I emailed our neuro the other day wondering if I could meet with him to discuss weaning Nora off her anti seizure medication, Lamictal. She has not had an infantile spasm type spasm since May of 2007 and she has never had another type of seizure. I think he likes to have kids on meds for 2 years after seizures are controlled but I don't want her on them just because. There should be a reason right? Anyway, we need to have an EEG before we meet with him so Nora will now have her 4th or 5th EEG. Can't quite remember. SO another day of craziness for us on Aug. 6th. I am supposed to wake her up at 4 am so she will be good and tired at 1:00 pm. Huh. Great. SO not only will she be sleep deprived, I will too. Hopefully it will show that her brain activity looks "normal" and we'll be able to be med free. She'll never have a normal eeg due to her cysts and agenisis of the corpus callosum. But normal enough.
She put 2 words together for the speech therapist on Tues. She said "go-go mo-mo" indicating she wanted the hokey pokey Elmo to go. She only repeated it after her therapist said it but she did say it!
Emma and I had a good day on Thursday. Grandma watched Nora and I took Emma to her art class and got to go to the Y. We then went out for lunch. Then we spent the whole day at the pool with Lisa and Lucas. Alex met us there with Nora and a pizza and a evening swim. It was a very good day indeed. I don't get that many opportunities to spend the whole day with Emma alone and it was so nice to give her my whole attention.
We had some friends over today to play which was fun. I joined Facebook and have gotten messages from some long lost friends. Especially my really good friend Zeth from high school who I lost touch with. It was so good to hear from him and reconnect. Weird how you can not talk to someone for 10 years and still feel like you are still good friends. Good weird.
thanks for checking in.
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
Friday, July 25, 2008
Wednesday, July 16, 2008
Back from vacation
We had a great trip to Seaside, OR last Wed.-Sun. Even 2 sick girls didn't stop us from having fun at the beach. On the 4.5 hours down, Emma didn't feel so hot and about half hour left of the trip, she threw up. Luckily she made it into a bag. She had 103* temp. Poor girl. She had a fever and the pukes on and off for the first 2 days. But then she felt great and Nora started to feel very hot. So she was up and down with a 103* temp for the last 2 days. Luckily she didn't have any night terrors while we were there.
She saved up for the night we got home. She had a short nap on the way home in the car and was exhausted. She went to bed for about an hour and then was screaming non stop for about an hour. I was about to go to the ER thinking it was an ear infection or something. But she calmed down and played for a bit. Then slept the rest of the night.
By Monday am she seemed fine and no fever so I took her to school and made a dr. appt. for later that morning. Turns out she has tons of sores all in her mouth and throat. They thought it might be hand and mouth disease but it's probably just viral. Nothing to do for it but wait it out. She's been fine ever since. She went to speech and school yesterday on no nap and was fine. SO..... all's well that ends well.
School is going well. She is in class with the group of peers and one or two other special needs kids on M/W. T/Th she gets ABA therapy. All of the kids in her group have some level of autism. She is just lucky and gets extra time because I pushed for it. When she turns 3 she won't qualify for it anymore but it has really helped. We may have to find private therapy. I think some of the grad students from UW who work at her school may do it on the side.
Nora can do the movements to wheels on the bus, itsy bitsy spider, twinkle twinkle. She can sign please, more, milk, all done. She can wave bye bye. I went to the Y yesterday and there was a women at the child care that I haven't' met yet. I briefly told her that Nora was delayed yada yada yada and went on my way. When I picked her up, she asked what Nora meant with her hands up in the air. I was like "It's the spider song, duh!" well not duh but come on, anyone can figure that out!!!! She's also been repeating some words-mama, dada (which is ga-ga for some reason, she can say the d sound), no-no, and Emma. But she doesn't really do any on her own except mElmo. She loves her Melmo.
Poor Emma, I didn't sign her up for camp this week b/c I thought she'd want a break but she just ends up tagging along with me. Next week she has 2 days of art camp and then she has zoo camp in Aug. We are having her 5th birthday party at the YMCA on the 9th. Then we are off to NY for 10 days to see all my peeps in Albany. Then Kindergarten starts. Yikes.
It was a long one and I have to get the girls fed and out the door in a half hour to get Nora to school. And shower. Hmmm...
Thanks for checking in
Lori
She saved up for the night we got home. She had a short nap on the way home in the car and was exhausted. She went to bed for about an hour and then was screaming non stop for about an hour. I was about to go to the ER thinking it was an ear infection or something. But she calmed down and played for a bit. Then slept the rest of the night.
By Monday am she seemed fine and no fever so I took her to school and made a dr. appt. for later that morning. Turns out she has tons of sores all in her mouth and throat. They thought it might be hand and mouth disease but it's probably just viral. Nothing to do for it but wait it out. She's been fine ever since. She went to speech and school yesterday on no nap and was fine. SO..... all's well that ends well.
School is going well. She is in class with the group of peers and one or two other special needs kids on M/W. T/Th she gets ABA therapy. All of the kids in her group have some level of autism. She is just lucky and gets extra time because I pushed for it. When she turns 3 she won't qualify for it anymore but it has really helped. We may have to find private therapy. I think some of the grad students from UW who work at her school may do it on the side.
Nora can do the movements to wheels on the bus, itsy bitsy spider, twinkle twinkle. She can sign please, more, milk, all done. She can wave bye bye. I went to the Y yesterday and there was a women at the child care that I haven't' met yet. I briefly told her that Nora was delayed yada yada yada and went on my way. When I picked her up, she asked what Nora meant with her hands up in the air. I was like "It's the spider song, duh!" well not duh but come on, anyone can figure that out!!!! She's also been repeating some words-mama, dada (which is ga-ga for some reason, she can say the d sound), no-no, and Emma. But she doesn't really do any on her own except mElmo. She loves her Melmo.
Poor Emma, I didn't sign her up for camp this week b/c I thought she'd want a break but she just ends up tagging along with me. Next week she has 2 days of art camp and then she has zoo camp in Aug. We are having her 5th birthday party at the YMCA on the 9th. Then we are off to NY for 10 days to see all my peeps in Albany. Then Kindergarten starts. Yikes.
It was a long one and I have to get the girls fed and out the door in a half hour to get Nora to school. And shower. Hmmm...
Thanks for checking in
Lori
Monday, July 7, 2008
Change it up a bit
I am changing the format of Nora's blog just because I needed a change.
Nora started summer school today with a whole new group of kids. We switched days so she now goes M/W to class and T/Th to one on one. She did just fine. She's one of the big kids now. She is still the most needy kid in class as far as I can tell. It seems that 2 of the kids have a slight speech delay and one boy has autism but he can talk. I have a good group of parent friends from Nora's old class so it is a bit strange with all the new parents. I have to go over Nora's story with all the new people. Tiring.
I took Emma and Nora to the park and ran into one of the guys who works with Alex. I don't think Alex shares as much info as I do. So after chasing Nora as she escapes from my view into the street (for the 2nd time) while I was helping Emma go down the pole, I gave up and was packing it in. I then had to explain Nora's deal with Alex's friend who has a daughter 9 months older than Nora who is potty trained, sliding down with pole by herself (she's 3!) and talking up a storm.
It is so frustrating because when you look at Nora, she looks like a big girl (she and Emma weigh the same) but she is just a baby in a big body. She babbles and eats sand like a 1 year old. People see her at the store and talk to her and expect a response from such a big girl. She just does her itsy bitsy spider hands and wants you to sing for her. Or she grabs strangers legs at the park. She's very friendly for sure. Or we go to a party where not everyone there realizes her needs and knows to look out for her so we end up chasing her around the whole time instead of relaxing. I don't know what we are going to do this week when we go to the beach in Oregon. She just runs and runs and doesn't care if she goes into the street or water or in front of a bike. She's a walking collision waiting to happen. Should be interesting.
So when I figure out how to put photos into my actual post, hopefully there will be more changes to the blog.
Thanks for checking in
Lori
Nora started summer school today with a whole new group of kids. We switched days so she now goes M/W to class and T/Th to one on one. She did just fine. She's one of the big kids now. She is still the most needy kid in class as far as I can tell. It seems that 2 of the kids have a slight speech delay and one boy has autism but he can talk. I have a good group of parent friends from Nora's old class so it is a bit strange with all the new parents. I have to go over Nora's story with all the new people. Tiring.
I took Emma and Nora to the park and ran into one of the guys who works with Alex. I don't think Alex shares as much info as I do. So after chasing Nora as she escapes from my view into the street (for the 2nd time) while I was helping Emma go down the pole, I gave up and was packing it in. I then had to explain Nora's deal with Alex's friend who has a daughter 9 months older than Nora who is potty trained, sliding down with pole by herself (she's 3!) and talking up a storm.
It is so frustrating because when you look at Nora, she looks like a big girl (she and Emma weigh the same) but she is just a baby in a big body. She babbles and eats sand like a 1 year old. People see her at the store and talk to her and expect a response from such a big girl. She just does her itsy bitsy spider hands and wants you to sing for her. Or she grabs strangers legs at the park. She's very friendly for sure. Or we go to a party where not everyone there realizes her needs and knows to look out for her so we end up chasing her around the whole time instead of relaxing. I don't know what we are going to do this week when we go to the beach in Oregon. She just runs and runs and doesn't care if she goes into the street or water or in front of a bike. She's a walking collision waiting to happen. Should be interesting.
So when I figure out how to put photos into my actual post, hopefully there will be more changes to the blog.
Thanks for checking in
Lori
Tuesday, July 1, 2008
Visitors and climber
Mim and Katie have been here since Friday. They go home on Thurs. ;( Emma and Nora are so excited to have their cousin (and Mim) here. Emma loves all the extra attention and someone new to play with. Katie is great to have around. Nora loves her too.
Nora decided to scare Mim to death last night while Alex and I went for sushi. Nora has apparently now figured out how to climb (or fall) out of her crib. Mim heard a big thunk and Nora was sitting on the hardwoods next to her crib crying. We had just moved her room to the guest room which has no carpeting. Needless to say, we went out to buy a rug today. Hopefully that will be a softer landing if she keeps up the shenanigans. We still have to paint and make it girly but it will be nice for her to have her own room and Emma can have her own. Now Alex just needs to finish the construction in the basement so we have a real guestroom.
Nora is still doing well in speech. She has started signing for please. She has "more" down to a fist punching the other hand. (it normally looks like fingertips touching) She means business.
Have a happy 4th! Our 6th year anniversary is on the 5th. Seems so long ago and it's only been 6 years! Thanks for checking in
Lori
Nora decided to scare Mim to death last night while Alex and I went for sushi. Nora has apparently now figured out how to climb (or fall) out of her crib. Mim heard a big thunk and Nora was sitting on the hardwoods next to her crib crying. We had just moved her room to the guest room which has no carpeting. Needless to say, we went out to buy a rug today. Hopefully that will be a softer landing if she keeps up the shenanigans. We still have to paint and make it girly but it will be nice for her to have her own room and Emma can have her own. Now Alex just needs to finish the construction in the basement so we have a real guestroom.
Nora is still doing well in speech. She has started signing for please. She has "more" down to a fist punching the other hand. (it normally looks like fingertips touching) She means business.
Have a happy 4th! Our 6th year anniversary is on the 5th. Seems so long ago and it's only been 6 years! Thanks for checking in
Lori
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