Megan was up for 2 hours last night - her standard 1-3a 2 hour window. Will said it was a rough two hours. She slept in this morning so once again she got a cumulative 10.5-11 hours of sleep. She had a great morning. We put her down for a nap but she didn't sleep.
We had several people over when she got out of bed and she was happy to see them. She played with different people and did well. After dinner she played alone in the toy room while several of us played a board game in the dining room. She did awesome playing happily by herself.
She waved and said "hi" to nana and then later in the night she pointed at her granny and said "nana".
Her eye that was involved in the incident on Friday looks really bad today and it was tender enough that she didn't want to put her glasses on. The bruise was caused by her glasses so I am sure they are pushing on the area that is sore.
NOTES: b-1 IC, pro, 1.5 oil; l-1 IC, d-1 IC; no dd; detox bath; ate new vanilla pudding and gluten-free crackers I made
Sunday, August 31, 2014
Saturday, August 30, 2014
Update on our girl
Megan did well last night. She was awake for around an hour and then got a total of about 9 hours of sleep. She was a happy little girl this morning and did really well on our trip to get Will's truck from the hospital parking garage. She started acting tired around 10:15 or so and made it until 11:30 before we put her down for a nap.
She got a 3.5 hour nap! She woke up super happy and who could blame her. She went 5 days without even getting to lie down for a rest and today we put her down and she took full advantage. She had a great afternoon as well. Based on her lengthy nap I figured she wouldn't be tired but she was acting tired before her regular bedtime.
We didn't see much of a reaction to anything from the hospital exposures (crackers & meds). It could be that they were small quantities or the enzyme she is on helped her through them. We were happy to see that she has handled the exposure better than the last time.
NOTES: b-1 IC, pro, 1.5 oil, l-1 IC, d-1 IC; dd 4p after nap; detox bath after bfast to help with hospital exposure and after dinner for routine exposure
She got a 3.5 hour nap! She woke up super happy and who could blame her. She went 5 days without even getting to lie down for a rest and today we put her down and she took full advantage. She had a great afternoon as well. Based on her lengthy nap I figured she wouldn't be tired but she was acting tired before her regular bedtime.
We didn't see much of a reaction to anything from the hospital exposures (crackers & meds). It could be that they were small quantities or the enzyme she is on helped her through them. We were happy to see that she has handled the exposure better than the last time.
NOTES: b-1 IC, pro, 1.5 oil, l-1 IC, d-1 IC; dd 4p after nap; detox bath after bfast to help with hospital exposure and after dinner for routine exposure
Friday, August 29, 2014
Concussion
I got a call from the school nurse around 1p that Megan had fallen and hit her head but she was okay. When I picked her up the contusion on her head was ginormous and the story I was given about how she got it was completely bogus. I immediately took her to the doctor and was informed she had a concussion and that we needed to go to the hospital for a CT scan to rule out a brain bleed or fracture.
After several hours at the hospital and having to sedate her to get the CT scan done for the second time we were relieved to learn that there was no additional damage. They told us we had to keep her from hitting her head again for the next 7-10 days.
Megan was such a trooper through it all. She was fussy and definitely in pain and hungry and tired and yet every once in a while Will could get her to laugh.
Thursday post
Megan woke up around 9:30 this morning so she got a cumulative 10 hours again. I think that is her number - what she needs at night. She was happy when she woke up and only got upset for about 10 seconds which is an improvement for sure.
I finally spoke to her new diagnostician at school - this is the person responsible for managing Megan's school needs. It is her job to process any requests for services from me and to make sure that Megan's IEP is fully implemented in the classroom. I knew this based on battery usage, but last night I got it in writing from her teacher that they hadn't even showed Megan her talker at school....which is against the law since it is written in her IEP that she will have access to it at all times. Her diagnostician was on her way to Megan's classroom when I hung up the phone with her to figure things out with her teacher.
I finally spoke to her new diagnostician at school - this is the person responsible for managing Megan's school needs. It is her job to process any requests for services from me and to make sure that Megan's IEP is fully implemented in the classroom. I knew this based on battery usage, but last night I got it in writing from her teacher that they hadn't even showed Megan her talker at school....which is against the law since it is written in her IEP that she will have access to it at all times. Her diagnostician was on her way to Megan's classroom when I hung up the phone with her to figure things out with her teacher.
Thursday and overnight update
Megan slept later last night but then was still up for 2 hours 45 minutes. Sleeping later and then later and then later before she wakes up is a pattern we have seen before. She has two patterns. One is the amount of time she is awake shortens until it is gone and then other is that the time when she wakes up keeps moving later until it is late enough that when she wakes up she doesn't go back to sleep again thus sleeping through the night. We are not there yet but it looks like this is the pattern she is currently following.
Megan had a great day yesterday. She was finally given time with her talker at school and after her PT session she said "therapist" with it.
She had a session with Dr B. and it went well. This is our last week of twice a week, unless only getting one next week causes her to regress. She said "Light" almost perfectly at the doctor's office. It was good to hear it again.
She has been doing better in the car, even with our long car rides. I attached one of her chewy P's to the strap and it seems to be what is making the difference. She chews on it a lot, when she isn't eating o's of course. I think it must relieve her head stuff and so she handles the rides better.
NOTES: b-1 IC, pro, 1.5 oil, l-1 ID, d-1 IC; dd at school, CST, adjustment
Megan had a great day yesterday. She was finally given time with her talker at school and after her PT session she said "therapist" with it.
She had a session with Dr B. and it went well. This is our last week of twice a week, unless only getting one next week causes her to regress. She said "Light" almost perfectly at the doctor's office. It was good to hear it again.
She has been doing better in the car, even with our long car rides. I attached one of her chewy P's to the strap and it seems to be what is making the difference. She chews on it a lot, when she isn't eating o's of course. I think it must relieve her head stuff and so she handles the rides better.
NOTES: b-1 IC, pro, 1.5 oil, l-1 ID, d-1 IC; dd at school, CST, adjustment
Thursday, August 28, 2014
Wednesday update
Megan ended up sleeping until almost 9am yesterday and she had a great day. She was still tired yesterday afternoon but she was much better than she has been. She made it through the 3rd day of school without damaging her glasses at all, instead she stretched her shirt out by repeatedly taking it off. :-P
Megan continues to tell us "no" appropriately here and there. She is also using her talker to request "television on".
Last night she was awake for 2.5-3 hours and at 9:11 she is still asleep this morning.
Wednesday NOTES: b-1 IC, pro, 1.5 oil; l-1 IC, d-1 IC; day 3 of no dd - gave her pear with breakfast
Megan continues to tell us "no" appropriately here and there. She is also using her talker to request "television on".
Last night she was awake for 2.5-3 hours and at 9:11 she is still asleep this morning.
Wednesday NOTES: b-1 IC, pro, 1.5 oil; l-1 IC, d-1 IC; day 3 of no dd - gave her pear with breakfast
Wednesday, August 27, 2014
New approach may have helped make it a better night
Megan woke up at 12:40 extremely unhappy. She was going crazy and was still at it 12 minutes later. I decided to try a new approach, something that we had tried in the past, but didn't work; but Megan is different now so I figured it was worth a shot. I went into her room and got in bed with her. I told her she had to lie down or I would have to leave. Previously she would have sat up every 5-8 seconds and have to be told to lie down and most of the time helped to do it.
Last night she didn't sit up one time. She did pick her head up a few times but quickly laid it back down when instructed. I ran my fingers through her hair and stroked her face and told her I was sorry she was awake and that mommy and daddy were working very hard to help her so that she didn't have to hurt anymore. I tried rubbing her tummy but she was clearly in pain and didn't want me touching it. I tried to rub her head, again she immediately moved my hand. Based on what we know is going on and what she has been exposed to I assume her stomach was in pain and she had a headache. :-(
I was able to soothe her for 15 minutes or so before she started feeling better. Once she started feeling better she continued to obey and lie down but she started kicking her legs, etc. Everything from the waist down was in motion. I told her it was time for me to leave and as expected she was not happy about it. She screamed for about 10 minutes and then calmed down and started playing. I handed the monitor off to Will so I could get some sleep (1 am and hadn't gone to sleep yet) and he took over. He said she played until 2, cried until 2:30 and was asleep sometime between 2:30-3a.
It is currently 7:30 and she is still asleep. She has had about 10 hours of total sleep at this point.
Last night she didn't sit up one time. She did pick her head up a few times but quickly laid it back down when instructed. I ran my fingers through her hair and stroked her face and told her I was sorry she was awake and that mommy and daddy were working very hard to help her so that she didn't have to hurt anymore. I tried rubbing her tummy but she was clearly in pain and didn't want me touching it. I tried to rub her head, again she immediately moved my hand. Based on what we know is going on and what she has been exposed to I assume her stomach was in pain and she had a headache. :-(
I was able to soothe her for 15 minutes or so before she started feeling better. Once she started feeling better she continued to obey and lie down but she started kicking her legs, etc. Everything from the waist down was in motion. I told her it was time for me to leave and as expected she was not happy about it. She screamed for about 10 minutes and then calmed down and started playing. I handed the monitor off to Will so I could get some sleep (1 am and hadn't gone to sleep yet) and he took over. He said she played until 2, cried until 2:30 and was asleep sometime between 2:30-3a.
It is currently 7:30 and she is still asleep. She has had about 10 hours of total sleep at this point.
Tuesday, August 26, 2014
Rough night and round 1 of test results are in
Megan had an extremely rough night. Not only was she up for 4 hours 15 minutes but every 30 minutes she would be almost asleep and then start screaming again. Ugh! She finally got back to sleep at 5am so I wasn't expecting her to make it to school. She woke up around 8:30 and was very unhappy but calmed down after 8-10 minutes. I got her up and she was good to go. She didn't seem tired, she was doing okay.
She ate all her breakfast and was playing well. I asked her if she wanted to go to school and she didn't say no, and she had told me no not that long. I had been offering her the Y and she kept pushing it away and on my third try she said "NO" and threw it across the room. I apologize and said "I got it".
I took her to school just before 10 and she made it through the day. I was planning on picking her up at 1 but her teacher said she was fine. She completely broke her glasses during pick up, after having broken the nose piece yesterday.
Will and I went to the doctor to get Megan's first round of test results (urine/stool). The doctor said "you are definitely on the right track with salicylates and if you are not already you should be looking at oxalates too". Bahahaha. Lady I am not making up what happens to her when she eats these things; imagine what the numbers would've looked like before we started FG. Her Benz were high too. There were a LOT of indicators that she likely has a MTHFR mutation - we are still waiting on the DNA results for that information. Based on the symptoms of that mutation I, and the doctor, would be shocked if she didn't have it. It explains so much - all of her major issues are on the list of symptoms, including her over the top sensitivity to chemicals. Her vitamins are all over the chart (she isn't able to process what she eats, again no brainer), and her enzymes are off as well. The good news is she doesn't have candidia - yay! She has one type of yeast that is a little high, but not out of whack yet, so doing preemptive treatment. There was a bad bacteria that was off the chart - we are consulting with her pediatrician on that one to address it. We are treating everything with a series of supplements working our way up to 11 at breakfast, 7 at lunch, 6 at dinner and 2 at bedtime. Some of them will be discontinued over time (30 days, 90 days, 4 months) as issues resolve.
I am working on a delivery system to get all of these things into Megan. They are all in capsule form so that we avoid flavorings but that is making it more difficult to get them into a substance that she will accept. We are ramping up slowly, adding 1 thing every 3 days.
NOTES: b-1 IC, pro, 1.5 oil; l-1IC, d-1IC; day 2 no dd
She ate all her breakfast and was playing well. I asked her if she wanted to go to school and she didn't say no, and she had told me no not that long. I had been offering her the Y and she kept pushing it away and on my third try she said "NO" and threw it across the room. I apologize and said "I got it".
I took her to school just before 10 and she made it through the day. I was planning on picking her up at 1 but her teacher said she was fine. She completely broke her glasses during pick up, after having broken the nose piece yesterday.
Will and I went to the doctor to get Megan's first round of test results (urine/stool). The doctor said "you are definitely on the right track with salicylates and if you are not already you should be looking at oxalates too". Bahahaha. Lady I am not making up what happens to her when she eats these things; imagine what the numbers would've looked like before we started FG. Her Benz were high too. There were a LOT of indicators that she likely has a MTHFR mutation - we are still waiting on the DNA results for that information. Based on the symptoms of that mutation I, and the doctor, would be shocked if she didn't have it. It explains so much - all of her major issues are on the list of symptoms, including her over the top sensitivity to chemicals. Her vitamins are all over the chart (she isn't able to process what she eats, again no brainer), and her enzymes are off as well. The good news is she doesn't have candidia - yay! She has one type of yeast that is a little high, but not out of whack yet, so doing preemptive treatment. There was a bad bacteria that was off the chart - we are consulting with her pediatrician on that one to address it. We are treating everything with a series of supplements working our way up to 11 at breakfast, 7 at lunch, 6 at dinner and 2 at bedtime. Some of them will be discontinued over time (30 days, 90 days, 4 months) as issues resolve.
I am working on a delivery system to get all of these things into Megan. They are all in capsule form so that we avoid flavorings but that is making it more difficult to get them into a substance that she will accept. We are ramping up slowly, adding 1 thing every 3 days.
NOTES: b-1 IC, pro, 1.5 oil; l-1IC, d-1IC; day 2 no dd
Monday, August 25, 2014
First day of Kindergarten
This morning, about 15 minutes ago, I dropped Megan off for her first day of Kindergarten. She did amazing! Before we left the house I sent Sam to get in the car so I could have a couple of minutes alone with her. I was dancing with her and I told her I was going to miss her today and she put her little cheek on mine and snuggled me for several seconds. Such a sweet little miss to love on me.
When we got to school I parked and got the kids out of the car. I put Megan's new backpack on her, which she hadn't even seen since I bought it after she went to bed last night. She was very excited to put it on - it weighs less than the one from last year and she is a little stronger than she was so she walked with it without a problem - no tipping over this time.
She walked with me through the parking lot and right up to the doors where her teachers were waiting. She went right to her assistant teacher, whom she had just met, and tried to walk into the building. I got there early today because I had to fill out a form so that they can give Megan her enzyme with her lunch. I said to Megan "wait a minute I need bye kisses before you can go inside". I finished the form and she walked up to me and gave me kisses and hugs and Sam and I walked away. She was standing there the entire time, able to watch us for a good minute or so while we made our way to the car. I don't know if she was watching us or not, I didn't turn around. I did see her standing there talking to her teacher when I drove out of the parking lot.
Yesterday we removed all gluten free items from Megan's diet. Something was up and because we had added so many things in a very short time frame we couldn't know for sure what was causing the 5 hour sessions. I had a hunch that it might be the new bread since she had some samples the day before we went gluten free and that was her first night up for 5+ hours. The new bread has molasses in it which a lot of kids react to.
Last night we were hoping she would get some decent sleep, but were expecting her to be awake for 3 hours as that would be her typical progression after having been up for 5+ hours for several nights. I couldn't sleep so I was able to see her "trigger times" pass without incident. She woke up at 10:59 and was back asleep by 11 - basically she just made a noise when she rolled over. She made it past the 11:30 trigger and then the 12:45 trigger and then the 1:30 trigger and then woke up a few minutes after 4a. She got 9 hours and 15 minutes of solid sleep before she woke up. She may have gone back to sleep for a little bit and then woke up again at 6a. She was playing so Will went back to sleep and then she started crying again at 6a which means she could've dosed off again and woken back up.
Aside from the 7 hour thing my biggest concern for her leading up to today was that she was going to be up all night and then super tired when she finally woke up and have a rough day because of it.
NOTES: b-1 IC, pro, oil, l-1 IC at school, d-1 IC; CST, adjustment
When we got to school I parked and got the kids out of the car. I put Megan's new backpack on her, which she hadn't even seen since I bought it after she went to bed last night. She was very excited to put it on - it weighs less than the one from last year and she is a little stronger than she was so she walked with it without a problem - no tipping over this time.
She walked with me through the parking lot and right up to the doors where her teachers were waiting. She went right to her assistant teacher, whom she had just met, and tried to walk into the building. I got there early today because I had to fill out a form so that they can give Megan her enzyme with her lunch. I said to Megan "wait a minute I need bye kisses before you can go inside". I finished the form and she walked up to me and gave me kisses and hugs and Sam and I walked away. She was standing there the entire time, able to watch us for a good minute or so while we made our way to the car. I don't know if she was watching us or not, I didn't turn around. I did see her standing there talking to her teacher when I drove out of the parking lot.
Yesterday we removed all gluten free items from Megan's diet. Something was up and because we had added so many things in a very short time frame we couldn't know for sure what was causing the 5 hour sessions. I had a hunch that it might be the new bread since she had some samples the day before we went gluten free and that was her first night up for 5+ hours. The new bread has molasses in it which a lot of kids react to.
Last night we were hoping she would get some decent sleep, but were expecting her to be awake for 3 hours as that would be her typical progression after having been up for 5+ hours for several nights. I couldn't sleep so I was able to see her "trigger times" pass without incident. She woke up at 10:59 and was back asleep by 11 - basically she just made a noise when she rolled over. She made it past the 11:30 trigger and then the 12:45 trigger and then the 1:30 trigger and then woke up a few minutes after 4a. She got 9 hours and 15 minutes of solid sleep before she woke up. She may have gone back to sleep for a little bit and then woke up again at 6a. She was playing so Will went back to sleep and then she started crying again at 6a which means she could've dosed off again and woken back up.
Aside from the 7 hour thing my biggest concern for her leading up to today was that she was going to be up all night and then super tired when she finally woke up and have a rough day because of it.
NOTES: b-1 IC, pro, oil, l-1 IC at school, d-1 IC; CST, adjustment
Sunday, August 24, 2014
Tired but talking
Such a tired little miss today. Megan played as long as we were right there with her, but she was so tired.
On a happy note she is babbling more today. In response to questions twice today Megan verbally said "no" to me. It was awesome. I just sat there a little surprised - my girl talked to me, appropriately, verbally. Yippee! Will said she said "no" to him twice today too. Will and I talked about it and compared what happened and with both of us she just said no like she has been saying it to us all along - she wasn't proud of herself for doing it or surprised she just said it and went about her business.
Tonight before bed I told her that tomorrow as her first day of school. I reminded her about the new room and teacher, etc and asked her if she wanted to go to school tomorrow and she smiled at me. After having said "no" four times today I didn't get one, I got a smile. I told her that if she has as rough of a night tonight as she did last night and she is too tired to go that I will not take her tomorrow and we will wait for the next day.
NOTES: b-1 IC, Pro, Oil, l-1 IC, d-1 IC; stopped gluten-free bread and snacks, added gluten back in and Megan sneezed again this afternoon for the first time in 2 or 3 days; detox bath; dd 2:30, no nap
On a happy note she is babbling more today. In response to questions twice today Megan verbally said "no" to me. It was awesome. I just sat there a little surprised - my girl talked to me, appropriately, verbally. Yippee! Will said she said "no" to him twice today too. Will and I talked about it and compared what happened and with both of us she just said no like she has been saying it to us all along - she wasn't proud of herself for doing it or surprised she just said it and went about her business.
Tonight before bed I told her that tomorrow as her first day of school. I reminded her about the new room and teacher, etc and asked her if she wanted to go to school tomorrow and she smiled at me. After having said "no" four times today I didn't get one, I got a smile. I told her that if she has as rough of a night tonight as she did last night and she is too tired to go that I will not take her tomorrow and we will wait for the next day.
NOTES: b-1 IC, Pro, Oil, l-1 IC, d-1 IC; stopped gluten-free bread and snacks, added gluten back in and Megan sneezed again this afternoon for the first time in 2 or 3 days; detox bath; dd 2:30, no nap
Saturday, August 23, 2014
Pretend
Another rough night for Megan last night and unfortunately she didn't nap today, so it was an early bedtime for her.
She had a fun morning and even did well on a car ride in the late afternoon.
I downloaded a video from youtube that Megan loves. She gets really excited and claps and dances to the music.
Yesterday we had a lot of fun playing pretend with a big scoop. She was pretending to dump its contents on my head and I would react and wipe it off. I showed her to scoop from a container and eventually she decided the container was empty and scooped from the floor into the container a few times to refill it. I was impressed. It was fun to play pretend with her until she got really excited and would whack me with the spoon, but I will take it.
NOTES: b-1 IC, pro, oil; l-1 IC, d-1 IC; dd 1:30, no nap
She had a fun morning and even did well on a car ride in the late afternoon.
I downloaded a video from youtube that Megan loves. She gets really excited and claps and dances to the music.
Yesterday we had a lot of fun playing pretend with a big scoop. She was pretending to dump its contents on my head and I would react and wipe it off. I showed her to scoop from a container and eventually she decided the container was empty and scooped from the floor into the container a few times to refill it. I was impressed. It was fun to play pretend with her until she got really excited and would whack me with the spoon, but I will take it.
NOTES: b-1 IC, pro, oil; l-1 IC, d-1 IC; dd 1:30, no nap
Friday, August 22, 2014
Progress, if you don't count the sleep
Megan was awake for 5.5 hours last night. She was just starting to settle back down when Sam fell out of bed and started screaming. And sadly she still woke up early so she didn't get much sleep at all. She had a good morning despite her tiredness. She got a 2 hour nap today, which is good.
Will and I have been going over everything trying to figure out anything that might be causing her to wake up. She is currently taking her probiotic at dinner so we will be changing it to breakfast and hopefully that will help.
Despite the continuing sleep issues we have been noticing improvements in other areas. She is able to control behaviors that she wasn't before. Yesterday she was poking herself repeatedly and wouldn't stop and I told her that I was going to put her down for nap if she poked herself again. She stopped immediately and didn't poke herself again for 30 minutes, at least. What started the poking was me asking if she was ready for nap - clearly she wasn't. :-) That is just one example of many instances over the past 2-3 days.
The other thing that has been going on for the past 3-4 days is that when we ask Megan a question her immediate reaction is to move her mouth. She is moving her mouth like she is talking, though at the moment sound is not coming out. It is so fun to watch her try to respond to us. She has been a little more verbal the past two days, saying words that she had started and then stopped saying.
NOTES: b-1 IC, 1.5ml oil, l-1 IC, d-1 IC; no dd or detox bath or probiotic
Will and I have been going over everything trying to figure out anything that might be causing her to wake up. She is currently taking her probiotic at dinner so we will be changing it to breakfast and hopefully that will help.
Despite the continuing sleep issues we have been noticing improvements in other areas. She is able to control behaviors that she wasn't before. Yesterday she was poking herself repeatedly and wouldn't stop and I told her that I was going to put her down for nap if she poked herself again. She stopped immediately and didn't poke herself again for 30 minutes, at least. What started the poking was me asking if she was ready for nap - clearly she wasn't. :-) That is just one example of many instances over the past 2-3 days.
The other thing that has been going on for the past 3-4 days is that when we ask Megan a question her immediate reaction is to move her mouth. She is moving her mouth like she is talking, though at the moment sound is not coming out. It is so fun to watch her try to respond to us. She has been a little more verbal the past two days, saying words that she had started and then stopped saying.
NOTES: b-1 IC, 1.5ml oil, l-1 IC, d-1 IC; no dd or detox bath or probiotic
Thursday, August 21, 2014
Meet the teacher
Tonight Megan, Will and I went to her new school and saw her classroom and she got to meet her teacher and 2 of her 3 classmates. As expected, she is much smaller than the two children we did meet, but she held her own. She even gave the little boy a kiss on the arm as he ran by her. He was running around constantly and she thought it was great. She kept smiling and clapping and telling him to go, go, go.
She loved her room. She loved being in the school, walking down the hall. Her room is HUGE. It is about double the size of her previous two rooms and there are half the kids. The first thing she did was walk right up to the table, pull out a chair and sit down. We showed her her seat - she has a placemat with a red butterfly and her name on it. She kept touching the butterfly and smiling.
She walked all over that room exploring everything and everyone who was in the room. 7 hours is still going to be a very, very LONG time for her to be away from me but at least she was happy in the room tonight.
She had a wonderful day today, despite being up for 3 hours again and waking up early. She woke up happy and stayed that way all morning. We went to 3 stores this morning and she was fine in the car the entire time. I was only planning on doing one of the three stops but since she was fine I decided to do the next and then the next. She did great in the stores too. She had a great time playing at home too. I put her down for a nap because and she was almost asleep when I realized she was dirty. I changed her and then she didn't go to sleep and right at the time I was headed to get her she was asleep. She was dirty again when I had to wake her up (you read that right, I woke her up) so that she could have dinner before going to the school. I am thinking she must have been dirty again before she feel asleep and she was just tired enough that she managed to go to sleep anyway.
NOTES: b-1 IC, Oil, l-1 IC, d-1 IC, pro; dd 1:20, 4:30
She loved her room. She loved being in the school, walking down the hall. Her room is HUGE. It is about double the size of her previous two rooms and there are half the kids. The first thing she did was walk right up to the table, pull out a chair and sit down. We showed her her seat - she has a placemat with a red butterfly and her name on it. She kept touching the butterfly and smiling.
She walked all over that room exploring everything and everyone who was in the room. 7 hours is still going to be a very, very LONG time for her to be away from me but at least she was happy in the room tonight.
She had a wonderful day today, despite being up for 3 hours again and waking up early. She woke up happy and stayed that way all morning. We went to 3 stores this morning and she was fine in the car the entire time. I was only planning on doing one of the three stops but since she was fine I decided to do the next and then the next. She did great in the stores too. She had a great time playing at home too. I put her down for a nap because and she was almost asleep when I realized she was dirty. I changed her and then she didn't go to sleep and right at the time I was headed to get her she was asleep. She was dirty again when I had to wake her up (you read that right, I woke her up) so that she could have dinner before going to the school. I am thinking she must have been dirty again before she feel asleep and she was just tired enough that she managed to go to sleep anyway.
NOTES: b-1 IC, Oil, l-1 IC, d-1 IC, pro; dd 1:20, 4:30
Wednesday, August 20, 2014
Almost a great night and a good day
She had a great night until she didn't. She progressed as expected by waking up and going back to sleep in just 30 minutes. That is what was expected IF she woke up at all last night, based on her previous patterns. And then 45 minutes later she started crying again and settled and then she sneezed 4 times and decided to give up sleeping and play for 3 hours. Such a bummer for her. She slept in until 9:30 and woke up happy, but still took a 2 hour nap this afternoon which was awesome.
She started her Gluten-Free, Casein-Free (GFCF) diet today. I have been trying to get things together to start for a couple of weeks and finally decided to take the plunge. Prior to going FG it wouldn't have been a big deal at all but since the rest of her diet is so restricted her snacks are all gluten items. Today she had some brown rice crackers with garlic powder and loved them. She really enjoyed her sandwich with the new bread I baked yesterday too.
She also started back on fish oil today. This one is much more potent than the one she had taken in the past and is supposed to do a lot of good things for her. It is lemon flavored. Her previous one was strawberry, which is a no-no right now. This one you have to work your way up in dosage so today she started with 1.5 mils which is just a little more than 1/4 tsp. I put it in a syringe so that I could just get it all in at once. She swallowed it but gave me a "what the heck was that" look. I am hoping to be able to sneak her vitamin into it in a couple of days because she really doesn't like it and hasn't taken it no matter what I put it in.
NOTES: b-1 IC, 1.5 mil Oil, l-1 IC, d-1 IC, pro; GFCF: Day 1; dd 9:30am
She started her Gluten-Free, Casein-Free (GFCF) diet today. I have been trying to get things together to start for a couple of weeks and finally decided to take the plunge. Prior to going FG it wouldn't have been a big deal at all but since the rest of her diet is so restricted her snacks are all gluten items. Today she had some brown rice crackers with garlic powder and loved them. She really enjoyed her sandwich with the new bread I baked yesterday too.
She also started back on fish oil today. This one is much more potent than the one she had taken in the past and is supposed to do a lot of good things for her. It is lemon flavored. Her previous one was strawberry, which is a no-no right now. This one you have to work your way up in dosage so today she started with 1.5 mils which is just a little more than 1/4 tsp. I put it in a syringe so that I could just get it all in at once. She swallowed it but gave me a "what the heck was that" look. I am hoping to be able to sneak her vitamin into it in a couple of days because she really doesn't like it and hasn't taken it no matter what I put it in.
NOTES: b-1 IC, 1.5 mil Oil, l-1 IC, d-1 IC, pro; GFCF: Day 1; dd 9:30am
Tuesday, August 19, 2014
A Nap, a teacher and going GFCF tomorrow
Megan was up for a little over 2 hours again last night which is actually not a bad thing since she wasn't worse than the night before.
Megan had her appointment with Dr. B. this morning. She had a better car ride to/from but definitely seemed tired on the way home. She kept resting her head on the side of her seat. I stopped at a store on the way home and picked up some GFCF snack options for her. By the time we got home both kids had eaten a ton of snack so I decided to just forgo lunch and put them straight in bed.
I told Megan that I would be back to get her up in a little bit and that I just wanted her to be able to get some rest before our afternoon appointment. I checked on her before heading up to get her and she was asleep. She hasn't napped in several days. I take this as another good sign that we are headed in the right direction.
Rather than wake her up after a 15 minute nap I left her in bed and went to the teacher meeting by myself. It was a good meeting; her teacher is very nice and seemed genuinely interested in all of the information I provided her. She will be very accessible to me during the day and that is helpful.
I am planning on starting Megan's 90 day GFCF diet tomorrow. I had been holding off until I could make a bunch of stuff from scratch for her but I am just too tired so I picked up several snack items already and will be getting a few more tonight. I also made a GFCF bread for sandwiches and she helped eat 3 slices already.
NOTES: B-1 IC, 1 VIT(didn't make it down), L-1 IC, 1/2 VIT, D-1 IC, Pro; dd 3p
Megan had her appointment with Dr. B. this morning. She had a better car ride to/from but definitely seemed tired on the way home. She kept resting her head on the side of her seat. I stopped at a store on the way home and picked up some GFCF snack options for her. By the time we got home both kids had eaten a ton of snack so I decided to just forgo lunch and put them straight in bed.
I told Megan that I would be back to get her up in a little bit and that I just wanted her to be able to get some rest before our afternoon appointment. I checked on her before heading up to get her and she was asleep. She hasn't napped in several days. I take this as another good sign that we are headed in the right direction.
Rather than wake her up after a 15 minute nap I left her in bed and went to the teacher meeting by myself. It was a good meeting; her teacher is very nice and seemed genuinely interested in all of the information I provided her. She will be very accessible to me during the day and that is helpful.
I am planning on starting Megan's 90 day GFCF diet tomorrow. I had been holding off until I could make a bunch of stuff from scratch for her but I am just too tired so I picked up several snack items already and will be getting a few more tonight. I also made a GFCF bread for sandwiches and she helped eat 3 slices already.
NOTES: B-1 IC, 1 VIT(didn't make it down), L-1 IC, 1/2 VIT, D-1 IC, Pro; dd 3p
Monday, August 18, 2014
Hopefully headed in the right direction
She did a little better last night, was only up for 2 hours so we are headed in the right direction. I feel like this is related to the fragrances she is exposed to at the new doctor's office. I took some fragrance free soap for her to use prior to Megan's session today; which she did happily.
Megan's hair did not smell after her appointment today so that's good. Since she has the first appointment of the morning and their office manager holds off with turning on on their warming candle until after our appointment the office isn't that smelly when we get there.
I had been spacing out Megan's visits because it seemed to me it would be more beneficial to her to get a treatment every few days; but that means her exposure has been being spaced out as well so that as she starts getting better she is exposed again. After discussing it with the doctor this morning I changed Megan's second appointment this week to be tomorrow morning. Hopefully the change in soap will be enough to fix the issue but if not at least she will be able to get over the exposure and have 2-3 nights of good sleep before she is exposed again. Eventually (in 1-2 weeks) she will only go once a week and then it will be every other week and then once a month. It just takes time to get her to that point.
Once again she did not sleep during nap today. This has been consistent every time she has seen the doctor. The dr is shocked because the treatment supposedly makes people sleep. :-P She was very tired late afternoon and I think I got to witness what it is going to be like once she is at school - though it might be worse since she at least got a rest time today.
Half of her initial lab results are in and as soon as the other test comes in I will have an appointment to review the information with the doctor. She said she will review the blood work results at a different appointment.
Granny stopped in for a few minutes tonight and Megan loved doing the hokey-pokey with everyone before her bath. She really loves that song.
NOTES: B-1 IC, L-1 IC, D-1 IC, Probiotic; CST, adjustment, blood draw, dd @ 3:10
Megan's hair did not smell after her appointment today so that's good. Since she has the first appointment of the morning and their office manager holds off with turning on on their warming candle until after our appointment the office isn't that smelly when we get there.
I had been spacing out Megan's visits because it seemed to me it would be more beneficial to her to get a treatment every few days; but that means her exposure has been being spaced out as well so that as she starts getting better she is exposed again. After discussing it with the doctor this morning I changed Megan's second appointment this week to be tomorrow morning. Hopefully the change in soap will be enough to fix the issue but if not at least she will be able to get over the exposure and have 2-3 nights of good sleep before she is exposed again. Eventually (in 1-2 weeks) she will only go once a week and then it will be every other week and then once a month. It just takes time to get her to that point.
Once again she did not sleep during nap today. This has been consistent every time she has seen the doctor. The dr is shocked because the treatment supposedly makes people sleep. :-P She was very tired late afternoon and I think I got to witness what it is going to be like once she is at school - though it might be worse since she at least got a rest time today.
Half of her initial lab results are in and as soon as the other test comes in I will have an appointment to review the information with the doctor. She said she will review the blood work results at a different appointment.
Granny stopped in for a few minutes tonight and Megan loved doing the hokey-pokey with everyone before her bath. She really loves that song.
NOTES: B-1 IC, L-1 IC, D-1 IC, Probiotic; CST, adjustment, blood draw, dd @ 3:10
Sunday, August 17, 2014
Getting records up to date
Friday NOTES: 1 IC b,l,d standard day with 3 hour nap, detox bath lunch & dinner
Saturday NOTES: 1 IC b,l,d, dd 6:15, detox bath dinner; kept her up all day - asleep by 6:45. Woke up 10:45-1:15; slept until 8:45ish.
Sunday
Good day. Still acting very tired. Thinking that maybe she feels like she has only gotten the amount of sleep she gets after she wakes up as opposed to the total hours. Put her down to rest for 2 hours but didn't allow her to go to sleep - not that she as trying. She was very tired this evening. She was extremely hungry. She ate a ton all afternoon.
NOTES: 1 IC, b,l,d, dd 2:30, detox bath after dinner
Saturday NOTES: 1 IC b,l,d, dd 6:15, detox bath dinner; kept her up all day - asleep by 6:45. Woke up 10:45-1:15; slept until 8:45ish.
Sunday
Good day. Still acting very tired. Thinking that maybe she feels like she has only gotten the amount of sleep she gets after she wakes up as opposed to the total hours. Put her down to rest for 2 hours but didn't allow her to go to sleep - not that she as trying. She was very tired this evening. She was extremely hungry. She ate a ton all afternoon.
NOTES: 1 IC, b,l,d, dd 2:30, detox bath after dinner
Thursday, August 14, 2014
Dr. B appointment
Megan did okay to/from Dallas. She is having a bit of a rough day - she will be fine and happy one minute and then notsomuch the next.
She did well with her CST today, the doctor said the back of her head is better today and her ears were way more sensitive. She kept moving when she was working on that area. At one point she just moved her head to the side and looked up at the doctor. She got an adjustment today and did well.
She did not sleep during nap. She was so tired but just couldn't get to sleep. She kept covering up with the blanket and then she would fuss until eventually she gave up and started playing. I am not sure what was going on - her hair smelled like the soap (I think) that the doctor uses so maybe that was the problem.
She was so tired that she got her bath immediately after dinner and then went to bed super early. She did decent, only screamed for about 10 minutes.
NOTES: 1 IC bfast, lunch, dinner, CST, adjustment, dd 1ish, detox bath
She did well with her CST today, the doctor said the back of her head is better today and her ears were way more sensitive. She kept moving when she was working on that area. At one point she just moved her head to the side and looked up at the doctor. She got an adjustment today and did well.
She did not sleep during nap. She was so tired but just couldn't get to sleep. She kept covering up with the blanket and then she would fuss until eventually she gave up and started playing. I am not sure what was going on - her hair smelled like the soap (I think) that the doctor uses so maybe that was the problem.
She was so tired that she got her bath immediately after dinner and then went to bed super early. She did decent, only screamed for about 10 minutes.
NOTES: 1 IC bfast, lunch, dinner, CST, adjustment, dd 1ish, detox bath
She made it!
It took Megan about an hour to get to sleep last night with her crying/screaming off/on that entire time. She wasn't going after her ears/hair though it seems she has retained her new technique of kneeing herself. Though I don't like that either it is preferable to injured ears or losing hair.
She slept until just after 7 and she wasn't happy when she woke up but she got over it after a few minutes.
What made the difference?
She slept until just after 7 and she wasn't happy when she woke up but she got over it after a few minutes.
What made the difference?
- Her teeth seem to be doing better are they giving her a break or is chewing on the Y chew making a difference
- She got a very long extended detox bath last night before bed. She hasn't had one in several days - just regular baths
Wednesday, August 13, 2014
Update and I was punked!
Megan slept from 10ish to 3:45 am. Thankfully she took close to a 3 hour nap today and an early enough of one that it shouldn't affect her ability to get to sleep tonight. She had a good morning - and actually did really well when I wasn't in the room with her. If I was in the room she just wanted to lay on me.
This morning I got up and came downstairs for a little bit before getting the kids up. I was hoping that Megan would go back to sleep like she was having her "regular" night, meaning going back to sleep after being awake for 3 or so hours. It didn't happen. She was playing and I was watching her and then I noticed.....she was no longer wearing anything. She has still been sleeping in her arm bands and so she not only got out of her jammies she got out of her arm bands. I ran upstairs and she was just relaxing in her bday suit and looked at me like "what?".
At nap time I put the arm bands in a different pair of jammies. This pair is good for 2-3 wears Before it stretches enough that she can get out of it. I was keeping an eye on her every few minutes just making sure there wasn't another incident when I saw her bending her completely bare arm and scratching her ear and then her nose. Hmmmm.....I ran upstairs and opened her door to see her sitting in her bed with her arm bands still on and her jammies hiked all the way up so that her legs were completely bare. My little flexible girl had been using her leg and foot to scratch her face. I have seen her do it many times but because of this morning and the fact that her leg was bare I thought it was her arm. She was not thrilled that I burst in and then left again.
Tonight she is going down in her houdini-proof jammies without the arm bands (they don't fit) for the first time since this round started. It is possible she will go after her ears/hair but we can't be checking on her constantly to make sure she is still dressed if she wakes up again tonight.
NOTES: 1 IC breakfast, lunch, dinner
This morning I got up and came downstairs for a little bit before getting the kids up. I was hoping that Megan would go back to sleep like she was having her "regular" night, meaning going back to sleep after being awake for 3 or so hours. It didn't happen. She was playing and I was watching her and then I noticed.....she was no longer wearing anything. She has still been sleeping in her arm bands and so she not only got out of her jammies she got out of her arm bands. I ran upstairs and she was just relaxing in her bday suit and looked at me like "what?".
At nap time I put the arm bands in a different pair of jammies. This pair is good for 2-3 wears Before it stretches enough that she can get out of it. I was keeping an eye on her every few minutes just making sure there wasn't another incident when I saw her bending her completely bare arm and scratching her ear and then her nose. Hmmmm.....I ran upstairs and opened her door to see her sitting in her bed with her arm bands still on and her jammies hiked all the way up so that her legs were completely bare. My little flexible girl had been using her leg and foot to scratch her face. I have seen her do it many times but because of this morning and the fact that her leg was bare I thought it was her arm. She was not thrilled that I burst in and then left again.
Tonight she is going down in her houdini-proof jammies without the arm bands (they don't fit) for the first time since this round started. It is possible she will go after her ears/hair but we can't be checking on her constantly to make sure she is still dressed if she wakes up again tonight.
NOTES: 1 IC breakfast, lunch, dinner
Tuesday, August 12, 2014
Bedtime better
She was up for 3 hours again last night but she didn't wake up at 11:30 for the first time in a long time. Yay. Now to get the teeth done.
Megan had her 2nd blood draw today and thanks to some finagling she only has to do 1 more instead of 2. The lady today was a pro and Megan did great despite having to sit there while 12 vials were filled. None were completely filled but that many different ones were needed for the tests. We got home late and after a quick lunch put the kids down around 1:30. I was on my way to get her out of bed when her teacher called. By the time I got off of the phone 20 minutes later she was asleep; and sleep she did. She slept from 3:40-6:50.
I expected bedtime to be really really horrible. We kept her up an hour late and she went down pretty decently. She did cry a little but nothing like she has been doing and certainly not what I expected after her nap.
NOTES: 1 IC breakfast, lunch, dinner, dd 7:30
Megan had her 2nd blood draw today and thanks to some finagling she only has to do 1 more instead of 2. The lady today was a pro and Megan did great despite having to sit there while 12 vials were filled. None were completely filled but that many different ones were needed for the tests. We got home late and after a quick lunch put the kids down around 1:30. I was on my way to get her out of bed when her teacher called. By the time I got off of the phone 20 minutes later she was asleep; and sleep she did. She slept from 3:40-6:50.
I expected bedtime to be really really horrible. We kept her up an hour late and she went down pretty decently. She did cry a little but nothing like she has been doing and certainly not what I expected after her nap.
NOTES: 1 IC breakfast, lunch, dinner, dd 7:30
Monday, August 11, 2014
Teeth, appt & new teethers that she actually likes
Last night was just a repeat of the last several nights. There was one difference, Megan woke up happy this morning. For the first time in a long time she wasn't the least bit unhappy when she woke up.
Her gums don't feel any different this morning and they definitely still hurt.
She had her CST this morning. I asked the doctor to check her neck to make sure there was nothing out of place from her falling and hitting her head. She checked Megan and said everything in her neck and back was perfect and she didn't even need an adjustment. :-)
Slight progress with her CST - she said her ear area is better today. Her jaw, on the other hand is still in bad shape due to the teething. She did say that the treatment today should help her and the more she has the more they will help with the teething pain.
I purchased Megan some "chewy" items. Technically they are not teethers - they are for strengthening jaws and helping kids with texture issues, etc. However, they are designed to reach all the way to the molars and they come in various "toughness" levels. I purchased Megan two "P" shape ones and a "Y" shaped one and she loves them. She has already chewed on them, especially the Y, more than any other teething device we have ever given her, and we have tried a ton. I hope they are able to give her some relief and help her teeth come through sooner.
Megan did not sleep during nap today - as much as I want her to sleep it is not horrible that she didn't nap since in two weeks she will no longer be getting a nap.
Megan's regular bedtime is 8p, if she doesn't nap we usually put her to bed around 7p. Tonight she climbed down out of my lap and laid down on the floor. Laying in the floor is a huge indicator that she is ready for bed so Will went ahead and took her up around 6:30 and she was asleep by 6:53. She still cried when he left the room but it was way better - I didn't even need the headphones to drown out the sound.
NOTES: 1 IC breakfast, lunch, dinner; dd 1:15, CST. No chiro adj needed
Her gums don't feel any different this morning and they definitely still hurt.
She had her CST this morning. I asked the doctor to check her neck to make sure there was nothing out of place from her falling and hitting her head. She checked Megan and said everything in her neck and back was perfect and she didn't even need an adjustment. :-)
Slight progress with her CST - she said her ear area is better today. Her jaw, on the other hand is still in bad shape due to the teething. She did say that the treatment today should help her and the more she has the more they will help with the teething pain.
I purchased Megan some "chewy" items. Technically they are not teethers - they are for strengthening jaws and helping kids with texture issues, etc. However, they are designed to reach all the way to the molars and they come in various "toughness" levels. I purchased Megan two "P" shape ones and a "Y" shaped one and she loves them. She has already chewed on them, especially the Y, more than any other teething device we have ever given her, and we have tried a ton. I hope they are able to give her some relief and help her teeth come through sooner.
Megan did not sleep during nap today - as much as I want her to sleep it is not horrible that she didn't nap since in two weeks she will no longer be getting a nap.
Megan's regular bedtime is 8p, if she doesn't nap we usually put her to bed around 7p. Tonight she climbed down out of my lap and laid down on the floor. Laying in the floor is a huge indicator that she is ready for bed so Will went ahead and took her up around 6:30 and she was asleep by 6:53. She still cried when he left the room but it was way better - I didn't even need the headphones to drown out the sound.
NOTES: 1 IC breakfast, lunch, dinner; dd 1:15, CST. No chiro adj needed
Sunday, August 10, 2014
UGH! We are not a fan of the molar action
Megan had a very rough night with her teeth. She woke up at 11:30 and went right back to sleep. This is what we see with the sals issue so we know that is under control. Then she woke up around 12:30 and escalated from there. She was up crying off/on until 3:30 and then she didn't sleep in this morning and didn't nap. Made for a very tired little miss.
Her teeth are really bothering her - she is working on both of her bottom molars right now. She is in enough discomfort that she is allowing us to massage them for her once in a while. I wish there was something we could do for her that would actually relieve her discomfort.
She went to bed well tonight - she did cry but not for long.
NOTES: 1 IC breakfast, lunch & dinner, dd 12:45
Her teeth are really bothering her - she is working on both of her bottom molars right now. She is in enough discomfort that she is allowing us to massage them for her once in a while. I wish there was something we could do for her that would actually relieve her discomfort.
She went to bed well tonight - she did cry but not for long.
NOTES: 1 IC breakfast, lunch & dinner, dd 12:45
Saturday, August 9, 2014
Great day
Megan had a great morning. I took a much needed nap and Will put her down at 12:30 and she was asleep by 1:15. She took a 3 hour and 15 minute nap. She had a really great afternoon but did not want to go to bed. I let her stay up late because she got so much sleep during her nap and she slept late.
She did better with getting into bed but started crying once I left the room. I don't blame her - she is not tired but I can't keep her up until 10p.
Megan did a great job with imitating today. I would do something and while doing it say "do this" and she would mimic it. Everything I did, I did twice - meaning I would pat my head twice, etc. I did things twice so that I would know if she was actually copying me. I wasn't able to get her to make any sounds with her mouth but the fact that she was doing it and with me saying "do this". When I filled out some paperwork in late May, early June it asked if she could do things by us doing them and telling her "do this" and no matter what we tried she didn't respond. So, this is good progress.
NOTES: 1 IC breakfast, 1 IC dinner, approved ibuprofen at bed time, no dd today
She did better with getting into bed but started crying once I left the room. I don't blame her - she is not tired but I can't keep her up until 10p.
Megan did a great job with imitating today. I would do something and while doing it say "do this" and she would mimic it. Everything I did, I did twice - meaning I would pat my head twice, etc. I did things twice so that I would know if she was actually copying me. I wasn't able to get her to make any sounds with her mouth but the fact that she was doing it and with me saying "do this". When I filled out some paperwork in late May, early June it asked if she could do things by us doing them and telling her "do this" and no matter what we tried she didn't respond. So, this is good progress.
NOTES: 1 IC breakfast, 1 IC dinner, approved ibuprofen at bed time, no dd today
Molars causing issues again
My phone is full of photos of the kids, photos of Megan. It has been a long time since I was able to take photos of her without upsetting her and I am really enjoying it.
Megan's night started out great. She woke up at her "currently usual time" and was able to get right back to sleep in less than 2-3 minutes. It is interesting that despite getting the enzyme twice a day instead of once like last time she is progressing at the same rate. About an hour later she woke up again and this time was really struggling. I was watching her and saw that she was trying to get at her left ear (she is still in the arm bands). All afternoon yesterday her bottom left molar area was bothering her and it was obvious from what she was doing while she was crying (no screaming) that it was hurting her.
I decided to go into her room to see if I could help her because she would cry, lie still and appear to be asleep and then 2-5 minutes later start crying again. I rubbed on her left jaw and she immediately did the feet stomping that really hurts thing. So I massaged all around her jaw area and even on her gum as much as she would let me.
She wasn't happy when I left the room but calmed down quickly. However, she went right back into the same routine of appearing to be asleep for a few minutes and then crying for 1-2 minutes. This cycle repeated for 45 minutes until she was finally asleep around 2am. She woke up at 8:15 this morning a little bit unhappy, but not too bad. Because of her early bedtime she still got 10.5 hours of total sleep so hopefully she doesn't feel like a zombie today.
Megan's night started out great. She woke up at her "currently usual time" and was able to get right back to sleep in less than 2-3 minutes. It is interesting that despite getting the enzyme twice a day instead of once like last time she is progressing at the same rate. About an hour later she woke up again and this time was really struggling. I was watching her and saw that she was trying to get at her left ear (she is still in the arm bands). All afternoon yesterday her bottom left molar area was bothering her and it was obvious from what she was doing while she was crying (no screaming) that it was hurting her.
I decided to go into her room to see if I could help her because she would cry, lie still and appear to be asleep and then 2-5 minutes later start crying again. I rubbed on her left jaw and she immediately did the feet stomping that really hurts thing. So I massaged all around her jaw area and even on her gum as much as she would let me.
She wasn't happy when I left the room but calmed down quickly. However, she went right back into the same routine of appearing to be asleep for a few minutes and then crying for 1-2 minutes. This cycle repeated for 45 minutes until she was finally asleep around 2am. She woke up at 8:15 this morning a little bit unhappy, but not too bad. Because of her early bedtime she still got 10.5 hours of total sleep so hopefully she doesn't feel like a zombie today.
Friday, August 8, 2014
Better night, much better day and pretending with mommy
Megan had a better night, though still not a better bedtime. She was only awake for 1.5 hours and she slept until 7:45. She had her first of 4 blood draws today. Yes I learned when at the lab today that because of Megan's weight and volume limitations her blood work will require 4 different draws. So not happy - they actually had to dig around today. She handled it like a champ but I was covered in sweat when we were done.
Megan had a great morning. She did okay with our two, very short, car rides. She wasn't fine but she was much better than yesterday. She had a great time this morning playing with Sam and I was even able to do some dishes - gasp!
I was playing with her in her bed after her rest time. I laid down and snuggled her baby like I was sleeping. When she took the baby away from me I said "waa, waaa, waaa" and then grabbed the baby and stopped crying. She looked at me kind of funny and then took the baby away again. I started crying again and she grabbed my hand, maneuvered it so my thumb was sticking out and then she put my thumb in my mouth. I thought that was great - she never sucked her thumb, she doesn't have any dolls that suck their thumb but she must have seen it somewhere.
NOTES: 1 IC bfast, dd/mushy 11a, 1 IC dinner
Megan had a great morning. She did okay with our two, very short, car rides. She wasn't fine but she was much better than yesterday. She had a great time this morning playing with Sam and I was even able to do some dishes - gasp!
I was playing with her in her bed after her rest time. I laid down and snuggled her baby like I was sleeping. When she took the baby away from me I said "waa, waaa, waaa" and then grabbed the baby and stopped crying. She looked at me kind of funny and then took the baby away again. I started crying again and she grabbed my hand, maneuvered it so my thumb was sticking out and then she put my thumb in my mouth. I thought that was great - she never sucked her thumb, she doesn't have any dolls that suck their thumb but she must have seen it somewhere.
NOTES: 1 IC bfast, dd/mushy 11a, 1 IC dinner
Thursday, August 7, 2014
Molars and appointment
Her molars are on the move again. She doesn't seem to be in much, if any, pain but the drooling has really picked up again, as has the reflux. She let me in her mouth two days ago without a problem but yesterday I had to work for it -though there was no feet stomping pain response when I felt of her gums. THIS WAS FROM YESTERDAY.....today I realized that her newly reappearing car issues are related to her teeth. She is having a horrible time in the car again and I know it is her teeth moving around.
She had a better afternoon yesterday, though she never napped. Her bedtime reaction was still bad, but better. She woke up just after 11:30 and was extremely unhappy about it. She calmed down after about 30 minutes but continued to cry for another 30ish minutes. She then started playing. She was awake for a long time and thankfully did get back to sleep eventually and then woke up at 8:30 this morning.
We had her appointment with Dr. B this morning and got CST and a chiropractic adjustment. She did amazing with the CST this time - did the whole treatment while laying on the table instead of having to be in my lap this time. Her stiffness numbers aren't better since Monday and her jaw area was stuck today and it wasn't on Monday which is probably due to her teething issues.
NOTES: 1 intolerance complex with breakfast, CST, adjustment, 1 intolerance complex at dinner
She had a better afternoon yesterday, though she never napped. Her bedtime reaction was still bad, but better. She woke up just after 11:30 and was extremely unhappy about it. She calmed down after about 30 minutes but continued to cry for another 30ish minutes. She then started playing. She was awake for a long time and thankfully did get back to sleep eventually and then woke up at 8:30 this morning.
We had her appointment with Dr. B this morning and got CST and a chiropractic adjustment. She did amazing with the CST this time - did the whole treatment while laying on the table instead of having to be in my lap this time. Her stiffness numbers aren't better since Monday and her jaw area was stuck today and it wasn't on Monday which is probably due to her teething issues.
NOTES: 1 intolerance complex with breakfast, CST, adjustment, 1 intolerance complex at dinner
Wednesday, August 6, 2014
Complete list of behaviors and symptoms
Megan when you are older and are reading through your blog books someday I want you to know that this list is purely for the purpose of us ensuring that we are recognizing all progress.
It is easy to forget little symptoms and behaviors and therefore lose the ability to see progress is and has been made. In order to avoid this I am compiling as complete a list as I can. With our most recent setbacks we started seeing a lot of behaviors that used to be daily and it was a nice reminder of how far she had come - though I prefer looking back on the list rather than having them come back again.
BEHAVIORS/SYMPTOMS
It is easy to forget little symptoms and behaviors and therefore lose the ability to see progress is and has been made. In order to avoid this I am compiling as complete a list as I can. With our most recent setbacks we started seeing a lot of behaviors that used to be daily and it was a nice reminder of how far she had come - though I prefer looking back on the list rather than having them come back again.
BEHAVIORS/SYMPTOMS
- Pulling hair
- Pulling ears
- Poking face
- Pinching self and others
- Biting hands, wrists, arms, legs
- Kneeing self in the mouth/chin
- Kicking self in head
- Hitting head on wall/floor/car seat
- Unhappy in the car unless has cheerios and/or someone singing to her
- Removing glasses
- Throwing toys
- Throwing food
- Taking food out of mouth
- Throwing sippy cup
- Putting everything in mouth, hands, toys, books, shirt - always needing something in mouth
- Keratinitis - bumps on arms and legs
- Drooling
- Reflux
- Constipation
- Salicylate sensitivity
- Fear of tunnels
- Fits when seeing someone (mommy) walk by, etc
- Throwing fits/screaming when put in bed
- Removing other people's glasses
- Not happy playing in a room without an adult
- Taking off diaper and not stopping when instructed to stop
- Always gassy
- Bumps, maybe warts, on fingers
- Diaper rash
- Eye turning in and shaking
- Sleeping issues
Back on the enzyme
Megan's night went pretty much exactly as it did after her initial first dose of the enzyme, with the exception of her bedtime flipping out. I think she didn't think it was time for bed and she expressed it with an hour of screaming.
She woke up again last night for 2.5 hours but her time when she was awake was better than it has been and then she slept in until 9:30. This is what she did last time. The difference this time has been how she is doing out of bed. She did great this morning as long as I was with her, but didn't do well when I left the room. We made a quick trip to the store and she had the worst car ride in a long time.
I was originally planning on keeping her up since she had gotten so much sleep but after the way it was going I went ahead and put her down for a nap. She got her enzyme again at lunch today so hopefully that will help her work through whatever is going on.
NOTES: 1 intolerance complex at lunch, dd 3:15
She woke up again last night for 2.5 hours but her time when she was awake was better than it has been and then she slept in until 9:30. This is what she did last time. The difference this time has been how she is doing out of bed. She did great this morning as long as I was with her, but didn't do well when I left the room. We made a quick trip to the store and she had the worst car ride in a long time.
I was originally planning on keeping her up since she had gotten so much sleep but after the way it was going I went ahead and put her down for a nap. She got her enzyme again at lunch today so hopefully that will help her work through whatever is going on.
NOTES: 1 intolerance complex at lunch, dd 3:15
Tuesday, August 5, 2014
Rough night and 2 more tests complete
Megan was awake from 10:30-12a and then woke up at 4:30 and never went back to sleep. Ugh! I was able to complete her urine test this morning so now we wait for another dirty diaper today. I gave her some pears this morning (hasn't had any in months) to try to expedite matters. She was extremely happy to see them and enjoyed them very much.
She is a bit of a handful this morning as she is super tired but as long as Sam and I do exactly what she wants at all times she is good to go. :-)
She had a dirty diaper at 11:30 so I called Fedex to pick up the package. She is napping right now and I am a happy mommy. She will get her enzyme with snack this afternoon.
NOTES: 1 intolerance complex at 2p
She is a bit of a handful this morning as she is super tired but as long as Sam and I do exactly what she wants at all times she is good to go. :-)
She had a dirty diaper at 11:30 so I called Fedex to pick up the package. She is napping right now and I am a happy mommy. She will get her enzyme with snack this afternoon.
NOTES: 1 intolerance complex at 2p
Monday, August 4, 2014
Testing progress and first CST
Megan has woken up the past 2 nights (no enzyme) and screamed for 30 minutes and then cried for 30 minutes and then spent 30 minutes putting herself back to sleep. We expected issues because of taking away the enzyme and though her screaming at nap time and bedtime is worse at least her sleeping isn't horrible. 2 nights ago she slept until 9a and this morning only until 6a.
She has been having good days, just needing a little extra support.
We were able to get enough saliva for Megan's DNA test last night and mailed it in today. It will take 2-3 weeks to get the results back. Megan had a dirty diaper today so now we need one more, hopefully tomorrow. I put cotton balls in her diaper tonight so that we can get her overnight urine sample in the morning. She has to fast for 8 hours for her blood work so I am going to take her first thing in the morning one day this week.
Megan had her first CST session today. She did really well, but would take the doctor's hand off of her head and would pull her head away. The doctor said every patient she has ever treated reacts this way during the first session because it feels weird. Megan was never in pain or upset she just wanted the doctor to move her hands. At one point she moved her hands to a different spot on her head and the doctor said she hadn't worked on that area yet and she took care of it.
Dr. Brooks said that they rate the movement of the scull on a scale of 0-3, with 0 being what you want to achieve. All of Megan's were either a 2 or 3. She said that ideally her numbers will start changing by the 3rd treatment. She warned me that Megan could be extremely hungry and tired as a result of the treatment. She didn't appear to have either. She did take a 1.5 hour nap and woke up unhappy, like she didn't get enough sleep. She was very hungry at dinner and started yawning a lot an hour before bedtime so we put her down about 30 minutes early. Maybe she had a delayed reaction.
She has been having good days, just needing a little extra support.
We were able to get enough saliva for Megan's DNA test last night and mailed it in today. It will take 2-3 weeks to get the results back. Megan had a dirty diaper today so now we need one more, hopefully tomorrow. I put cotton balls in her diaper tonight so that we can get her overnight urine sample in the morning. She has to fast for 8 hours for her blood work so I am going to take her first thing in the morning one day this week.
Megan had her first CST session today. She did really well, but would take the doctor's hand off of her head and would pull her head away. The doctor said every patient she has ever treated reacts this way during the first session because it feels weird. Megan was never in pain or upset she just wanted the doctor to move her hands. At one point she moved her hands to a different spot on her head and the doctor said she hadn't worked on that area yet and she took care of it.
Dr. Brooks said that they rate the movement of the scull on a scale of 0-3, with 0 being what you want to achieve. All of Megan's were either a 2 or 3. She said that ideally her numbers will start changing by the 3rd treatment. She warned me that Megan could be extremely hungry and tired as a result of the treatment. She didn't appear to have either. She did take a 1.5 hour nap and woke up unhappy, like she didn't get enough sleep. She was very hungry at dinner and started yawning a lot an hour before bedtime so we put her down about 30 minutes early. Maybe she had a delayed reaction.
Saturday, August 2, 2014
Where's my enzyme??
Tonight was the first night we didn't give Megan her new enzyme. We had to do this so we can have her tests run in a couple of days. I was dreading this because the enzyme has made her feel so much better and I felt like it would be mean to take that away from her.
It has already been much worse than I expected. She was restless and aggressive before bed. She was trying to get relief by kneeing herself in the mouth (her new thing in bed since she can't get to herself with her hands). She took a 2.5 hour nap and woke up late so I knew she wasn't going to be thrilled about going to bed but I wasn't prepared for an hour and 10 minutes of screaming and crying. And such a sad, I am in pain, cry too.
I can only imagine how confused and upset she must be to be in pain again. It was very difficult to sit through knowing that she has at least 3 more days until we can give her the enzyme again.
It has already been much worse than I expected. She was restless and aggressive before bed. She was trying to get relief by kneeing herself in the mouth (her new thing in bed since she can't get to herself with her hands). She took a 2.5 hour nap and woke up late so I knew she wasn't going to be thrilled about going to bed but I wasn't prepared for an hour and 10 minutes of screaming and crying. And such a sad, I am in pain, cry too.
I can only imagine how confused and upset she must be to be in pain again. It was very difficult to sit through knowing that she has at least 3 more days until we can give her the enzyme again.
Birthday party
Megan had a great birthday party today. She did really well with all of the noise and "chaos". Historically during a big gathering she has needed me; she needs me to be a calming force, she needs me to take her to another room where it is quiet so she can have a break. Well today, she did amazing. She played with everyone and had a great time and because she was outside and I was inside she didn't even see me until time for gifts and cupcake. And then again not until time for lunch.
She got the hang of opening gifts this year. She wanted to stop and play with some things but handled it well when I made her get back in the chair and open something new. She loves her new stacking cups and her talking Olaf.
She really enjoyed her burger for lunch, especially the purple onions. I gave her three mini chocolate cupcakes with vanilla buttercream frosting.
NOTES: 1 Intolerance complex at dinner last night, eyes still doing okay later in the day, slept 10 hours unhappy that she didn't get more. Today will be the first missed dose of IC in preparation for her testing.
She got the hang of opening gifts this year. She wanted to stop and play with some things but handled it well when I made her get back in the chair and open something new. She loves her new stacking cups and her talking Olaf.
She really enjoyed her burger for lunch, especially the purple onions. I gave her three mini chocolate cupcakes with vanilla buttercream frosting.
NOTES: 1 Intolerance complex at dinner last night, eyes still doing okay later in the day, slept 10 hours unhappy that she didn't get more. Today will be the first missed dose of IC in preparation for her testing.
Friday, August 1, 2014
Happy 5th Birthday Little Miss
Happy birthday my sweet girl. You are such a big girl now. You are super affectionate and sweet. You love to give hugs and kisses and snuggles. You don't like it when Sam is upset and will try to comfort him. You like it when he rubs your head and tells you he loves you.
You are so funny and have a great sense of humor. You giggle at the same type of things as mommy. You still LOVE music so much and would love it if there was some playing in the background at all times. You will turn on music and go play with something else and if it stops playing or I turn it off you will immediately stop what you are doing and go turn it back on.
You are figuring things out so quickly these days. You show us on a daily basis that you have learned something new or maybe you are just showing us something that you have known for some time. You are a mystery like that sometimes; you don't let everyone know what you can do.
You like to dance and play chase or hide and seek. You will sit in my lap and read books for hours if I let you. You stop what you are doing, most of the time, when daddy gets home and go to him as quickly as you can to get your hug and kiss.
You love to throw balls and you still think it is funny when someone hits you with one. We play with them in the hallway/entryway downstairs and throw them back and forth. You have gotten very good at throwing with both hands together and with each hand. We also play with cars in the same area and you get a kick out of it when they go zooming by.
You would play outside all day long if you could. You love to swing and slide and climb the stairs. You like to walk by yourself but will reach for our hand if you feel unsure on the uneven surfaces.
I love you so much Megan and am so very blessed that you are my daughter.
You are so funny and have a great sense of humor. You giggle at the same type of things as mommy. You still LOVE music so much and would love it if there was some playing in the background at all times. You will turn on music and go play with something else and if it stops playing or I turn it off you will immediately stop what you are doing and go turn it back on.
You are figuring things out so quickly these days. You show us on a daily basis that you have learned something new or maybe you are just showing us something that you have known for some time. You are a mystery like that sometimes; you don't let everyone know what you can do.
You like to dance and play chase or hide and seek. You will sit in my lap and read books for hours if I let you. You stop what you are doing, most of the time, when daddy gets home and go to him as quickly as you can to get your hug and kiss.
You love to throw balls and you still think it is funny when someone hits you with one. We play with them in the hallway/entryway downstairs and throw them back and forth. You have gotten very good at throwing with both hands together and with each hand. We also play with cars in the same area and you get a kick out of it when they go zooming by.
You would play outside all day long if you could. You love to swing and slide and climb the stairs. You like to walk by yourself but will reach for our hand if you feel unsure on the uneven surfaces.
I love you so much Megan and am so very blessed that you are my daughter.
TUNNELS!
Megan was awake for 13 minutes last night, stirred three other times and went right back to sleep each time and got 12 hours of sleep. Happy birthday to her! I got the eye contact, with alignment when I got her out of bed this morning. I noticed today that I am getting way more eye contact when she is not wearing her glasses.
We went to the park after breakfast this morning and due to the clouds and cool temperature we were able to stay for more than an hour. The kids played in the swings for a while and then when I asked Megan if she wanted to go play on the playground she shook her head yes and clapped. She walked over and played with the bouncy toy for a minute and then made her way to the equipment. She climbed the steps and then bounced at the railing. I quickly noticed that she wasn't afraid of the tunnel like she usually is - she used to stay at least 2' from the tunnel but today it was as if she was ignoring it. So I took her hand and walked her to the tunnel and sat her on the edge. She grinned at me. WHAT?!?!?!?!?! I grabbed my phone and took a picture to show Will because he had just said 2 nights ago that he couldn't wait for her to get over the tunnel fear so that she could enjoy the rest of the playground equipment (you can't get to it without going through the tunnel or climbing a ladder).
Sam had already climbed through the tunnel so I had him get back in a little bit and she turned right around and scooted toward him and was just kicking and playing and giggling. She went right through when she wanted to and I had to have Sam hold her arm to be sure she wouldn't approach the open area while I quickly made my way through the tunnel. She climbed the stairs and went down the twisty slide like a pro. She did this one more time with me frantically chasing her through the tunnel and then the next time once she started through the tunnel I jumped down and blocked the opening. I ended up having to climb the pole that time but it was less frantic and scary than trying to chase her through the tunnel.
She had a blast! I had a blast watching her enjoying a whole new freedom. We ate snack on the bench, played some more and then said bye-bye to the playground. After quick errand we came back home and I put Megan into the tunnel we have at home. I had to actually sit her in it and she was trying to get away for the first few seconds and then she was good to go and sat there just inside the edge and played. It is a much smaller tunnel - she can't actually sit up without her head pushing on it so it is taking a little more to get used to.
NOTES: eye contact as soon as out of bed, reflux on way down the stairs this morning, diaper at 1:30, chiro adjustment at appoint yesterday
We went to the park after breakfast this morning and due to the clouds and cool temperature we were able to stay for more than an hour. The kids played in the swings for a while and then when I asked Megan if she wanted to go play on the playground she shook her head yes and clapped. She walked over and played with the bouncy toy for a minute and then made her way to the equipment. She climbed the steps and then bounced at the railing. I quickly noticed that she wasn't afraid of the tunnel like she usually is - she used to stay at least 2' from the tunnel but today it was as if she was ignoring it. So I took her hand and walked her to the tunnel and sat her on the edge. She grinned at me. WHAT?!?!?!?!?! I grabbed my phone and took a picture to show Will because he had just said 2 nights ago that he couldn't wait for her to get over the tunnel fear so that she could enjoy the rest of the playground equipment (you can't get to it without going through the tunnel or climbing a ladder).
Sam had already climbed through the tunnel so I had him get back in a little bit and she turned right around and scooted toward him and was just kicking and playing and giggling. She went right through when she wanted to and I had to have Sam hold her arm to be sure she wouldn't approach the open area while I quickly made my way through the tunnel. She climbed the stairs and went down the twisty slide like a pro. She did this one more time with me frantically chasing her through the tunnel and then the next time once she started through the tunnel I jumped down and blocked the opening. I ended up having to climb the pole that time but it was less frantic and scary than trying to chase her through the tunnel.
She had a blast! I had a blast watching her enjoying a whole new freedom. We ate snack on the bench, played some more and then said bye-bye to the playground. After quick errand we came back home and I put Megan into the tunnel we have at home. I had to actually sit her in it and she was trying to get away for the first few seconds and then she was good to go and sat there just inside the edge and played. It is a much smaller tunnel - she can't actually sit up without her head pushing on it so it is taking a little more to get used to.
NOTES: eye contact as soon as out of bed, reflux on way down the stairs this morning, diaper at 1:30, chiro adjustment at appoint yesterday
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