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.
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