Megan has been sleeping through the night again the past 2 nights. She is still waking up for a few minutes a couple of times a night but that is common for her. She is so happy during the day because she feels normal again. This weekend we took them to a couple of parks and she did great with walking and climbing and sliding. She is even going down slides that she wouldn't before, like a tunnel slide (she is not fond of tunnels) and a really big corkscrew slide; and she is loving them when she does it.
I had Megan pick out her gift for Will a couple of weeks ago. I had her choose between several t-shirts and she picked one that said "Dad: This is what a hero looks like". There were others that were more cartoonish but this is the one she wanted. When I handed it to her to give to Will yesterday she got so excited and started clapping and dancing and she handed it to him. She remembered the shirt and was so happy to give it to her daddy.
Monday, June 17, 2013
Sunday, June 16, 2013
Wonderful day and night
Megan had a wonderful day yesterday. She had gotten enough sleep (7.5 hrs) that she was up for walking and climbing and playing yesterday morning and then got a 2.5 hour nap so she was a happy camper yesterday afternoon too.
Last night Megan was asleep at 8:05 and woke up at 10 for a few minutes and then slept until almost 7. She got a normal night's sleep and you can tell it this morning. She is so happy and acting like herself including eating and eating and eating this morning.
Last night Megan was asleep at 8:05 and woke up at 10 for a few minutes and then slept until almost 7. She got a normal night's sleep and you can tell it this morning. She is so happy and acting like herself including eating and eating and eating this morning.
Friday, June 14, 2013
Megan's night
Megan woke up after a couple of hours last night because she had a dirty diaper. She will not sleep through the night with one so I changed her when she woke up. Based on how things have been going I knew she would have a hard time with me putting her back down. 3 hours later she was still upset so I took her downstairs to try to rock her to sleep.
It took quite a while for me to get her to sleep because she was just wanting to play but it did happen after about an hour. We moved her mattress to the living room floor so I could move her out of my lap so she could be more comfortable but as soon as I tried to sit up with her she woke up. I tried to rock her back to sleep but she wasn't having it so I put her in bed and thankfully after only 2 or 3 minutes she was asleep and she slept for 5 hours straight. So she got about 7-71/2 hours sleep total last night and boy you can tell this morning. She is happy, and she is currently happily playing by herself (not something she has wanted to do in a long time).
So, in case you were wondering Megan had no twitching or jerking of any kind while sleeping in my arms.
Will and I have our theory about what caused Megan to have seizures. We did a lot of research and Megan had several triggers occur right before they started. Megan got overheated several days in a row, followed by lack of sleep (exhaustion) which led to not wanting to eat or drink causing dehydration. Any one of those items can trigger a seizure and she had all three. I haven't discussed this with her doctor, but plan to when she calls to discuss Megan's EEG results either today or Monday.
It took quite a while for me to get her to sleep because she was just wanting to play but it did happen after about an hour. We moved her mattress to the living room floor so I could move her out of my lap so she could be more comfortable but as soon as I tried to sit up with her she woke up. I tried to rock her back to sleep but she wasn't having it so I put her in bed and thankfully after only 2 or 3 minutes she was asleep and she slept for 5 hours straight. So she got about 7-71/2 hours sleep total last night and boy you can tell this morning. She is happy, and she is currently happily playing by herself (not something she has wanted to do in a long time).
So, in case you were wondering Megan had no twitching or jerking of any kind while sleeping in my arms.
Will and I have our theory about what caused Megan to have seizures. We did a lot of research and Megan had several triggers occur right before they started. Megan got overheated several days in a row, followed by lack of sleep (exhaustion) which led to not wanting to eat or drink causing dehydration. Any one of those items can trigger a seizure and she had all three. I haven't discussed this with her doctor, but plan to when she calls to discuss Megan's EEG results either today or Monday.
June 13 update email
Email sent June 13:
Full story below, but for those who don't have time to read a long email Megan got sleep last night and preliminary EEG results showed no seizure activity - Prayer works!
Megan had her EEG yesterday and it was not a fun experience. She was exhausted and didn't want to have all of the stuff on her head and of course wouldn't go to sleep. She pretty much screamed through the test and the removal of everything. Her neurologist office is located next door to the testing facility so after the test I walked over to talk to her nurse.
I know that is not what you are supposed to do but I didn't care I did it anyway. Because of the last minute scheduling of her EEG we weren't given a packet explaining everything to us so we had no information regarding how long things would take. The nurse told me that it usually takes 1 week for results but that they put an expedite on Megan's and it would be 1-2 days. They had told us (we talked several times yesterday before the test) that if Megan had seizure activity again for more than 5 minutes that we needed to take her to the ER; so I asked her if we were supposed to take her to the ER every time she slept until we heard back from them. She said she would talk to the doctor and get back to me.
I went to bed when we got home and Will took the call. Our instructions were that if we saw her having a seizure we were supposed to wake her up and if waking her didn't stop them then we had to go to the ER. Will and I were both like - SERIOUSLY, wake her up - crazy people we would have been trying to get her to sleep for hours at that point. The other thing she said was that the doctor briefly scanned the results and she didn't see ANY seizure activity. She said that she would still need to thoroughly go through the results so this wasn't final, but just her preliminary thoughts. Megan didn't sleep during the test but they assured us that it would still show activity if it was there.
I know what happened 2 days ago and I KNOW how prayer works. We believe that Megan is healed and therefore nothing is going to show up even after hours of looking over her test. AND we have additional proof of this because here is what happened last night.
Megan finally got to sleep at 9 pm. She woke up at 9:30 (I almost cried at this point) and then in 10 minutes she was asleep again. She went back to sleep on her own for the first time in more than a week. She woke up twice more and went back to sleep in 10 minutes each time. So Megan was able to go back to sleep 3 times last night after not being able to do it at all for a week and the two weeks prior to that it was taking her at least 3 hours to get back to sleep.
She is a different girl this morning. She is more herself, though she is still way behind on sleep and of course still didn't get enough last night but she got more sleep last night than she has for the past 3 or 4 nights combined.
Thank you, thank you for your prayers and support and please keep praying for Megan and for all of us.
On a side note Sam spent the day with my good friends yesterday while we were at the doctor's office. They ended up keeping him until bedtime so that I could get some sleep when we got home. Sam had a blast and got TONS of much needed attention.
Full story below, but for those who don't have time to read a long email Megan got sleep last night and preliminary EEG results showed no seizure activity - Prayer works!
Megan had her EEG yesterday and it was not a fun experience. She was exhausted and didn't want to have all of the stuff on her head and of course wouldn't go to sleep. She pretty much screamed through the test and the removal of everything. Her neurologist office is located next door to the testing facility so after the test I walked over to talk to her nurse.
I know that is not what you are supposed to do but I didn't care I did it anyway. Because of the last minute scheduling of her EEG we weren't given a packet explaining everything to us so we had no information regarding how long things would take. The nurse told me that it usually takes 1 week for results but that they put an expedite on Megan's and it would be 1-2 days. They had told us (we talked several times yesterday before the test) that if Megan had seizure activity again for more than 5 minutes that we needed to take her to the ER; so I asked her if we were supposed to take her to the ER every time she slept until we heard back from them. She said she would talk to the doctor and get back to me.
I went to bed when we got home and Will took the call. Our instructions were that if we saw her having a seizure we were supposed to wake her up and if waking her didn't stop them then we had to go to the ER. Will and I were both like - SERIOUSLY, wake her up - crazy people we would have been trying to get her to sleep for hours at that point. The other thing she said was that the doctor briefly scanned the results and she didn't see ANY seizure activity. She said that she would still need to thoroughly go through the results so this wasn't final, but just her preliminary thoughts. Megan didn't sleep during the test but they assured us that it would still show activity if it was there.
I know what happened 2 days ago and I KNOW how prayer works. We believe that Megan is healed and therefore nothing is going to show up even after hours of looking over her test. AND we have additional proof of this because here is what happened last night.
Megan finally got to sleep at 9 pm. She woke up at 9:30 (I almost cried at this point) and then in 10 minutes she was asleep again. She went back to sleep on her own for the first time in more than a week. She woke up twice more and went back to sleep in 10 minutes each time. So Megan was able to go back to sleep 3 times last night after not being able to do it at all for a week and the two weeks prior to that it was taking her at least 3 hours to get back to sleep.
She is a different girl this morning. She is more herself, though she is still way behind on sleep and of course still didn't get enough last night but she got more sleep last night than she has for the past 3 or 4 nights combined.
Thank you, thank you for your prayers and support and please keep praying for Megan and for all of us.
On a side note Sam spent the day with my good friends yesterday while we were at the doctor's office. They ended up keeping him until bedtime so that I could get some sleep when we got home. Sam had a blast and got TONS of much needed attention.
June 12 email regarding seizures
Email sent June 12:
Megan has been having a difficult time sleeping lately. It started about 6 weeks ago with her waking up multiple times a night for a few seconds and then going back to sleep. It progressed to her also waking up once or twice a week and staying awake for 3-4 hours at a time. The past 2 weeks she has been having difficulty going to sleep (she would fall asleep and immediately wake up crying) and then also waking up for several hours. Four days ago she started waking up at the 2.5 hour mark and screaming/throwing herself around her bed and then never going back to sleep.
On Sunday night I was able to rock her to sleep at 5:30 am and she slept for 30 minutes before my moving around woke her up. Monday night Will had the honors of staying up with her all night and last night it was my turn again. She woke up at the 2.5 hour mark (9:30) and was still awake at 3:00 am. She was going through cycles of trying to go to sleep and just flipping out. We were trying to get her to work through it on her own so that is why I waited so long to intervene.
At 3:00 am I got Megan up and brought her downstairs to try to rock her to sleep. I successfully got her to sleep at 3:45 am and what followed was the most rewarding and difficult thing I have ever done. The instant Megan fell asleep she started twitching in her arm and it woke her up. I was able to get her back to sleep by continuing to rock her. Her arm was twitching a little bit and then her leg and then her head would twitch back and forth. This continued for about 30 minutes until she had a big incident. She gasped and then her entire body went stiff and jerked for 3-5 seconds; and then she was awake. I was able to reposition her so she was comfortable and rock her back to sleep in just a couple of minutes and then it started all over again.
I knew what was happening. It was obvious what had been happening to her for who knows how long. She couldn't get to sleep because her body would twitch and wake her up. She couldn't stay asleep once she had a big jerking episode and then once awake she couldn't get back to sleep. Our daughter is having seizures in her sleep and they are keeping her from getting the sleep she needs.
I managed to get her 1.5 hours of sleep in my arms. I felt honored to be able to help her get some of the sleep she needed; and yet her seizing in my arms was the most difficult thing I have had to endure as a mommy. My instinct was to try to hold her tight so she couldn't jerk around and to rock and rock and rock so that maybe she wouldn't twitch at all. At 5:30 she jerked awake and daylight had started to show through the window we were sitting by and she decided it was time to get up for the day.
I took her up to our bed to lay down with Will for a little bit while I filled him in on what had just happened; and then I laid down to get 2 hours of much needed sleep. I don't remember ever being good at pulling all-nighter's and 38 years old is definitely not a good time to try it again.
First thing this morning I called her neurologist office and they moved her EEG appointment from Monday to this afternoon. They originally did not think that seizures would be what was happening since Megan isn't having any while awake but they scheduled the appointment just to be sure.
I will update everyone when I have more information but we in the mean time we covet your prayers for Megan and for our family.
Megan has been having a difficult time sleeping lately. It started about 6 weeks ago with her waking up multiple times a night for a few seconds and then going back to sleep. It progressed to her also waking up once or twice a week and staying awake for 3-4 hours at a time. The past 2 weeks she has been having difficulty going to sleep (she would fall asleep and immediately wake up crying) and then also waking up for several hours. Four days ago she started waking up at the 2.5 hour mark and screaming/throwing herself around her bed and then never going back to sleep.
On Sunday night I was able to rock her to sleep at 5:30 am and she slept for 30 minutes before my moving around woke her up. Monday night Will had the honors of staying up with her all night and last night it was my turn again. She woke up at the 2.5 hour mark (9:30) and was still awake at 3:00 am. She was going through cycles of trying to go to sleep and just flipping out. We were trying to get her to work through it on her own so that is why I waited so long to intervene.
At 3:00 am I got Megan up and brought her downstairs to try to rock her to sleep. I successfully got her to sleep at 3:45 am and what followed was the most rewarding and difficult thing I have ever done. The instant Megan fell asleep she started twitching in her arm and it woke her up. I was able to get her back to sleep by continuing to rock her. Her arm was twitching a little bit and then her leg and then her head would twitch back and forth. This continued for about 30 minutes until she had a big incident. She gasped and then her entire body went stiff and jerked for 3-5 seconds; and then she was awake. I was able to reposition her so she was comfortable and rock her back to sleep in just a couple of minutes and then it started all over again.
I knew what was happening. It was obvious what had been happening to her for who knows how long. She couldn't get to sleep because her body would twitch and wake her up. She couldn't stay asleep once she had a big jerking episode and then once awake she couldn't get back to sleep. Our daughter is having seizures in her sleep and they are keeping her from getting the sleep she needs.
I managed to get her 1.5 hours of sleep in my arms. I felt honored to be able to help her get some of the sleep she needed; and yet her seizing in my arms was the most difficult thing I have had to endure as a mommy. My instinct was to try to hold her tight so she couldn't jerk around and to rock and rock and rock so that maybe she wouldn't twitch at all. At 5:30 she jerked awake and daylight had started to show through the window we were sitting by and she decided it was time to get up for the day.
I took her up to our bed to lay down with Will for a little bit while I filled him in on what had just happened; and then I laid down to get 2 hours of much needed sleep. I don't remember ever being good at pulling all-nighter's and 38 years old is definitely not a good time to try it again.
First thing this morning I called her neurologist office and they moved her EEG appointment from Monday to this afternoon. They originally did not think that seizures would be what was happening since Megan isn't having any while awake but they scheduled the appointment just to be sure.
I will update everyone when I have more information but we in the mean time we covet your prayers for Megan and for our family.
Proud of herself and Ortho appointment update
At the end of school, a couple of weeks ago, I was talking to Megan's teacher and she told me that Megan had taught one of the other little girls in the room to play with dolls. Megan was the only child who would play with the dolls for most of the year but the last couple of months she taught another little girl so they could play together. I was telling Will about this while Megan was with us and she got the biggest smile on her face and then clapped for herself. She understood what I was telling him and that we were proud of her so she was proud of herself.
Megan had her follow-up ortho appointment last week to look at her trigger finger and her braces. Unfortunately her finger has gotten to the point of hurting her and is getting stuck worse and worse so we were informed that surgery was her only option. We were told we could wait a couple of months but since it is hurting her we decided to do it as soon as possible. She is scheduled for June 20th. The surgery is normally done with just a local but since Megan won't hold still they will have to put her under. Her finger will need to remain bandaged for 3-4 days or until she manages to get it off.
The doctor was impressed with Megan's ankle alignment. He said that when she outgrows her current pair of orthotics that we will downgrade her once again, this time to a pair that goes below her ankles so that all it is doing is keeping her feet straight. After that pair she should be done with the support all together.
Megan had her follow-up ortho appointment last week to look at her trigger finger and her braces. Unfortunately her finger has gotten to the point of hurting her and is getting stuck worse and worse so we were informed that surgery was her only option. We were told we could wait a couple of months but since it is hurting her we decided to do it as soon as possible. She is scheduled for June 20th. The surgery is normally done with just a local but since Megan won't hold still they will have to put her under. Her finger will need to remain bandaged for 3-4 days or until she manages to get it off.
The doctor was impressed with Megan's ankle alignment. He said that when she outgrows her current pair of orthotics that we will downgrade her once again, this time to a pair that goes below her ankles so that all it is doing is keeping her feet straight. After that pair she should be done with the support all together.
Tuesday, June 4, 2013
More parks and water
Two weekends ago we took the kids to the local science museum. They have an indoor play area for kids, a huge metal drum/chimes area outside and a train. Megan had a blast standing and hitting the drums with her stick and of course she loved the train ride. We went back to Pullen Park on Labor Day and when she saw the carousel she let go of Will's hand, walked to the railing and started pointing at it to say she wanted to get on.
This past weekend we found a park that is closer to home than Pullen, has a lot more rides and was seriously less crowded. Megan loved, loved, loved all of the rides: train, carousel, airplane, cars and boats. She would fuss when the rides stopped and she definitely didn't want to leave. We will be spending more time at this park for sure.
We had a neat experience at a local park. A little girl saw Megan and came up and asked me if she went to Pathways Elementary because she recognized her. She said that she likes to push Megan around in the car on the playground. It was very sweet.
Thursday was Megan's end of school party and a little girl who had been out of school for a few weeks due to being in the hospital was back. Megan was so happy to see her she kept trying to give her kisses.
Now that it is warm out we have been spending a lot of time playing in the water table and Megan loves it so much that she won't sit down. She stands at that table so long her little legs start trembling and I have to force her to sit and if I don't take her inside she immediately stands back up. This is great work for strengthening her legs.
This past weekend we found a park that is closer to home than Pullen, has a lot more rides and was seriously less crowded. Megan loved, loved, loved all of the rides: train, carousel, airplane, cars and boats. She would fuss when the rides stopped and she definitely didn't want to leave. We will be spending more time at this park for sure.
We had a neat experience at a local park. A little girl saw Megan and came up and asked me if she went to Pathways Elementary because she recognized her. She said that she likes to push Megan around in the car on the playground. It was very sweet.
Thursday was Megan's end of school party and a little girl who had been out of school for a few weeks due to being in the hospital was back. Megan was so happy to see her she kept trying to give her kisses.
Now that it is warm out we have been spending a lot of time playing in the water table and Megan loves it so much that she won't sit down. She stands at that table so long her little legs start trembling and I have to force her to sit and if I don't take her inside she immediately stands back up. This is great work for strengthening her legs.
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