. We're going back one more time.
We stopped at EarthFare for tryptophan - 'tis the season right? It's in turkey- makes you sleepy - thought we would try it as a sleep aid. I'll get back to you on the results but we haven't started yet. We got home a little late and Oliver was finally falling asleep. After a day of no naps it was no wonder. So we tried to get him straight to bed but that didn't work - it doesn't usually but it's worth the try. He ate a little and then got his milk and we tried for bed again. I don't think it was too bad but for the night sleep he only slept 2 hours at a time- all night long. It was awful. He was up for an hour or more in between each small session of sleep. I guess I should look up the tryptophan dosing so I can start it tonight.
Thursday, November 19, 2009
Day 15 - are we there yet? 3/4ths of the way
I'm glad today was Nathan's day to get here. All of the parents were feeling a little tired of it and ready to go home. It's been dreary and rainy so this mountains aren't as pretty and inspirational. Oliver's sleep wasn't amazing but still better than before. We'll get 6 or 7 hours straight at first, without a cuddle and up at 2 and 6. The 2nd visit for accupunture hasn't left as much of an impression on me. Why do some things seem to have an affect (while most don't) and why doesn't it last?
1st Dive/Sound- their sound sometimes sounds so rock-n-roll or nursery rhyme you just wonder what they are listening to!
I decided not to bother with the morning nap- 40 minutes of effort for a 20 minute nap is kind of crazy.
2nd Dive/sound- of course he was tired- Elmo isn't working as well even though he has new videos in there. Maybe he prefers the repetition of some of the old. He was falling asleep hard during the sound. I was patting the bottoms of his feet and really messing with him to keep him awake. At the very end he was standing up facing me and sort of sucking on my arm as he fell asleep despite the fast music. I usually take my time but I rushed out of there to get him home for a nap. Of course he perked up in the car for Elmo- I didn't want him to sleep on the way home. But once I got back he was asleep within 5 minutes. And then... drum roll please- he slept for a full.... 40 minutes. haha So instead of 2 20 minute naps I was rewarded with a 40 minute nap. Oh well, it was pretty fun to not try for the morning one- we played instead- and it was nice to have him fall asleep so quickly.
It was raining so I decided not to go anywhere. We played at the apartment and at the very end of the night I finally put on Elmo to talk to Nathan for a minute and get his bath ready. Oh my gosh - this bath thing has become Really scary. He is so upset by them. But then I had this thought - maybe since I've been teaching him to use his body to move he actually understands now that he can and that is why he's pushing himself out of the tub. Am I giving him too much credit or does this sound right? Just trying to find the bright side. Bedtime wasn't so easy but at least Nathan is on for the midnight shift.
Behavior Notes- Oliver was really perfecting his "drop the toy for mom to pick up" game which made me happy to see him opening his hand at will and he'll roll on the edge of the bed and then use his trunk strength (what trunk strength right?) to pull himself towards me and get the arm under his body unstuck to try to use it to push himself towards me- it's a great development. He is also finding so many new things funny and who isn't motivated by his laugh. So although I can't say it's oxygen related I bet it doesn't hurt for him to be having the help of the o2 as he's trying to accomplish these new things. No way to make a comparison but he is certainly making progress pretty quickly while we're here. It will be very helpful to get the opinions of others once we leave.
1st Dive/Sound- their sound sometimes sounds so rock-n-roll or nursery rhyme you just wonder what they are listening to!
I decided not to bother with the morning nap- 40 minutes of effort for a 20 minute nap is kind of crazy.
2nd Dive/sound- of course he was tired- Elmo isn't working as well even though he has new videos in there. Maybe he prefers the repetition of some of the old. He was falling asleep hard during the sound. I was patting the bottoms of his feet and really messing with him to keep him awake. At the very end he was standing up facing me and sort of sucking on my arm as he fell asleep despite the fast music. I usually take my time but I rushed out of there to get him home for a nap. Of course he perked up in the car for Elmo- I didn't want him to sleep on the way home. But once I got back he was asleep within 5 minutes. And then... drum roll please- he slept for a full.... 40 minutes. haha So instead of 2 20 minute naps I was rewarded with a 40 minute nap. Oh well, it was pretty fun to not try for the morning one- we played instead- and it was nice to have him fall asleep so quickly.
It was raining so I decided not to go anywhere. We played at the apartment and at the very end of the night I finally put on Elmo to talk to Nathan for a minute and get his bath ready. Oh my gosh - this bath thing has become Really scary. He is so upset by them. But then I had this thought - maybe since I've been teaching him to use his body to move he actually understands now that he can and that is why he's pushing himself out of the tub. Am I giving him too much credit or does this sound right? Just trying to find the bright side. Bedtime wasn't so easy but at least Nathan is on for the midnight shift.
Behavior Notes- Oliver was really perfecting his "drop the toy for mom to pick up" game which made me happy to see him opening his hand at will and he'll roll on the edge of the bed and then use his trunk strength (what trunk strength right?) to pull himself towards me and get the arm under his body unstuck to try to use it to push himself towards me- it's a great development. He is also finding so many new things funny and who isn't motivated by his laugh. So although I can't say it's oxygen related I bet it doesn't hurt for him to be having the help of the o2 as he's trying to accomplish these new things. No way to make a comparison but he is certainly making progress pretty quickly while we're here. It will be very helpful to get the opinions of others once we leave.
Wednesday, November 18, 2009
Day 14- sleep okay- accupuncture appt, molar
I should have put him down for bed sooner. He woke up for a cuddle at the usual midnight time but then 20 minutes later needed round 2 of cuddling. Then he woke at 3 instead of 4. When he woke at 3 though he was so cute and happy and talkative. It's no wonder it took me more than an hour to get him down again. And I guess 2 hours is his max for second shift of sleeping because he woke up an hour earlier than the previous few days.
1st Dive/Sound - average
Very short nap- maybe not even 20 minutes and after that and eating it was time to get back to the center
2nd Dive/Sound - Elmo is losing it's effectiveness and I worried about driving to Boone with an already grumpy boy, not receptive to Elmo and who wouldn't sleep in the car. The sound session was weird- rock-like and quick and jumpy. They didn't seem to mind it but we could hear it from the 2 louder headphones. (Oliver's headphone set it on a lower volume)
We were a few minutes late leaving the center for the appointment time we had. I hate rushing. I kept Elmo off for Oliver to nap but with a 35/40 minute drive it's never a good recipe for sleep. He fussed or cried for all but the last 5 minutes when he finally fell asleep and then we were there. The doctor was impressed by his reaction to the last treatment and his amount of sleep. I asked what would it mean if he didn't keep it up. She assured me that we would be able to tell one way or the other if we were on the right track with treatments. And when she was checking his head he was lying down on his back wailing so I took the opportunity to look in his mouth. He has a molar coming in on the Left side. It's the right side he's been chewing on for months. She asked if his teething seemed drawn out. I told her that once I felt a tooth it could still take a month to pop through. She said that coincided with things she was already working on so maybe he'll get a little teething relief.
We did stop for elmo DVDs and he was pretty good in the store. At home we had enough time to eat and get straight to bed. It was a quick 20 minutes to get him to fall asleep but 20 minutes later he was up. As I sat in his room with him for the next 40 minutes to get him back to sleep I realized it was probaby a noise issue. Even with the noise machine on high right next to his head the noises were sharp and startling. I guess it's still better than shared housing though. A consideration if there is a next time. I could switch his room but Nathan is coming in tonight and that would make sleeping arrangements awkward. But he slept well from that point although his schedule was off. He woke early- at 2, without needing the cuddle time but 2 is not ideal. It took Forever to get him down again and then he was up at 6. I should be glad it wasn't earlier. And I wonder if the noises from the kitchen woke him in the morning.
Another parent said her son woke in the middle of the night as well and took a long time to fall back asleep. We always wonder if it's the sound. Who knows right?
1st Dive/Sound - average
Very short nap- maybe not even 20 minutes and after that and eating it was time to get back to the center
2nd Dive/Sound - Elmo is losing it's effectiveness and I worried about driving to Boone with an already grumpy boy, not receptive to Elmo and who wouldn't sleep in the car. The sound session was weird- rock-like and quick and jumpy. They didn't seem to mind it but we could hear it from the 2 louder headphones. (Oliver's headphone set it on a lower volume)
We were a few minutes late leaving the center for the appointment time we had. I hate rushing. I kept Elmo off for Oliver to nap but with a 35/40 minute drive it's never a good recipe for sleep. He fussed or cried for all but the last 5 minutes when he finally fell asleep and then we were there. The doctor was impressed by his reaction to the last treatment and his amount of sleep. I asked what would it mean if he didn't keep it up. She assured me that we would be able to tell one way or the other if we were on the right track with treatments. And when she was checking his head he was lying down on his back wailing so I took the opportunity to look in his mouth. He has a molar coming in on the Left side. It's the right side he's been chewing on for months. She asked if his teething seemed drawn out. I told her that once I felt a tooth it could still take a month to pop through. She said that coincided with things she was already working on so maybe he'll get a little teething relief.
We did stop for elmo DVDs and he was pretty good in the store. At home we had enough time to eat and get straight to bed. It was a quick 20 minutes to get him to fall asleep but 20 minutes later he was up. As I sat in his room with him for the next 40 minutes to get him back to sleep I realized it was probaby a noise issue. Even with the noise machine on high right next to his head the noises were sharp and startling. I guess it's still better than shared housing though. A consideration if there is a next time. I could switch his room but Nathan is coming in tonight and that would make sleeping arrangements awkward. But he slept well from that point although his schedule was off. He woke early- at 2, without needing the cuddle time but 2 is not ideal. It took Forever to get him down again and then he was up at 6. I should be glad it wasn't earlier. And I wonder if the noises from the kitchen woke him in the morning.
Another parent said her son woke in the middle of the night as well and took a long time to fall back asleep. We always wonder if it's the sound. Who knows right?
Monday, November 16, 2009
Day 13 - still sleeping
That's 3 days of 11 hours at night. No one can cross their fingers as hard as I can when it comes to this trend continuing. Oh how I could lead a normal life if only my child would sleep. He's not really napping but the night sleep is key. So here's an example of how people are funny. At lunch yesterday we were in a restaurant - a waffle house type thing- and the couple next to me talked to me as if we shared a table for the meal. Their 5 month old just started sleeping through the night- their daughter had accomplished it in just 1 month. I said that Oliver was still working on it. The man kind of leaned in as if sharing a secret- "what you do is get ya a little benadryl". I wanted to come back with a sassy southern accent "honey - this child's had valium that won't solve his sleep problems" Everyone that's had kids is an expert. And one day someone is going to have something for me that actually works on my child. Did I tell you about the time that someone asked if we had tried using a mobile- one of those music/rotating animal thingies in the crib. "Oh my gosh! If only I had known that was the secret- we could have been using one all along!!!!" He loved his mobile - but not for sleep. did that sound too mean?
1st Dive - fine- and sound started up again today - wasn't exactly looking forward to it in case it was causing some of the disruptions for him.
Meager 20 minute nap at home but before that we ate and had a pretty good time.
2nd - pulled his hood off twice they said- it's more of an issue that he detaches one part from another - and I think he can't move his hands on purpose! Sound- I sort of use another kid in there to gauge how it's treating him. Last week it was a TR night that every parent said their kid was bad- after the 2nd session of the sound that day they all were either bouncing off the walls or woke up super early etc. The sound this afternoon seemed to be a bit more troublesome than the morning. They say that the frequencies will affect different people differently but I watch the other boy just in case it gives a clue.
Oliver was pretty good lying on the floor after both sound sessions today. I always have to run to the bathroom and so I just leave him to play and he was alright with it. At home we ate and tried for a nap - another 20 minute power nap and it was pretty late - after 3. So when he got up we headed out for a walk before it got dark and then to pick up more milk form the local farm. What would I do without that TV and elmo in the car? We always seem to be eating- it was time to eat again when we got back and he did really well with his baby mac and cheese. I remember when he first started eating we gave him ridiculously small amounts on the spoon and only gradually increased. Plus we always tilted him way back- either in the crook of my leg or in the reclined high chair. I haven't bothered with either the recline or the gradual. I've been shoving 1/3 to 1/2 spoonfulls (the smaller type baby spoon) to a straight up Oliver since yesterday and he only started eating a few days ago. I actually never did recline him - I was being lazy I guess but I'm glad it's working out- it proves that he's working his tongue better instead of just letting the food slide down. I'm pretty excited but trying not to get too excited just in case. So then instead of giving him a bath- I couldn't handle the screams - and instead of going to bed at a decent hour - I put him in the exersaucer - he loves this toy now! I can visualize a day when I can put him in it and walk into the next room. Nathan gets away with it but one day so will I. =)
So I had to pay for delaying the bedtime - or maybe it was the aggitation of the sound. It took an hour and he was really worked up. I hear him stirring now and he's only been down for 45 minutes so hopefully I can write tomorrow about day 4 of good sleep. We see the accupunturist tomorrow afternoon in case that's the helpful treatment.
1st Dive - fine- and sound started up again today - wasn't exactly looking forward to it in case it was causing some of the disruptions for him.
Meager 20 minute nap at home but before that we ate and had a pretty good time.
2nd - pulled his hood off twice they said- it's more of an issue that he detaches one part from another - and I think he can't move his hands on purpose! Sound- I sort of use another kid in there to gauge how it's treating him. Last week it was a TR night that every parent said their kid was bad- after the 2nd session of the sound that day they all were either bouncing off the walls or woke up super early etc. The sound this afternoon seemed to be a bit more troublesome than the morning. They say that the frequencies will affect different people differently but I watch the other boy just in case it gives a clue.
Oliver was pretty good lying on the floor after both sound sessions today. I always have to run to the bathroom and so I just leave him to play and he was alright with it. At home we ate and tried for a nap - another 20 minute power nap and it was pretty late - after 3. So when he got up we headed out for a walk before it got dark and then to pick up more milk form the local farm. What would I do without that TV and elmo in the car? We always seem to be eating- it was time to eat again when we got back and he did really well with his baby mac and cheese. I remember when he first started eating we gave him ridiculously small amounts on the spoon and only gradually increased. Plus we always tilted him way back- either in the crook of my leg or in the reclined high chair. I haven't bothered with either the recline or the gradual. I've been shoving 1/3 to 1/2 spoonfulls (the smaller type baby spoon) to a straight up Oliver since yesterday and he only started eating a few days ago. I actually never did recline him - I was being lazy I guess but I'm glad it's working out- it proves that he's working his tongue better instead of just letting the food slide down. I'm pretty excited but trying not to get too excited just in case. So then instead of giving him a bath- I couldn't handle the screams - and instead of going to bed at a decent hour - I put him in the exersaucer - he loves this toy now! I can visualize a day when I can put him in it and walk into the next room. Nathan gets away with it but one day so will I. =)
So I had to pay for delaying the bedtime - or maybe it was the aggitation of the sound. It took an hour and he was really worked up. I hear him stirring now and he's only been down for 45 minutes so hopefully I can write tomorrow about day 4 of good sleep. We see the accupunturist tomorrow afternoon in case that's the helpful treatment.
Sunday, November 15, 2009
Sunday- day off
I closed the door to his room at 6:45 and didn't see him again until 4 in the morning. Unfortunately I woke about every hour keeping tabs on how long he'd been sleeping. And although it took more than an hour, he went back down for another 2 hours. So when do you nap a kid that's just slept 11 hours?
We watched an old Sesame Street episode with an Elmo's world we hadn't seen before and I tried to get him to nap in preparation for a trip into town. But if you've slept 11 hours do you really need a morning nap? So instead I tried to get him to say "ma" on purpose and gave that up too. He was good in town but then I knew we needed to come back to eat and try for a nap. He had fun eating but his nap was only 30 minutes. Then I didn't know what to do with him. We tried going for a walk. The best part about the walk was a pretty stream that flowed over some rocks coming down the hill and going under the road we were walking on. So we stopped to look directly up at the water as it flowed down this hill. He really enjoyed that - it was so cute. And back at home I resorted to elmo after he was tired of his toys.
I got distracted at bedtime having him roll and play on the bed. He did a lot of good strength training stuff =) I'll have to figure out a way to mimic this setup at home. I'm really looking forward to being home. I got him down a little late - after 7 - so I hope for another good night of sleep.
We watched an old Sesame Street episode with an Elmo's world we hadn't seen before and I tried to get him to nap in preparation for a trip into town. But if you've slept 11 hours do you really need a morning nap? So instead I tried to get him to say "ma" on purpose and gave that up too. He was good in town but then I knew we needed to come back to eat and try for a nap. He had fun eating but his nap was only 30 minutes. Then I didn't know what to do with him. We tried going for a walk. The best part about the walk was a pretty stream that flowed over some rocks coming down the hill and going under the road we were walking on. So we stopped to look directly up at the water as it flowed down this hill. He really enjoyed that - it was so cute. And back at home I resorted to elmo after he was tired of his toys.
I got distracted at bedtime having him roll and play on the bed. He did a lot of good strength training stuff =) I'll have to figure out a way to mimic this setup at home. I'm really looking forward to being home. I got him down a little late - after 7 - so I hope for another good night of sleep.
Saturday, November 14, 2009
Day 12 - Sat - 11 hours of night sleep & plenty of energy
So he woke up twice but it was still almost 11 hours of sleep. He didn't get up until 7:30 which left me a little time to be awake before he woke up- always a treat.
1st - I guess I had told everyone in the first dive how he slept so much- everyone else is having trouble with their kids being wired and not sleeping but Oliver's sleep was more impressive than the others. And I told them about the accupuntuce. I left the center to come back and do stuff at the apartment and when I returned they were exiting the chamber. Several people exclaimed as soon as they saw me that he had made this huge turnaround (or whatever term they used). This of course intrigued the group in the 2nd time slot for the 1st dive - they were sitting around waiting - so I told them all about the accupuncture and sleep too.
No sound today- we just do 5 days a week for 2 weeks. I'm glad. All the other parents "blame" the sound for making their kids super hyper. One mom said that hers woke up at 2am to start the day. They all seemed to be affected after the same sound session.
Oliver didn't appear to want to nap but I brought him home after playing on the floor at the center and got a short 30 minute nap. I hate it when you're all set up for sleep and nature calls. 3 times. And so although you started the nap with plenty of time you end up cutting it close. I guess it doesn't matter when you have a power napper. He almost always wakes up with plenty of time to get to the next dive. And I wonder if he isn't doing better in the digestive department - he's been a night pooper recently so this day thing is probably better all around.
2nd - he wasn't as well behaved. They started with an elmo that he was tired of and who knows what makes a difference. We sat around after talking to the 2nd group and that was nice. I got another idea for a therapy to try in DC while we're up there next month. Better to do it then so I can be all finished for a while like I've been planning.
I brought him home to get him fed and he was so playful and not at all tired. I couldn't make myself try a nap- it's torture for me too. So instead we took our time eating and played in the high chair. Then we moved to the exersaucer where I swear he played for at least an hour! 20+ minutes was trying to pick up puffs from the food tray on the exersaucer - he spun all around checking out the different toys and at one point, for some reason, I removed a toy- they clip into holes in the unit. He discovered the hole and was trying to look down through it to see what was in there. It was the first time I've seen him really try to peer into something and/or understand what he's looking at. I put buster the duck under there to play peekabo and he thought that was hilarious. Finally I took him out to go for a walk.
The walk never happened because we were also on a mission to get some raw milk. There was a slight problem with the glass jars of the gallons brought to us from home and so we are short 2 gallons. A technician drew us a great map - all her maps are great but not to scale and so I didn't realize how long it would take to get there. We got the milk but it was late/getting dark by then. I had sworn the night before to start getting him to bed sooner so we got home for bath/meal time around 5:45. His bath tonight was absolutely horrific. If we hadn't known the neighbors I think they might have called the police on me. It was really awful- he's never acted half this bad at a bathtime before. I don't know what his problem was. It was all I could do to keep him in the tub (sits over the sink kind - yes he's too big for it but it's the best method I have). He seemed so upset by it that I'm not sure what I'll do if it keeps up. The early start to bedtime was again stalled by nature's call and I finally had him down at 6:45 after just 25 minutes of fussiness- not too bad. We'll see how the night goes. If it's another good one then I might just be advertising the benefits of accupunture (or...)
1st - I guess I had told everyone in the first dive how he slept so much- everyone else is having trouble with their kids being wired and not sleeping but Oliver's sleep was more impressive than the others. And I told them about the accupuntuce. I left the center to come back and do stuff at the apartment and when I returned they were exiting the chamber. Several people exclaimed as soon as they saw me that he had made this huge turnaround (or whatever term they used). This of course intrigued the group in the 2nd time slot for the 1st dive - they were sitting around waiting - so I told them all about the accupuncture and sleep too.
No sound today- we just do 5 days a week for 2 weeks. I'm glad. All the other parents "blame" the sound for making their kids super hyper. One mom said that hers woke up at 2am to start the day. They all seemed to be affected after the same sound session.
Oliver didn't appear to want to nap but I brought him home after playing on the floor at the center and got a short 30 minute nap. I hate it when you're all set up for sleep and nature calls. 3 times. And so although you started the nap with plenty of time you end up cutting it close. I guess it doesn't matter when you have a power napper. He almost always wakes up with plenty of time to get to the next dive. And I wonder if he isn't doing better in the digestive department - he's been a night pooper recently so this day thing is probably better all around.
2nd - he wasn't as well behaved. They started with an elmo that he was tired of and who knows what makes a difference. We sat around after talking to the 2nd group and that was nice. I got another idea for a therapy to try in DC while we're up there next month. Better to do it then so I can be all finished for a while like I've been planning.
I brought him home to get him fed and he was so playful and not at all tired. I couldn't make myself try a nap- it's torture for me too. So instead we took our time eating and played in the high chair. Then we moved to the exersaucer where I swear he played for at least an hour! 20+ minutes was trying to pick up puffs from the food tray on the exersaucer - he spun all around checking out the different toys and at one point, for some reason, I removed a toy- they clip into holes in the unit. He discovered the hole and was trying to look down through it to see what was in there. It was the first time I've seen him really try to peer into something and/or understand what he's looking at. I put buster the duck under there to play peekabo and he thought that was hilarious. Finally I took him out to go for a walk.
The walk never happened because we were also on a mission to get some raw milk. There was a slight problem with the glass jars of the gallons brought to us from home and so we are short 2 gallons. A technician drew us a great map - all her maps are great but not to scale and so I didn't realize how long it would take to get there. We got the milk but it was late/getting dark by then. I had sworn the night before to start getting him to bed sooner so we got home for bath/meal time around 5:45. His bath tonight was absolutely horrific. If we hadn't known the neighbors I think they might have called the police on me. It was really awful- he's never acted half this bad at a bathtime before. I don't know what his problem was. It was all I could do to keep him in the tub (sits over the sink kind - yes he's too big for it but it's the best method I have). He seemed so upset by it that I'm not sure what I'll do if it keeps up. The early start to bedtime was again stalled by nature's call and I finally had him down at 6:45 after just 25 minutes of fussiness- not too bad. We'll see how the night goes. If it's another good one then I might just be advertising the benefits of accupunture (or...)
Summary and Behavioral Notes- Week 2
There isn't just one time in Oliver's recent past to make comparisons to. There is August- where he was sleeping up to 9 hours at a time at night, napping pretty regularly twice a day, eating the average amount for his age, not startling easily, no reflux and keeping straight legs when he walked. Then, there is October- where he had quit eating and sleeping, eyes were back to crossing, legs crossed when he walked, he startled easily and the reflux was bad. In comparing I want to make sure to keep both dates in mind- August-good vs October- not so good.
Sleep - better than October, doesn't take as long to get him to fall asleep and it's easier to put him down once he is asleep- this is still on and off again but overall better than Oct - not as good as Aug yet.
Eyes- still crossing equally and the same amount as the start of this treatment
Hands- pretty equal - this is better than the start of treatment and quite possibly ready to surpass the amount in August
Eating- much better than Oct (non-existent) and when compared to August, although it's much less food he's consuming I believe he's using a better, more appropriate, more coordinated movement. His lips are closed and his tongue does more work. I think the method is better than Aug and we've only been at it for a few days now.
Legs- kicking a whole lot more - I'm teaching him to use them to move - he's moving them more than in August even but he still scissors them when he walks
Hips- not noted in previous summaries but his hips are either more flexible or more trained to move in a more complete range of motion - this is much improved to August even and has allowed him to roll more easily and much more frequently- all good except now he is at risk for throwing himself off beds and such
Arms- jury is still out- the chamber today swore that he waved to elmo- this is the up and down movement that I've been hoping for - where he can wave, ask to be picked up and get to toys easier- this is different from the bent elbow movement that I would also like to see but it's a good one to have - I would have to say though that it's better movement than Oct and I'm working hard to teach him to raise them up using verbal commands and repeated situations where it's necessary (putting on the high chair tray, picking him up etc)
Awareness- update from week 1 - he no longer cries when we get to the building for the treatments and he can be happy in the presence of the technicians as long as they aren't holding the implements that make him so upset- oxygen hood, thermometer or ear checking device (does that have a specific name??)
Crawl- still upset after just a second or two in crawl position - especially if not well supported- this has been his habit since he picked up on walking and is causing him a little trouble since his rolling is getting him over in a stuck crawl position more often - training on the bed doesn't produce the same frustration because gravity and his tendency to push with his arms more lets him fall into a standing position. He hasn't translated this to being flat on his belly and won't use his arms to push up but it's still new
Reflux - is gone - prevacid must be working
Verbal- jury still out- wish to hear some sort of noises on purpose - he is making plenty of noise- same as both Oct and Aug I would say
Mood- playing longer with toys- having more fun using his body in new ways- roll, grab, exersaucer, etc - more independent play- although I use the term independent very loosely - better than Aug even
Things I am actively trying to teach him: voice commands for things I want him to do/not to do - "up" to get him to raise up his hands, "open" to get him to open his hands, "no no" to get him to stop his ATNR (see below for explanation), rolling/using his body to move from one place to another, singing/talking, additional words for his life- mama's baby- he needs to be warned right?, talking (on phone, to toys, etc), chew, walk vs stroller, how I can do something and so can he (or bunny or glowworm etc) and some signs- for all done and more right now - um- that's all I can think of right now but my point was that we're working on a ton of things right now and so we're really pushing his ability to learn and hopefully these treatments are assisting me with all this stuff.
ATNR- Asymetrical Tonic Neck Reflex -meant for babies and meant to go away - has not for Oliver. When angry he'll throw his straight left arm out and back, bend his right elbow and hold his hand at his right ear and crank his head to the right. This reflex prevents him from doing a lot of things- prevents him from falling asleep for one - it keeps him cranked up, tight and angry - when "broken" of the posture (reflexive posture) he is more calm. It also prevents him from rolling to his right side since his left arm is stuck out straight in the opposite direction that he wants to move. If I tap it saying 'no no" then he can pull it in towards his head, towards his right side and roll easily in that direction. It's not his only remaining baby reflex (common problem in CP) but it's one that I know how to help him stop.
Sleep - better than October, doesn't take as long to get him to fall asleep and it's easier to put him down once he is asleep- this is still on and off again but overall better than Oct - not as good as Aug yet.
Eyes- still crossing equally and the same amount as the start of this treatment
Hands- pretty equal - this is better than the start of treatment and quite possibly ready to surpass the amount in August
Eating- much better than Oct (non-existent) and when compared to August, although it's much less food he's consuming I believe he's using a better, more appropriate, more coordinated movement. His lips are closed and his tongue does more work. I think the method is better than Aug and we've only been at it for a few days now.
Legs- kicking a whole lot more - I'm teaching him to use them to move - he's moving them more than in August even but he still scissors them when he walks
Hips- not noted in previous summaries but his hips are either more flexible or more trained to move in a more complete range of motion - this is much improved to August even and has allowed him to roll more easily and much more frequently- all good except now he is at risk for throwing himself off beds and such
Arms- jury is still out- the chamber today swore that he waved to elmo- this is the up and down movement that I've been hoping for - where he can wave, ask to be picked up and get to toys easier- this is different from the bent elbow movement that I would also like to see but it's a good one to have - I would have to say though that it's better movement than Oct and I'm working hard to teach him to raise them up using verbal commands and repeated situations where it's necessary (putting on the high chair tray, picking him up etc)
Awareness- update from week 1 - he no longer cries when we get to the building for the treatments and he can be happy in the presence of the technicians as long as they aren't holding the implements that make him so upset- oxygen hood, thermometer or ear checking device (does that have a specific name??)
Crawl- still upset after just a second or two in crawl position - especially if not well supported- this has been his habit since he picked up on walking and is causing him a little trouble since his rolling is getting him over in a stuck crawl position more often - training on the bed doesn't produce the same frustration because gravity and his tendency to push with his arms more lets him fall into a standing position. He hasn't translated this to being flat on his belly and won't use his arms to push up but it's still new
Reflux - is gone - prevacid must be working
Verbal- jury still out- wish to hear some sort of noises on purpose - he is making plenty of noise- same as both Oct and Aug I would say
Mood- playing longer with toys- having more fun using his body in new ways- roll, grab, exersaucer, etc - more independent play- although I use the term independent very loosely - better than Aug even
Things I am actively trying to teach him: voice commands for things I want him to do/not to do - "up" to get him to raise up his hands, "open" to get him to open his hands, "no no" to get him to stop his ATNR (see below for explanation), rolling/using his body to move from one place to another, singing/talking, additional words for his life- mama's baby- he needs to be warned right?, talking (on phone, to toys, etc), chew, walk vs stroller, how I can do something and so can he (or bunny or glowworm etc) and some signs- for all done and more right now - um- that's all I can think of right now but my point was that we're working on a ton of things right now and so we're really pushing his ability to learn and hopefully these treatments are assisting me with all this stuff.
ATNR- Asymetrical Tonic Neck Reflex -meant for babies and meant to go away - has not for Oliver. When angry he'll throw his straight left arm out and back, bend his right elbow and hold his hand at his right ear and crank his head to the right. This reflex prevents him from doing a lot of things- prevents him from falling asleep for one - it keeps him cranked up, tight and angry - when "broken" of the posture (reflexive posture) he is more calm. It also prevents him from rolling to his right side since his left arm is stuck out straight in the opposite direction that he wants to move. If I tap it saying 'no no" then he can pull it in towards his head, towards his right side and roll easily in that direction. It's not his only remaining baby reflex (common problem in CP) but it's one that I know how to help him stop.
Answers to common questions
I'll keep adding answers as I get the questions
How many sessions of Oxygen? It's most beneficial to do at least 40 all at once. Here they do 2 a day for 6 days a week.
How many sessions of Sound? 20 Sessions- Twice a day for 5 days - 2 off then 5 more days the next week.
When are we finished? We'll get back the day before Thanksgiving
How many sessions of Oxygen? It's most beneficial to do at least 40 all at once. Here they do 2 a day for 6 days a week.
How many sessions of Sound? 20 Sessions- Twice a day for 5 days - 2 off then 5 more days the next week.
When are we finished? We'll get back the day before Thanksgiving
Day 11- Friday - power napper & accupuncture
Oliver is reinventing the power nap. You can expect his new book- Power Napping for Infants - Why 10 minutes IS enough - due out next June. And my new book - How to Deal if your child never Naps- due out never. Why hasn't someone written this book? Maybe because they are too tired to get around to it!
But Nathan was here and I did take 2 naps on Thursday. I feel like I've been leaving off some very important information. I think about it while putting Oliver down for bed and then forget about it before I get to post. I'll do another weekly update tonight or tomorrow. I'm most excited about his eating, his rolling (the falling off the bed game- see you tube), and I feel like I can finally start to teach him some things- like following commands. If he can't figure out on his own how to roll to move then I believe that I can teach him since he understands so many words.
1st Dive/Sound- Normal- kept him from napping during sound to get a nap at home- 10 minute power nap
So we played and ate and that was fun.
2nd Dive/Sound- I had already headed to Boone but Nathan said he got one power nap during sound and one more in the car on the way to Boone.
While looking for a pediatric chiropractor I found a chiro/accupunturist in Boone and we had an appointment immediately following the 2nd session. I got to go up early and piddle around a bit- they have an EarthFare and TJ max and other fun places. We met at the office and with no real naps to speak of Oliver was worse than even I expected. Who can blame him though - it's just another person coming to mess with him. She took his pulses (these are different than medical heart rate pulse) and said he was off on this and that (hard to hear over the crying) and she used her bright green laser light to hit no less than 20 points on Oliver's body. Of course it didn't hurt but anyone outside the door wouldn't have believed that. Once Nathan got him out of the room he was fine. I tried to have a conversation with the doctor- we set up for us to come back a few more times while we're here. I've heard of parents trying to treat their child with CP with accupunture so I thought since it's more local than any place back home we should try it while we're here. I asked her if I should expect anything and she said it's hard to know. And if we don't see anything then we'll scrap the idea and not look for another doctor back home.
Nathan and I had planned to go to dinner before he left town and I was very worried about Oliver being a menace in the restaurant but somehow he was in a good enough mood and dinner was nice. He yawned a bit on the way home (40 minute drive) and was still alright when we stopped at the grocery store for baby food. He recognized the puff container which was so cute. He used to LOVE puffs. (Puffs-those cheerio type baby things that I used to make fun of but love because they melt a heck of a lot faster than cheerios.) I even took time to feed him baby food when we got home and we had the usual bedtime of 7:15. At 8:30 when the neighbors came in I noticed that his sound machine had cut off- it shorts out sometimes and just stops and starts again. I was able to sneak in to restart it and cuddle him for a minute and he fell right back asleep. Just in case I headed off to bed early too but Nathan will be back in 5 days this time instead of 7 like last week.
But Nathan was here and I did take 2 naps on Thursday. I feel like I've been leaving off some very important information. I think about it while putting Oliver down for bed and then forget about it before I get to post. I'll do another weekly update tonight or tomorrow. I'm most excited about his eating, his rolling (the falling off the bed game- see you tube), and I feel like I can finally start to teach him some things- like following commands. If he can't figure out on his own how to roll to move then I believe that I can teach him since he understands so many words.
1st Dive/Sound- Normal- kept him from napping during sound to get a nap at home- 10 minute power nap
So we played and ate and that was fun.
2nd Dive/Sound- I had already headed to Boone but Nathan said he got one power nap during sound and one more in the car on the way to Boone.
While looking for a pediatric chiropractor I found a chiro/accupunturist in Boone and we had an appointment immediately following the 2nd session. I got to go up early and piddle around a bit- they have an EarthFare and TJ max and other fun places. We met at the office and with no real naps to speak of Oliver was worse than even I expected. Who can blame him though - it's just another person coming to mess with him. She took his pulses (these are different than medical heart rate pulse) and said he was off on this and that (hard to hear over the crying) and she used her bright green laser light to hit no less than 20 points on Oliver's body. Of course it didn't hurt but anyone outside the door wouldn't have believed that. Once Nathan got him out of the room he was fine. I tried to have a conversation with the doctor- we set up for us to come back a few more times while we're here. I've heard of parents trying to treat their child with CP with accupunture so I thought since it's more local than any place back home we should try it while we're here. I asked her if I should expect anything and she said it's hard to know. And if we don't see anything then we'll scrap the idea and not look for another doctor back home.
Nathan and I had planned to go to dinner before he left town and I was very worried about Oliver being a menace in the restaurant but somehow he was in a good enough mood and dinner was nice. He yawned a bit on the way home (40 minute drive) and was still alright when we stopped at the grocery store for baby food. He recognized the puff container which was so cute. He used to LOVE puffs. (Puffs-those cheerio type baby things that I used to make fun of but love because they melt a heck of a lot faster than cheerios.) I even took time to feed him baby food when we got home and we had the usual bedtime of 7:15. At 8:30 when the neighbors came in I noticed that his sound machine had cut off- it shorts out sometimes and just stops and starts again. I was able to sneak in to restart it and cuddle him for a minute and he fell right back asleep. Just in case I headed off to bed early too but Nathan will be back in 5 days this time instead of 7 like last week.
Friday, November 13, 2009
Day 10 - Half-way there
It was great having Nathan here last night because Oliver chose this night to be a lot of trouble. He woke up super early on top of his bad night of sleep. When he does that he doesn't wake up quite early enough to go down for a nap before the first dive and it throws everything off.
1st Dive-
Sound- Fell asleep but woke up when the sound went off and he heard another boy
So we didn't even try to get him back down for a nap - it wouldn't work but he does need more sleep. We played at the apartment until it was time to go back.
2nd- same as the first except for the sound we decided to keep him awake so that he would take a better nap at home. There was an alphabet toy- it was wood with each letter on a block that was on a dowell rod and spun around and he played with that for 20 minutes. I've never seen a toy hold his attention for so long.
Instead of a nap at home though Nathan decided to take him for a hike. That gave me several hours to... I can't remember what I did but it was nice to have peace and quiet. I'm sure I napped. And then we all ate dinner together and got Oliver ready for bed. He's been falling asleep still around 7:15 and waking around 5:15 with a few times up just to be comforted and one time up for milk. Nathan went in to get him around 11 and said he had slid halfway off the bed. I had him propped on pillows even though his reflux is gone - it's just easier for me to get away once I lay him down. Now that he's moving more we'll have to be more careful but of course the bed it just a mattress on the floor so falling off of it doesn't mean too much.
Nathan and I had a chance to catch up and watch the movie Up and we're heading to Boone Friday for dinner before he has to leave again.
1st Dive-
Sound- Fell asleep but woke up when the sound went off and he heard another boy
So we didn't even try to get him back down for a nap - it wouldn't work but he does need more sleep. We played at the apartment until it was time to go back.
2nd- same as the first except for the sound we decided to keep him awake so that he would take a better nap at home. There was an alphabet toy- it was wood with each letter on a block that was on a dowell rod and spun around and he played with that for 20 minutes. I've never seen a toy hold his attention for so long.
Instead of a nap at home though Nathan decided to take him for a hike. That gave me several hours to... I can't remember what I did but it was nice to have peace and quiet. I'm sure I napped. And then we all ate dinner together and got Oliver ready for bed. He's been falling asleep still around 7:15 and waking around 5:15 with a few times up just to be comforted and one time up for milk. Nathan went in to get him around 11 and said he had slid halfway off the bed. I had him propped on pillows even though his reflux is gone - it's just easier for me to get away once I lay him down. Now that he's moving more we'll have to be more careful but of course the bed it just a mattress on the floor so falling off of it doesn't mean too much.
Nathan and I had a chance to catch up and watch the movie Up and we're heading to Boone Friday for dinner before he has to leave again.
Wednesday, November 11, 2009
Day 9 - Wednesday
Well, the sleep last night wasn't anything to be excited about. And I'm not a huge fan of 5 in the morning so at least Sesame Street is on at that time.
1st Dive - good- they are all pretty much good now. I'll only note from here on out if there is anything different, good or ortherwise, or if his ears are any worse. He is still a grade 2 or better so I think we'll make it through.
Sound- he fell asleep and then someone in the next room slammed a door or something so that was only about a 15 minute nap.
2nd Dive -
Sound- He fell asleep soon into this one and I could hear on the other headphones (his is much softer so I can't hear his) that it was pretty normal sounding music and some of it relaxing. But that only gave us a 20 minute nap.
I tried for more napping back at the apartment but that has never worked. Once he's up, he's up. So I gave up and decided we could go into town for a few things. I bought some things for the apartment to help them update their collection. The teflon pans had teflon flaking off- a bit toxic I think. They didn't ask us to pay the utilities fees this month so I thought I would go ahead and get a few things in appreciation. The other parents have been doing the same thing. He was alright in town but looked a little pale and sleepy of course.
Bedtime wasn't too hard since he as so tired and I've been staying up later than usual to clean and put away all the new kitchen/house stuff since I know the reinforcements are arriving tonight (nathan). I'm pretty exhausted. I think I'm a lot like these kids here for treatment- I really thrive on my usual schedule and this is just strange for me. Oliver has adjusted just fine and so have I but I can't wait until Thanksgiving to be home again and we'll even have Nathan's parents there to help us celebrate (and just to help us).
Tomorrow is the half-way point!
1st Dive - good- they are all pretty much good now. I'll only note from here on out if there is anything different, good or ortherwise, or if his ears are any worse. He is still a grade 2 or better so I think we'll make it through.
Sound- he fell asleep and then someone in the next room slammed a door or something so that was only about a 15 minute nap.
2nd Dive -
Sound- He fell asleep soon into this one and I could hear on the other headphones (his is much softer so I can't hear his) that it was pretty normal sounding music and some of it relaxing. But that only gave us a 20 minute nap.
I tried for more napping back at the apartment but that has never worked. Once he's up, he's up. So I gave up and decided we could go into town for a few things. I bought some things for the apartment to help them update their collection. The teflon pans had teflon flaking off- a bit toxic I think. They didn't ask us to pay the utilities fees this month so I thought I would go ahead and get a few things in appreciation. The other parents have been doing the same thing. He was alright in town but looked a little pale and sleepy of course.
Bedtime wasn't too hard since he as so tired and I've been staying up later than usual to clean and put away all the new kitchen/house stuff since I know the reinforcements are arriving tonight (nathan). I'm pretty exhausted. I think I'm a lot like these kids here for treatment- I really thrive on my usual schedule and this is just strange for me. Oliver has adjusted just fine and so have I but I can't wait until Thanksgiving to be home again and we'll even have Nathan's parents there to help us celebrate (and just to help us).
Tomorrow is the half-way point!
Tuesday, November 10, 2009
Day 8 - rain & sleep
It's raining here- maybe that's why he's slept well. Who knows why he ever sleeps well. He basically slept from 7 to 5, waking once for just 30 minutes. Then because he got up early, after an hour he went back down for a nap for 45 minutes.
1st Dive- His ears are still doing alright and his dive went well. We always do the sound thing after the dive so we moved right into that room and he didn't fall asleep this time since he had already napped. We played after the sound - as we did last week. He is definitely rolling easier and I noticed that his top leg is more able to swing all the way over, in the way needed to roll over onto his stomach. It's not flawless or anything- he still struggles at it sometimes but he's getting much better. He has a lot of fun with this so that makes him happy. He's a squirmy one now. It's strange to finally have that baby that rolls to the side getting away during the diaper changes. And I actually have to place him in the middle of the bed because he'll work hard to get himself off the edge thanks to my bizarre game. I'm proud of him though. He seemed tired so we went back to the apartment to try for a nap - which we actually got! 30 minutes- which was just barely short enough to get us back for the 2nd dive.
2nd Dive- We were so rushed to get here, change a diaper, feed him a little etc before going in. He did well even though they weren't watching elmo the whole time. We did the sound thing and then played on the floor. I would have liked to go for a walk but with the rain and the closest town 20 minutes away we just came back to the apartment.
I got him to nap again - very short and then I had to figure out ways to entertain us. We watched laughing babies on you tube- and he laughed at them laughing- it was pretty funny. Then I found videos of babies jumping in their jumper things and put Oliver in his to copy the other babies. That worked for a short while. We watched some elmo and then used the elmo walker up and down the hallway.
It took over an hour for him to fall asleep tonight. He was having such a hard time just giving in to sleep although I was sure he was tired. The sound/AIT and the nasonex can get in the way of sleep. I don't think his ears were bothering him or anything. Finally he fell asleep sort of bent over in my arms instead of a reclined position. He used to need that position for security. I haven't needed to do that for him in a long time. But then he was pretty easy to put down. (not always the case on difficult nights) Again, I'm feeling the early bedtime just in case. I'm pretty tired of the solo night thing. Can't wait until Nathan can help on Thursday night.
1st Dive- His ears are still doing alright and his dive went well. We always do the sound thing after the dive so we moved right into that room and he didn't fall asleep this time since he had already napped. We played after the sound - as we did last week. He is definitely rolling easier and I noticed that his top leg is more able to swing all the way over, in the way needed to roll over onto his stomach. It's not flawless or anything- he still struggles at it sometimes but he's getting much better. He has a lot of fun with this so that makes him happy. He's a squirmy one now. It's strange to finally have that baby that rolls to the side getting away during the diaper changes. And I actually have to place him in the middle of the bed because he'll work hard to get himself off the edge thanks to my bizarre game. I'm proud of him though. He seemed tired so we went back to the apartment to try for a nap - which we actually got! 30 minutes- which was just barely short enough to get us back for the 2nd dive.
2nd Dive- We were so rushed to get here, change a diaper, feed him a little etc before going in. He did well even though they weren't watching elmo the whole time. We did the sound thing and then played on the floor. I would have liked to go for a walk but with the rain and the closest town 20 minutes away we just came back to the apartment.
I got him to nap again - very short and then I had to figure out ways to entertain us. We watched laughing babies on you tube- and he laughed at them laughing- it was pretty funny. Then I found videos of babies jumping in their jumper things and put Oliver in his to copy the other babies. That worked for a short while. We watched some elmo and then used the elmo walker up and down the hallway.
It took over an hour for him to fall asleep tonight. He was having such a hard time just giving in to sleep although I was sure he was tired. The sound/AIT and the nasonex can get in the way of sleep. I don't think his ears were bothering him or anything. Finally he fell asleep sort of bent over in my arms instead of a reclined position. He used to need that position for security. I haven't needed to do that for him in a long time. But then he was pretty easy to put down. (not always the case on difficult nights) Again, I'm feeling the early bedtime just in case. I'm pretty tired of the solo night thing. Can't wait until Nathan can help on Thursday night.
You tube
I post under cheather111 - that's probably the easiest way to search for Oliver's videos. I just put a bunch on there.
Sound Harmonics- AIT
I'm not sure where I got the term sound harmonics but the official name is AIT or Auditory Integration Training. Again, it would be better maybe to get the offical info from some reputable source. I'm just going to attempt to give a summary of what I know. Basically I didn't know anything about it and usually they don't perform it on anyone under 18 months of age. I didn't realize exactly what it was but signed up anyway since they were going to allow us and then have been learning about it since.
Basics- the person puts on headphones for 30 minutes - twice a day - for 20 sessions total. This can usually cost up to $1200 or more since the equipment is so expensive. We are offered it for free here. Created by Dr. Tomatis of France in the 1960s and altered to our current method by Dr. Berard, who studied under Tomatis, it was intended to help children who had difficulty learning in school.
It relies on specially designed equipment that randomizes and filters high and low frequency sounds and intensity levels. It is believed that some people do not hear all frequencies equally and this causes them trouble in a lot of different ways. By exposing the person to varied, inconsistent levels of noise it has a sensory stimulation quality that can reduce hypersensitivity long term. It is unknown exactly how the AIT will affect each person and there are limited explanations for why it works.
Possible benefits include: improved attention to auditory stimuli and comprehension, social behavior, awareness and communication as well as decreased sensitivity to sounds, impulsivity, distractibility, irritability and lethargy.
This treatment is more known in the autistic world but is also seen as helpful for those with sensory integration disorder- a part of the diagnosis or CP, autism, ADHD and otherwise undiagnosed individuals.
Precautions- once treatment has begun there is no skipping of session- all sessions must be completed together at one time. After treatment- or even partial treatment, if it is stopped, patients are not permitted to use the AIT for at least 1 year. Efforts must be taken to avoid loud noises for the first three months afterwards, including fire alarms and rock concerts and are not permitted to wear headphones. Damaging affects to either the hearing or the effectiveness of the treatment are possible if these suggestions are not followed. Behaviors may be changed during and after in a way perceived as negative as the patient adjusts to the changes affecting them. We're encouraged to keep track during and after the time period we do the sessions.
Basics- the person puts on headphones for 30 minutes - twice a day - for 20 sessions total. This can usually cost up to $1200 or more since the equipment is so expensive. We are offered it for free here. Created by Dr. Tomatis of France in the 1960s and altered to our current method by Dr. Berard, who studied under Tomatis, it was intended to help children who had difficulty learning in school.
It relies on specially designed equipment that randomizes and filters high and low frequency sounds and intensity levels. It is believed that some people do not hear all frequencies equally and this causes them trouble in a lot of different ways. By exposing the person to varied, inconsistent levels of noise it has a sensory stimulation quality that can reduce hypersensitivity long term. It is unknown exactly how the AIT will affect each person and there are limited explanations for why it works.
Possible benefits include: improved attention to auditory stimuli and comprehension, social behavior, awareness and communication as well as decreased sensitivity to sounds, impulsivity, distractibility, irritability and lethargy.
This treatment is more known in the autistic world but is also seen as helpful for those with sensory integration disorder- a part of the diagnosis or CP, autism, ADHD and otherwise undiagnosed individuals.
Precautions- once treatment has begun there is no skipping of session- all sessions must be completed together at one time. After treatment- or even partial treatment, if it is stopped, patients are not permitted to use the AIT for at least 1 year. Efforts must be taken to avoid loud noises for the first three months afterwards, including fire alarms and rock concerts and are not permitted to wear headphones. Damaging affects to either the hearing or the effectiveness of the treatment are possible if these suggestions are not followed. Behaviors may be changed during and after in a way perceived as negative as the patient adjusts to the changes affecting them. We're encouraged to keep track during and after the time period we do the sessions.
Monday, November 9, 2009
Treatment Day 7- Monday- Start of Sound Harmonics (AIT)
Oliver went down last night at 7:15 and slept for 6 hours. And I hadn't even given the valium. He still got less than his avg 10 hours of sleep but it was an easier night. There is a chart at the center for how bad ears can look. He was a grade 4 out of 5 on Saturday and this morning the technician that checked him said he looked like a grade 2.
1st Dive- I sent him in with water to help clear his ears and he had garlic oil in them to prevent the canal from closing up with a pressure block and they all said he seemed to do much better. I have to admit I had run back to the apartment. I had stuff to do but also didn't want to hear him cry but they said he was fine. He was pretty happy after the treatment but instead of playing we had to go into the sound room for sound harmonics. I'll do a separate post on it soon. He fell asleep for 20 minutes during and after the sound and I had to wake him because between him sleeping on me and Roo kicking me I just couldn't put off a bathroom break any longer.
We went for a walk along another flat road that I found.
2nd Dive- he again did well with his ears which were still a grade 2 when checked before going in. Our sound session is always after the dive so we went in and this time he was more aggitated but fell asleep at the end and might have had a 30 minute nap.
.
I didn't know what else to do with him for the rest of the day- we drove in the town for more socks. They are so small they're easy to lose. He had a bit of fun tonight with his new game of trying to throw himself off the edge of the bed. It's awful but it's the only way I could think of to teach him to use his body to move places. I put him on the edge, he rolls onto his side and gravity helps prove the point that he's using his body to move. I encourage him to come get me- one of his favorite games - and he's in charge and so proud of himself each time he does it. We danced a little too- he loved watching me doing the hokey pokey along with the elmo video. Maybe I should draw the curtains for such odd displays of child entertainment. He went down quickly although with quite a fuss. I hope we have another decent night of sleep. It's only another 2 days until Nathan comes back to help.
1st Dive- I sent him in with water to help clear his ears and he had garlic oil in them to prevent the canal from closing up with a pressure block and they all said he seemed to do much better. I have to admit I had run back to the apartment. I had stuff to do but also didn't want to hear him cry but they said he was fine. He was pretty happy after the treatment but instead of playing we had to go into the sound room for sound harmonics. I'll do a separate post on it soon. He fell asleep for 20 minutes during and after the sound and I had to wake him because between him sleeping on me and Roo kicking me I just couldn't put off a bathroom break any longer.
We went for a walk along another flat road that I found.
2nd Dive- he again did well with his ears which were still a grade 2 when checked before going in. Our sound session is always after the dive so we went in and this time he was more aggitated but fell asleep at the end and might have had a 30 minute nap.
.
I didn't know what else to do with him for the rest of the day- we drove in the town for more socks. They are so small they're easy to lose. He had a bit of fun tonight with his new game of trying to throw himself off the edge of the bed. It's awful but it's the only way I could think of to teach him to use his body to move places. I put him on the edge, he rolls onto his side and gravity helps prove the point that he's using his body to move. I encourage him to come get me- one of his favorite games - and he's in charge and so proud of himself each time he does it. We danced a little too- he loved watching me doing the hokey pokey along with the elmo video. Maybe I should draw the curtains for such odd displays of child entertainment. He went down quickly although with quite a fuss. I hope we have another decent night of sleep. It's only another 2 days until Nathan comes back to help.
Summary & Behavioral notes Week 1
Mood- is just about the same- ups and downs- laughs and screams
Sleep - same unpredictable pattern although the ear thing probably has made things worse
Hands - I think he's using his left a little more but that might have happened with or without treatments
Legs- still crossing as he walks - no improvements
Eating- more interested I think- but this could be because he's gone so long without eating much
Mellow-ness - Let me change his diaper 3 times in the last two days without screaming about it - he lets other people change him without fussing but I was surprised to get it 3 times
Awareness- this is a good experiment to find out how much he knows/understands - he really does understand what he's about to go through- when he sees the person taking him into the chamber he starts up immediately and when the person comes to check his ears before each dive he's really upset before she even gets to us
Eyes- Still crossing- both - same frequency
Muscles - still as tight
Reflux- although it takes prevacid a few days to kick in (or so I thought) his reflux has been much better since day 2 of starting it up - I can't think of much gagging at all and the spit up thing hasn't happened in a few days at least. It doesn't appear to be interfering with sleep either
Crawl- more likely to want to roll all the way over and rolling to each side easier and quicker
Sleep - same unpredictable pattern although the ear thing probably has made things worse
Hands - I think he's using his left a little more but that might have happened with or without treatments
Legs- still crossing as he walks - no improvements
Eating- more interested I think- but this could be because he's gone so long without eating much
Mellow-ness - Let me change his diaper 3 times in the last two days without screaming about it - he lets other people change him without fussing but I was surprised to get it 3 times
Awareness- this is a good experiment to find out how much he knows/understands - he really does understand what he's about to go through- when he sees the person taking him into the chamber he starts up immediately and when the person comes to check his ears before each dive he's really upset before she even gets to us
Eyes- Still crossing- both - same frequency
Muscles - still as tight
Reflux- although it takes prevacid a few days to kick in (or so I thought) his reflux has been much better since day 2 of starting it up - I can't think of much gagging at all and the spit up thing hasn't happened in a few days at least. It doesn't appear to be interfering with sleep either
Crawl- more likely to want to roll all the way over and rolling to each side easier and quicker
Sunday, November 8, 2009
Sunday- Day Off
When I woke up early this morning I just knew that I had slept for a long time. In fact, I hadn't moved an inch. It made me happy to know that Oliver had slept long enough for me to feel such an obvious sense of time. I checked the clock- it had been a whole 5 hours. Parenting magazines always ask the question: What was one thing no one told you parenthood would be? I had no idea how my expectations would change.
He didn't get enough sleep but he handled it well - and, so did I until nap time. After 45 minutes of trying and him waking as I set him down I was just plain mad. Later in the day however karma made up for it.
We went to Boone for some specific medicines for his ears. He smells like garlic oil and vics vaporub- the sort of combo you don't usually cuddle with but I still can't help myself. I found a nice place to sit down for lunch - a daring concept with no nap yet for the day. He entertained himself for about 20 minutes drinking water from my straw. We were getting back in time to attempt nap number 2. When I got out and shut my door and saw him alseep I was shocked but hurried to get him up the huge flight of stairs. I went straight to his room and put him down in bed and he slept. (the karma part) I got in my bed to nap but instead daydreamed about what other parents might get: putting a kid down for a nap being just that- you put the kid down for a nap- end of story. I wasn't jealous but instead felt my anger justified - it's okay that I'm angry or upset, how couldn't I be. At least I don't take it out on him but it's obviously not his fault. So that nap only lasted 30 minutes but you can't have it all.
He was a bit of a grump from then until bedtime. If the neighbors had been home they might have their own opinions about the amount of grumpiness. I took him to a place that I thought we could hike. It wasn't what I thought and the backpack hiker is a bit awkward even on a non-pregnant body. So I searched the hills for a flat street and we went walking with the stroller. I had to make up for the ice cream I ate and he wasn't going to tolerate much besides elmo which we had just about maxed out for the day. After returning to the car we did max out elmo (with video number 4 for the day) while I talked on the phone. Bedtime now includes this regime of medicines - garlic oil in the ears, motrin, vics on his feet for the cold (which is better although maybe it was allergies and the nasonex is helping that) but he was cute and laughing on an off.
He's been down for 30 minutes now so I'll end this because he might be getting up soon. I couldn't bring myself to start the valium just yet. How will I know if the oxygen is helping him sleep if I do? Another day or so of this and I might be desperate enough.
He didn't get enough sleep but he handled it well - and, so did I until nap time. After 45 minutes of trying and him waking as I set him down I was just plain mad. Later in the day however karma made up for it.
We went to Boone for some specific medicines for his ears. He smells like garlic oil and vics vaporub- the sort of combo you don't usually cuddle with but I still can't help myself. I found a nice place to sit down for lunch - a daring concept with no nap yet for the day. He entertained himself for about 20 minutes drinking water from my straw. We were getting back in time to attempt nap number 2. When I got out and shut my door and saw him alseep I was shocked but hurried to get him up the huge flight of stairs. I went straight to his room and put him down in bed and he slept. (the karma part) I got in my bed to nap but instead daydreamed about what other parents might get: putting a kid down for a nap being just that- you put the kid down for a nap- end of story. I wasn't jealous but instead felt my anger justified - it's okay that I'm angry or upset, how couldn't I be. At least I don't take it out on him but it's obviously not his fault. So that nap only lasted 30 minutes but you can't have it all.
He was a bit of a grump from then until bedtime. If the neighbors had been home they might have their own opinions about the amount of grumpiness. I took him to a place that I thought we could hike. It wasn't what I thought and the backpack hiker is a bit awkward even on a non-pregnant body. So I searched the hills for a flat street and we went walking with the stroller. I had to make up for the ice cream I ate and he wasn't going to tolerate much besides elmo which we had just about maxed out for the day. After returning to the car we did max out elmo (with video number 4 for the day) while I talked on the phone. Bedtime now includes this regime of medicines - garlic oil in the ears, motrin, vics on his feet for the cold (which is better although maybe it was allergies and the nasonex is helping that) but he was cute and laughing on an off.
He's been down for 30 minutes now so I'll end this because he might be getting up soon. I couldn't bring myself to start the valium just yet. How will I know if the oxygen is helping him sleep if I do? Another day or so of this and I might be desperate enough.
Saturday, November 7, 2009
Day 6 - Saturday - Ear Problems
This probably explains why he hasn't slept. Babies have tiny ear canals anyway and they are hard to get to even by force but Oliver's are more than usual so I don't know if they had a very good view until yesterday. The woman that checked him yesterday and today alerted me about the redness so we picked up the nasonex prescription and started him on additional supplements for his cough/cold. Today however she was particularly worried about the redness. She's been in the chamber a lot herself and says that at that stage it's very uncomfortable and sounds are muffled and strange. I added motrin vics vaporub and a garlic oil ear solution to our treatments and hope that he sleeps better since he needs it to heal himself. I took a different approach for his acid reflux today and it worked. He's usually worse when his stomach is empty so I never let it get empty - just kept feeding him a little early and he was doing alright with it. As a result I think he coughed less. It will still be a few days before his new reflux medicine really kicks in and also a few days until the nasonex is working fully. And I thought - heck - since I'm giving the poor child so many medicines anyway I might consider starting back up the valium just so that he gets some sleep. He can't heal if he doesn't sleep and maybe I was being too perfectionistic to try to get him off the meds before/during all this new stuff. I hope to still be able to see results of this treatment even if we have to get help for sleep during it.
Well I had to stop writing to go in for him - just 30 minutes after falling asleep - same as last night. I'd better get to bed again early in case it's a rough one.
1st Dive- did alright and was cuddly/lethargic afterwards and napped for 40 minutes back at the apartment
2nd Dive- was a little more fussy while the pressure was increasing and again cuddly instead of energetic afterwards. I've heard people say that for some it makes them really hyped up and other really tired. I guess he's gone through both now. He played back at the apartment and then took a small 30 minute nap.
We headed into the town of West Jefferson for baby motrin and he got very upset when I put him in the car. I think he associates it now with his treatments. 12 treatments out of 40 finished.
Well I had to stop writing to go in for him - just 30 minutes after falling asleep - same as last night. I'd better get to bed again early in case it's a rough one.
1st Dive- did alright and was cuddly/lethargic afterwards and napped for 40 minutes back at the apartment
2nd Dive- was a little more fussy while the pressure was increasing and again cuddly instead of energetic afterwards. I've heard people say that for some it makes them really hyped up and other really tired. I guess he's gone through both now. He played back at the apartment and then took a small 30 minute nap.
We headed into the town of West Jefferson for baby motrin and he got very upset when I put him in the car. I think he associates it now with his treatments. 12 treatments out of 40 finished.
Day 5- Friday
I'm already losing track of the days. It's so strange to be living in an apartment far from everything.
1st Dive- he came out lethargic and sleepy. This was the first time he wasn't really energized. We're watching a teeny bit of a runny nose. We'll pick up some medicines at the store to help with it. Nasonex for possible ear problems- pressure and redness. They suggest it for each person even before starting treatments. We had seen a Hyperbaric Pediatrician for approval for these treatments so she had already written a prescription for him just in case. If a cold turns into bad sinus pressure or congestion then going into a pressurized tank can feel like torture to the ears and they would want us to stop. We can't stop because when would we have time to come back to finish it? 40 treatments is sort of the minimum they suggest for effectiveness too.
Nap- 1 hour
2nd Dive - he's definitely onto us. But he's also not acting quite himself today. He's more sleepy/lethargic and fussed a lot more going into the chamber even though he was rested. Luckily they were watching elmo and it turned out alright.
Didn't get the afternoon nap and didn't play on the floor after the session because we had to bring Sarah home. We went into town and although he was sleepy he didn't nap in the car- no surprise. He once (recently) rode in a car from 2am until 3pm the next day and slept maybe 2 hours in that more than 12 hour time period.
Getting him to sleep was actually easy- not pain-free - plenty of crying - but it lasted a short amount of time. He woke up after 30 minutes and continued in this awful pattern of waking up frequenty until I had to wake him up for our earlier than usual session at 7.
He had the whole day off of all reflux meds. Out of curiosity to how bad the acid reflux was I didn't overlap the meds as suggested. I think it was more than obvious that he still needs them.
1st Dive- he came out lethargic and sleepy. This was the first time he wasn't really energized. We're watching a teeny bit of a runny nose. We'll pick up some medicines at the store to help with it. Nasonex for possible ear problems- pressure and redness. They suggest it for each person even before starting treatments. We had seen a Hyperbaric Pediatrician for approval for these treatments so she had already written a prescription for him just in case. If a cold turns into bad sinus pressure or congestion then going into a pressurized tank can feel like torture to the ears and they would want us to stop. We can't stop because when would we have time to come back to finish it? 40 treatments is sort of the minimum they suggest for effectiveness too.
Nap- 1 hour
2nd Dive - he's definitely onto us. But he's also not acting quite himself today. He's more sleepy/lethargic and fussed a lot more going into the chamber even though he was rested. Luckily they were watching elmo and it turned out alright.
Didn't get the afternoon nap and didn't play on the floor after the session because we had to bring Sarah home. We went into town and although he was sleepy he didn't nap in the car- no surprise. He once (recently) rode in a car from 2am until 3pm the next day and slept maybe 2 hours in that more than 12 hour time period.
Getting him to sleep was actually easy- not pain-free - plenty of crying - but it lasted a short amount of time. He woke up after 30 minutes and continued in this awful pattern of waking up frequenty until I had to wake him up for our earlier than usual session at 7.
He had the whole day off of all reflux meds. Out of curiosity to how bad the acid reflux was I didn't overlap the meds as suggested. I think it was more than obvious that he still needs them.
Friday, November 6, 2009
Day 4 - TR - theme is: no sleep
Just a disclaimer about the treatments- Oliver has always gone back and forth with his behaviors and patterns. That day of good sleep could have happened at any point - we were just hoping it was related to the treatments.
1st Dive- with Jessica again - he wasn't so happy but Elmo wasn't involved
we played for a bit after the session but he was a little grumpier
30 minutes nap I think after the session
2nd Dive- same as the first
Nap - same or less than the first nap
Night time Sleep- I knew it wasn't going to go well- there was that 50/50 chance that since he didn't sleep he would sleep well but I knew better. If I had a dime for every person that said - Oh- since he didn't sleep he'll sleep well for you at the next nap/sleep time. Or a dime for every time that he didn't in fact sleep well after not sleeping the previous times. Ugh. So after an hour of the good 'ol screaming before bed routine he was out - and then up again for an hour and then out for a while. I know it's crazy but I'll go to bed sometimes as early as 8:30 if I know we're in for a rough one. Besides, the soup kitchen below our apartment revs up for the day at 5am!
1st Dive- with Jessica again - he wasn't so happy but Elmo wasn't involved
we played for a bit after the session but he was a little grumpier
30 minutes nap I think after the session
2nd Dive- same as the first
Nap - same or less than the first nap
Night time Sleep- I knew it wasn't going to go well- there was that 50/50 chance that since he didn't sleep he would sleep well but I knew better. If I had a dime for every person that said - Oh- since he didn't sleep he'll sleep well for you at the next nap/sleep time. Or a dime for every time that he didn't in fact sleep well after not sleeping the previous times. Ugh. So after an hour of the good 'ol screaming before bed routine he was out - and then up again for an hour and then out for a while. I know it's crazy but I'll go to bed sometimes as early as 8:30 if I know we're in for a rough one. Besides, the soup kitchen below our apartment revs up for the day at 5am!
Thursday, November 5, 2009
Day 3 - Wed- with Nathan
Why do I always miss the big stuff? Those baby books offer places for you to write things like first words etc. but I need to make a place for this one.
First Time that Baby was SO ASLEEP he couldn't be awakened from a Nap. Wed, Nov. 4th.
WHAT?! my baby?!
AM- had to dive with another new person- Sarah - with Elmo on though no one heard a peep from him.
So then Nathan took him to the apartment and after an hour of deep sleep needed to wake the child to get him back for the second dive. Said he was so fast asleep he kept falling back asleep and was hard to wake up to get here. Wow. Wow.
PM- Elmo again- pleasant dive Took another nap for nathan although short
I got back to the apartment after my day in VA for the appointment around 6. I was hoping Oliver would still be up. Boy was he! That child was revved up and ready to go - playing in the new Elmo walker I picked up for him, babbling, walking in the walker (backwards) and having a grand time.
Finally, at 7:45 we decided we had better get him to sleep - (6 is the usual bedtime) He sucked on his hands (both - he hadn't let the left hand in there for at least a month) and laughed at nothing (his newest thing as of a few weeks ago) he let me sing to him and cried out a few times but after just 20 minutes was passed out cold. Easy for me to put him down on the bed too (something that previously required valium to accomplish).
He did wake up twice - once after 2 hours -with a cough and again a few hours later but we didn't have to go in. He slept for 8 hours straight. Woke for the usual hour to eat and didn't get up until 7am.
First Time that Baby was SO ASLEEP he couldn't be awakened from a Nap. Wed, Nov. 4th.
WHAT?! my baby?!
AM- had to dive with another new person- Sarah - with Elmo on though no one heard a peep from him.
So then Nathan took him to the apartment and after an hour of deep sleep needed to wake the child to get him back for the second dive. Said he was so fast asleep he kept falling back asleep and was hard to wake up to get here. Wow. Wow.
PM- Elmo again- pleasant dive Took another nap for nathan although short
I got back to the apartment after my day in VA for the appointment around 6. I was hoping Oliver would still be up. Boy was he! That child was revved up and ready to go - playing in the new Elmo walker I picked up for him, babbling, walking in the walker (backwards) and having a grand time.
Finally, at 7:45 we decided we had better get him to sleep - (6 is the usual bedtime) He sucked on his hands (both - he hadn't let the left hand in there for at least a month) and laughed at nothing (his newest thing as of a few weeks ago) he let me sing to him and cried out a few times but after just 20 minutes was passed out cold. Easy for me to put him down on the bed too (something that previously required valium to accomplish).
He did wake up twice - once after 2 hours -with a cough and again a few hours later but we didn't have to go in. He slept for 8 hours straight. Woke for the usual hour to eat and didn't get up until 7am.
Day 2 - Tuesday- meeting nathan tonight
AM - One of the technicians/nurses here had to take him into the chamber. Poor Ollie with the new people. She said he actually napped for 20 minutes in there. Again he was happy after and played on the floor.
PM - He didn't fuss too much and afterwards was so wound up and playing on the floor that it was just hilarious to watch. He played for at least 25 minutes. He was grabbing a toy and rolling from back to side and back again. He kept going after my skirt as I sat on the floor next to him and tried to use it to roll onto his stomach although he then didn't know what he wanted to do. I put him in a crawl position - not his favorite lately but since he wanted to roll over - right? And he held himself in that crawl position very strongly for a minute.
We got back to the apartment and I decided to pack us up. We were heading to winston-salem to meet Nathan. He's coming down each week for his 2 days off. I needed to get to an appointment at home for myself on Wednesday morning so we decided to meet and switch vehicles so Ollie wouldn't miss Wednesday's dives. Oliver only napped for 30 minutes in the car despite being very tired.
When we met at the mall restaurant Oliver was wired- crazy exciteable - jumping all around in my lap and it was after 6, his usual bedtime. Nathan said he was good in the car- slept well and had a decent night of rest too.
PM - He didn't fuss too much and afterwards was so wound up and playing on the floor that it was just hilarious to watch. He played for at least 25 minutes. He was grabbing a toy and rolling from back to side and back again. He kept going after my skirt as I sat on the floor next to him and tried to use it to roll onto his stomach although he then didn't know what he wanted to do. I put him in a crawl position - not his favorite lately but since he wanted to roll over - right? And he held himself in that crawl position very strongly for a minute.
We got back to the apartment and I decided to pack us up. We were heading to winston-salem to meet Nathan. He's coming down each week for his 2 days off. I needed to get to an appointment at home for myself on Wednesday morning so we decided to meet and switch vehicles so Ollie wouldn't miss Wednesday's dives. Oliver only napped for 30 minutes in the car despite being very tired.
When we met at the mall restaurant Oliver was wired- crazy exciteable - jumping all around in my lap and it was after 6, his usual bedtime. Nathan said he was good in the car- slept well and had a decent night of rest too.
Medicine update
On a side note - Oliver has tried out several medicines for various things. About a month ago he went from eating/sleeping/coordinate moving quite well to sort of dropping all those skills quickly. It was awful. He had been on low dose Valium for naps and was back off of it. We started up valium again at night just for the 2 weeks leading up to the treatments because we all needed some sleep. He had also suddenly developed really bad acid reflux and was on pepcid twice a day. While we weaned him back off the valium before coming here we left him on the pepcid. This is noteworthy because the valium was helping him sleep. HBOT can help you sleep so I wanted to know which was causing sleep if sleep got any better. Don't want to think you're spending money on something that works (HBOT) if it's in fact the medicine not the treatment.
Day 1 - Monday, Nov 2nd
1st Dive- not knowing Jessica, the woman bringing him into the chamber was the first obstacle but he also hated the idea of getting his temperature taken and ears checked. Then they put a ring around his neck to hold a hood for concentrated oxygen into his airway and that did him in. They climbed into the chamber looking like quite a struggle but coming out they looked like they had been in a real ocean dive. Both Jessica and Oliver were soaked from the hour's struggle and heat but Jessica is a champ and didn't complain.
Of course he's fine as soon as he's in my arms again. And it turned out that he was actually pretty happy and energetic. I laid him on the floor to play for a bit. Although I can't walk away it was nice to put him down to play. We tried for a nap back at the apartment with just a meager 20 minutes of sleep.
2nd Dive- They take a 3 hour break in between. Our schedule is 8 and noon. He fussed a bit less and Jessica started him off without so many clothes on. Again he was happy after and played on the floor for about 15 minutes while I chatted with parents in the next group going into the chamber. We needed to go to the bank in Boone and he missed having his afternoon nap.
That night, following a bad day of sleep, he had an awful night of sleep. New place and no night light etc were probably to blame. He took nearly 2 hours to go down and then woke up after 40 minutes, then 1 hour, then 5 (thank goodness) but was up for an hour and then down for another hour before getting up for good at 5:30am.
Of course he's fine as soon as he's in my arms again. And it turned out that he was actually pretty happy and energetic. I laid him on the floor to play for a bit. Although I can't walk away it was nice to put him down to play. We tried for a nap back at the apartment with just a meager 20 minutes of sleep.
2nd Dive- They take a 3 hour break in between. Our schedule is 8 and noon. He fussed a bit less and Jessica started him off without so many clothes on. Again he was happy after and played on the floor for about 15 minutes while I chatted with parents in the next group going into the chamber. We needed to go to the bank in Boone and he missed having his afternoon nap.
That night, following a bad day of sleep, he had an awful night of sleep. New place and no night light etc were probably to blame. He took nearly 2 hours to go down and then woke up after 40 minutes, then 1 hour, then 5 (thank goodness) but was up for an hour and then down for another hour before getting up for good at 5:30am.
Oliver's Background
This is going to be a long, somewhat boring post intended to list all of Oliver's abilities prior to coming to this treatment. A bunch of his caretakers noted which skills he was strong and weak at for the purpose of comparing before and after.
Eyes- cross somewhat equally - maybe more on the left side - one at a time almost each time it happens- to the inside (nose) - infrequent since valium restarted - had been occurring more after Sept downslide
Hands- uses right a whole lot more - right is open more - sucks on right hand only
Arms- elbows are either straight or bent - there isn't movement from one position to another - doesn't cross midline much at all with either arm/hand or raise them upwards or in an up/down motion except minimally and rarely
Legs- kicks equally, has pretty flat feet, a little curl to toes when walking, scissors regularly when walking since Sept
Trunk- flops forward with neck and back except when excited and whole body stiffens - or angry
Excited- stiffens all muscles - including face, jaw, hands
Grip- very very tight lately when he is gripping something out of excitement especially (hair)
Eating- not at all - wants to but tons of gas caused by the smallest effort, not drinking
Drool- mild to moderate - not soaking shirts or in apparent teething pain
Acid Reflux- quite violent stomach lurching/contracting when stomach is empty, gagging and a little spit up, can keep him awake or wake him up, causes him distress, on pepcid twice a day
Walk- loves to walk, will use walker to move and new therapuetic walker for short periods of time
Sleep- Length- okay to bad 1hr to 5 at a time Falling Asleep-varies by person, day, everything- can take from 30 minutes at a nap for parents to 2 hours - for sitters can take a lot less and include almost no crying for others
Exersaucer- will sit and play with mom right in front for up to 15 minutes - for others- dad, sitters more than 20 minutes
Crawl - doesn't really like to lately
Banging cups- will bang something on surface if prompted and reminded although noise scares him and he flinches each time with eyes closed
Startle- got really bad after sept problems started - will startle upon waking and just walking down hall- stairs of course - valium made it better - startle when falling asleep was awful when not on valium - almost impossible for anyone to put him down - better on valium
Verbal- very talkative - best noises "oh yeah" ooh nah , others singly without purposeful repitition or repeating after someone include da ga ba combinations and variations - cries using noise ma sometimes when not crying
Sense of humor - changed around October- will laugh at shows on TV a lot more - including fights on Jerry springer - (nathan's watching- not me) and will look up and laugh at you for no reason- we've gotten into giggling fits when he should be falling asleep for a nap
Started following commands - will play music on exersaucer when asked "more song" and "get the chicken" (it's a chicken weathervane on top of a barn- you hit it and it plays a song)
Words- understands a lot and responds when desiring something- "hold you" "hungry/eat/milk" "sleep" blue bunny, blankie, where's dad (or anyone else), cat, dog, go get or someone's going to get you, walk, chickens, enjoys hearing songs he knows, song, more,
What soothes him- elmos, visual distractions, walks, food, cousins/people/pets, TV - esp adults (loves Ellen), interested in faces
What aggravates him- when he can't move/get something/communicate - getting changed, bathed, sometimes when being fed
Mood- laughs and smiles a lot - up to 60% of the day with constant interaction- without interaction might fuss for 90% of day - fussy at sleepy times, can't be left alone at all
Sleep - see above - still resists it
Muscle tightness - consistent - worse when excited or upset- worse in arms
Purposefully switched a rattle from left to right hand at carol's before we left
Purposefully switched kicking his right leg to hit rattle in left hand to left leg so it would hit rattle - I know it seems somewhat unlikey that it was on purpose but I really think it was - you could see him go through the process of figuring it out
Doesn't sit, stiffens and falls onto side or back if left alone on couch
Doesn't crawl
Rolls- back to side easily - both sides, maybe to his left better, sometimes will continue on to stomach
Likes to be held and jump
Likes to dance in seated position (kicking legs)
Understands now that a new person might mean that he has to go to them so starts crying after introduction and first smile because he understands he might be given up by mom
Eyes- cross somewhat equally - maybe more on the left side - one at a time almost each time it happens- to the inside (nose) - infrequent since valium restarted - had been occurring more after Sept downslide
Hands- uses right a whole lot more - right is open more - sucks on right hand only
Arms- elbows are either straight or bent - there isn't movement from one position to another - doesn't cross midline much at all with either arm/hand or raise them upwards or in an up/down motion except minimally and rarely
Legs- kicks equally, has pretty flat feet, a little curl to toes when walking, scissors regularly when walking since Sept
Trunk- flops forward with neck and back except when excited and whole body stiffens - or angry
Excited- stiffens all muscles - including face, jaw, hands
Grip- very very tight lately when he is gripping something out of excitement especially (hair)
Eating- not at all - wants to but tons of gas caused by the smallest effort, not drinking
Drool- mild to moderate - not soaking shirts or in apparent teething pain
Acid Reflux- quite violent stomach lurching/contracting when stomach is empty, gagging and a little spit up, can keep him awake or wake him up, causes him distress, on pepcid twice a day
Walk- loves to walk, will use walker to move and new therapuetic walker for short periods of time
Sleep- Length- okay to bad 1hr to 5 at a time Falling Asleep-varies by person, day, everything- can take from 30 minutes at a nap for parents to 2 hours - for sitters can take a lot less and include almost no crying for others
Exersaucer- will sit and play with mom right in front for up to 15 minutes - for others- dad, sitters more than 20 minutes
Crawl - doesn't really like to lately
Banging cups- will bang something on surface if prompted and reminded although noise scares him and he flinches each time with eyes closed
Startle- got really bad after sept problems started - will startle upon waking and just walking down hall- stairs of course - valium made it better - startle when falling asleep was awful when not on valium - almost impossible for anyone to put him down - better on valium
Verbal- very talkative - best noises "oh yeah" ooh nah , others singly without purposeful repitition or repeating after someone include da ga ba combinations and variations - cries using noise ma sometimes when not crying
Sense of humor - changed around October- will laugh at shows on TV a lot more - including fights on Jerry springer - (nathan's watching- not me) and will look up and laugh at you for no reason- we've gotten into giggling fits when he should be falling asleep for a nap
Started following commands - will play music on exersaucer when asked "more song" and "get the chicken" (it's a chicken weathervane on top of a barn- you hit it and it plays a song)
Words- understands a lot and responds when desiring something- "hold you" "hungry/eat/milk" "sleep" blue bunny, blankie, where's dad (or anyone else), cat, dog, go get or someone's going to get you, walk, chickens, enjoys hearing songs he knows, song, more,
What soothes him- elmos, visual distractions, walks, food, cousins/people/pets, TV - esp adults (loves Ellen), interested in faces
What aggravates him- when he can't move/get something/communicate - getting changed, bathed, sometimes when being fed
Mood- laughs and smiles a lot - up to 60% of the day with constant interaction- without interaction might fuss for 90% of day - fussy at sleepy times, can't be left alone at all
Sleep - see above - still resists it
Muscle tightness - consistent - worse when excited or upset- worse in arms
Purposefully switched a rattle from left to right hand at carol's before we left
Purposefully switched kicking his right leg to hit rattle in left hand to left leg so it would hit rattle - I know it seems somewhat unlikey that it was on purpose but I really think it was - you could see him go through the process of figuring it out
Doesn't sit, stiffens and falls onto side or back if left alone on couch
Doesn't crawl
Rolls- back to side easily - both sides, maybe to his left better, sometimes will continue on to stomach
Likes to be held and jump
Likes to dance in seated position (kicking legs)
Understands now that a new person might mean that he has to go to them so starts crying after introduction and first smile because he understands he might be given up by mom
Creston, NC
Located about 4 hours from our home in Halifax, VA it's 2 hours away from any big city (Winston-Salem, NC and Johnson City, TN) but close to Boone, NC - a neat adventure type town. I think all the pre-cut Christmas Trees on this side of the nation come from Creston and surrounding areas. They operate tree farms on the scale that Halifax has it's tobacco farms (or used to anyway). It's in the mountains, cold, winding, scary roads but very pretty. There's a town nearby - Jefferson and also West Jefferson that is just 20 minutes and provides us with things we might need.
Miracle Mountain
I think it was Sara's Garden that led us to Miracle Mountain in the far western corner of North Carolina. With just under a 4 hour drive and a package including housing it appeared to be a better option than even being with the in-laws since Nathan wouldn't have to go so long without seeing Oliver. Although we seriously doubted the treatment concept at first it seemed like it could be helpful to try something before baby number 2 came along and with so many parents insisting on the benefits it would be hard to ignore it completely. With just a month to plan we signed up, found someone to bring Oliver into the group chamber (pregnant women aren't allowed) and moved into our apartment in Creston, NC on November 1st.
Sara's Garden
After hearing about it from a cranio-sacral specializing chiropractor that Oliver had in Charlottesville we looked into it first at Sara's Garden in Ohio - an hour away from Nathan's parents. Sara's garden was created for a baby with CP - the grandparents wanted to be able to provide this child and others with the treatments and so opened a center that does HBOT (hyperbaric o2 treatments) and conductive education - a sort of alternative to physical therapy.
Hyperbaric Oxygen Treatments
Go to miraclemountain.org to read their HBOT (hyperbaric oxygen treatment) manual for a better explanation than I could ever give. The short story is that it's a metal chamber- sometimes for an individual, sometimes made large enough for a group. Each "dive" consists of increasing the pressure in the tank, administering oxygen for a set amount of time at a set pressure and then decompressing before coming out. Found medically helpful in burn victims, the oxygen can help heal cells. Insurance companies and the medical field in general find it highly controversial as a treatment for brain damaged individuals- stroke, CP, trauma, etc and other conditions such as autism. But ask the parents or patients of these conditions and you'll find they think it's a very important treatment to include in the big picture.
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