Playing with her trains
Obsessed with her new i touch or "Nora's pink phone"
fun in the snow w/Grandfather
We had a wonderful Christmas in NY with the cousins and grandparents and aunts and the uncle and all of our friends. There was enough snow to go sledding and Santa was able to make it to Mim's house. The getting there and home part was a bit bumpy but we managed not to lose any kids in the process.
We are now home and enjoying our vacation time with Grandma, Grandpa and Aunt Kim. And Alex is on vacation from work so he has been home too! We have lots of fun plans for the next few days.
The day before we left for NY we went to Nora's neurologist and Nora had her final check up. She has been seizure free for 2 1/2 years and off meds for six months with no problems. Her development is great and she is progressing every day. So we have been discharged from the neurology department. Unbelievable. She'll be 4 in a few months and what a crazy 3 + years we have had.
We are so happy that she is such a HAPPY girl. She loves to sing and dance and run and play. She loves to make new friends and is so so so social. She is learning new things every day and we can't wait to see what 2010 brings!
We hope your new year brings you lots of happiness, health and joy.
Thanks for checking in
See you next year!
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.
Thursday, December 31, 2009
Monday, December 7, 2009
Singing and etc.
We have been doing a lot singing lately. We have every Hallmark singing snowman (thanks Mim) and Nora likes to play them all at the same time. Music to the ears I tell ya. But we are playing a lot of holiday songs and singing all day long. We have the tree and lights up. I can't get Nora to stand still for a second with Emma to take any pictures. She hates having her photo taken because she likes to play with the camera so she freaks every time I get it out.
There is a house near us that has a fabulous light show. You can tune your car radio to get the music and watch the lights as they play along. Nora and Emma really liked it. We may have to go back to see it again. Someone had a lot of time on their hands. I can barely make dinner these days.
Alex had sales meetings all last week and this weekend so I was solo 24/7 (even though he was in Seattle, we barely saw him). Hopefully this week will be easier- although our week is chock full of nuts. Girl scouts, recess duty, ballet, dentist appt., doctor appt., teacher appreciation baking, book club, cookie baking, cookie exchange, volunteering, xmas party, speech therapy, the list goes on and on. And on. I should really do some Christmas shopping in there and maybe vacuum a bit. Oy vey.
Thanks for checking in.
Lori
Thursday, November 26, 2009
Wednesday, November 18, 2009
Still here
We are still here. Not much going on. Alex is traveling, I am busy with the girls' schools, ballet, parent council, volunteering, playdates, speech, dentists, etc. etc. etc. Oh, and let me tell you Nora does NOT like people messing with her teeth. I was holding her in a full body restraint and the dentist still couldn't get in there.
Nora has a cold so isn't really sleeping well. I haven't gotten the girls flu shots yet. Vaccines freak me out so I am still undecided. There aren't any H1N1 vaccines around anyway, unless we stand in line for 3 hours. And Nora is super good about waiting in lines, NOT.
I am actually wondering lately if she has an attention issue. She doesn't sit still for longer than a few minutes. Having her sit and eat is crazy. She bounces around from one thing to the next all day long. It's exhausting. For me anyway. I still have concerns about her being on the autism spectrum. If she is, she would get WAY more services than she gets now. We go see her neuro in Dec. so we'll discuss these things then I guess.
Same old stuff going on here.
thanks for checking in
Lori
Nora has a cold so isn't really sleeping well. I haven't gotten the girls flu shots yet. Vaccines freak me out so I am still undecided. There aren't any H1N1 vaccines around anyway, unless we stand in line for 3 hours. And Nora is super good about waiting in lines, NOT.
I am actually wondering lately if she has an attention issue. She doesn't sit still for longer than a few minutes. Having her sit and eat is crazy. She bounces around from one thing to the next all day long. It's exhausting. For me anyway. I still have concerns about her being on the autism spectrum. If she is, she would get WAY more services than she gets now. We go see her neuro in Dec. so we'll discuss these things then I guess.
Same old stuff going on here.
thanks for checking in
Lori
Monday, November 9, 2009
Me and me
Me May 2009
Me-Fall 1971 (6-9 months?)
One of the blogger dads-Ken- who's blog I read is having a contest, to show a picture of me when I was a baby and now. check out Blogzilly.
Alex just ordered a photo scanner. We haven't had one that works in a while. This is the only baby pic I could find. I'll have to upload some from the '80's
Thanks for checking in
Lori
Me-Fall 1971 (6-9 months?)
One of the blogger dads-Ken- who's blog I read is having a contest, to show a picture of me when I was a baby and now. check out Blogzilly.
Alex just ordered a photo scanner. We haven't had one that works in a while. This is the only baby pic I could find. I'll have to upload some from the '80's
Thanks for checking in
Lori
Saturday, November 7, 2009
Rain Rain Go Away
Thursday, October 29, 2009
Halloween
We went to a costume party last weekend. Alex and I were the local burger joint- burger flippers. Emma was Hermione Granger and Nora was a grumpy witch. She refused to wear a hat and the dress kept riding up. We are hoping to have her be Old MacDonald/farmer on Sat. She has a farmer hat she'll wear and I ordered some overalls and got her a checked shirt. Hopefully the overalls will show up today. If not, she'll just be in orange and black. She could care less about a costume.
I went on a field trip with Emma's class yesterday to another pumpkin patch. Nora has a costume parade at school tomorrow and Emma's class is having a Halloween party. Sat. Emma has ballet then the local businesses have a trick or treat during the day. Then out to the neighborhood Sat. night. Busy busy busy. Never ending Halloween.
Hope everyone has a candyrific holiday!
Lori
Friday, October 23, 2009
Pumpkin Patch
Yesterday we went to the pumpkin patch with Mim, Grandfather, Lucas, Daddy, Mommy, Emma and Nora. Everyone had fun tromping through the mud, getting lost in the corn maze, feeding the alpacas and petting chickens. Nora gets a bit wild when there are no set boundaries so she was running wild through the maze and we'd have to bushwack to go get her. And the mud made for some fun slipping. We got some good pumpkins to carve today. It was a fun day.
We have had a busy week with Mim and Grandfather. Pumpkin patch, Pacific Science Center, mass at Holy Rosary, Farmers market, Alki beach, Magnusen Park, haircuts, EEU ice cream social, saw orcas swimming in the sound off Alki, and lots of eating! They go back to NY tomorrow. I am sure they will be glad to get a rest! These girls keep them on their toes! Thanks for coming Mim and Grandfaddy. We love you!!!
Lori
Thursday, October 15, 2009
no more naps
Emma and an oatmeal chocolate chip cookie
Farmer Nora?
Nora has always taken a 2 hour nap but lately she wasn't going to bed until 9:30-10 PM or waking up at 5:30 am. So I have decided it is time to do away with naps. Kinda freaks me out. Those were 2 very nice peaceful hours to myself. But now she goes to bed 7:30 and wakes up 6:30 or 7 AM. Much better all around. And now we can do some fun things together in the afternoon and I am not tied to the house.
Mim and Grandfather are coming in 2 days. Very exciting stuff. It should be a fun filled week. Hopefully the rain will stay away.
Nora has been tolerating wearing a hat so maybe she'll be Old MacDonald for Halloween. Or a cowgirl. Or just wear orange and black. She's a tricky one and doesn't like to wear costumes. Emma is going to be Hermione Granger from Harry Potter. I need to find a yellow/maroon scarf for her somewhere. Wish I knew how to knit.
Thanks for checking in!
Farmer Nora?
Nora has always taken a 2 hour nap but lately she wasn't going to bed until 9:30-10 PM or waking up at 5:30 am. So I have decided it is time to do away with naps. Kinda freaks me out. Those were 2 very nice peaceful hours to myself. But now she goes to bed 7:30 and wakes up 6:30 or 7 AM. Much better all around. And now we can do some fun things together in the afternoon and I am not tied to the house.
Mim and Grandfather are coming in 2 days. Very exciting stuff. It should be a fun filled week. Hopefully the rain will stay away.
Nora has been tolerating wearing a hat so maybe she'll be Old MacDonald for Halloween. Or a cowgirl. Or just wear orange and black. She's a tricky one and doesn't like to wear costumes. Emma is going to be Hermione Granger from Harry Potter. I need to find a yellow/maroon scarf for her somewhere. Wish I knew how to knit.
Thanks for checking in!
Friday, October 9, 2009
Busy busy busy
We have been very busy lately. Emma has been doing cross country and has had meets every Sunday. We have pics but not sure where. Last weekend we went to U of Wash. to support our good friend Luke and his family in the Autism Walk. We had to leave early so Emma could go to ballet. I am of course not in the picture because I always TAKE the pictures.
Nora has been going to school. Emma has been going to school. I have been volunteering, doing recess duty, co-chairing the parent council at the EEU, getting my car fixed, making dinner and other exciting stuff like that. Wish I had more news.
In one week, Mim and Grandfather will be visiting. I am sure we'll have plenty of excitement then so stay tuned...
Lori
Nora has been going to school. Emma has been going to school. I have been volunteering, doing recess duty, co-chairing the parent council at the EEU, getting my car fixed, making dinner and other exciting stuff like that. Wish I had more news.
In one week, Mim and Grandfather will be visiting. I am sure we'll have plenty of excitement then so stay tuned...
Lori
Saturday, September 26, 2009
school and other random stuff
Emma likes to wear matching pj's with Nora.
The first week of school has gone quite smoothly for Nora. Nora's bus driver is great. He is super nice and really helpful. The bus is supposed to be at our house 20 minutes earlier but due to his other bus route, he doesn't get to our house until 8:15 which is the exact time I am supposed to be dropping Emma off at school. Hopefully next week he'll be able to come a bit earlier. He is trying to change the route. And he gave me his cell number in case I need to get in touch with him. How nice is that?
Nora's first day in class was hectic. The class was a tad rambunctious. there were a lot of new faces. Nora was in the afternoon class last year and now is in the morning. I went in and observed M & F. She did great. She looks like such a big girl. I am glad she is back with the same teacher. There are about 5 or 6 adults in the classroom with 16 kids. There are usually a few aides (teaching students from UW), an OT or SLP and the teacher and assistant teacher. The ratio is 8 typical to 8 special needs kids. I am so happy school is back in session!!!
It's been a long week. Alex has been gone all week. He is in Asia for work and gets back Sun. I am taking a girls night away tonight so Grandma is staying with the girls. Yahoo!! Emma has a cross country meet on Sun. She is on the team for school. I asked her how she likes it and she said "I like everything but the running part". I guess she won't be on the Olympic team for running. Oh well.
I have no pictures from school. I forgot to bring my camera. And I have been trying to get Nora on video playing with her doll house but she stops when she sees the camera. I have to try to be stealthy.
Thanks for checking in.
Lori
The first week of school has gone quite smoothly for Nora. Nora's bus driver is great. He is super nice and really helpful. The bus is supposed to be at our house 20 minutes earlier but due to his other bus route, he doesn't get to our house until 8:15 which is the exact time I am supposed to be dropping Emma off at school. Hopefully next week he'll be able to come a bit earlier. He is trying to change the route. And he gave me his cell number in case I need to get in touch with him. How nice is that?
Nora's first day in class was hectic. The class was a tad rambunctious. there were a lot of new faces. Nora was in the afternoon class last year and now is in the morning. I went in and observed M & F. She did great. She looks like such a big girl. I am glad she is back with the same teacher. There are about 5 or 6 adults in the classroom with 16 kids. There are usually a few aides (teaching students from UW), an OT or SLP and the teacher and assistant teacher. The ratio is 8 typical to 8 special needs kids. I am so happy school is back in session!!!
It's been a long week. Alex has been gone all week. He is in Asia for work and gets back Sun. I am taking a girls night away tonight so Grandma is staying with the girls. Yahoo!! Emma has a cross country meet on Sun. She is on the team for school. I asked her how she likes it and she said "I like everything but the running part". I guess she won't be on the Olympic team for running. Oh well.
I have no pictures from school. I forgot to bring my camera. And I have been trying to get Nora on video playing with her doll house but she stops when she sees the camera. I have to try to be stealthy.
Thanks for checking in.
Lori
Thursday, September 17, 2009
Preschool take me away
Nora has been doing some pretend play with the doll house. She calls it the dog house because there is a dog and cat that she likes to play with. This is a good step in her development. She also said a 6 word sentence the other day "Plane fly up in the sky" Pretty good my little chatterbox.
Even though she is making so many gains, I can't wait for her school to start. Monday morning the bus will pick her up. Not a moment too soon. It has been a long summer for Nora and me. She only had 4 days of summer camp in July. Other than that, it has been a lot of mommy and Nora time since her last day of school in June. I am starting to go a bit batty. I love her to bits but man I need a little space. Shouldn't the bathroom be a one person place? Not for Nora. She is constantly at my side and needs A LOT of attention. If you don't pay attention to her, she screams, pulls on me, cries, climbs on me, etc. And she is constantly singing and talking. She has a few obsessive behaviors that get a bit old after awhile. "What's a cow say? Mooooo. What's duck say "quack quack" and so on through every farm animal. For hours if I'd let her. I am ready for a break. She is at school M-F for 2 hours and 15 minutes and the bus is probably a 30 min ride each way. Aaaahhhhh. It will be a nice break for both of us.
Stay tuned for first day of school news!
Lori
Even though she is making so many gains, I can't wait for her school to start. Monday morning the bus will pick her up. Not a moment too soon. It has been a long summer for Nora and me. She only had 4 days of summer camp in July. Other than that, it has been a lot of mommy and Nora time since her last day of school in June. I am starting to go a bit batty. I love her to bits but man I need a little space. Shouldn't the bathroom be a one person place? Not for Nora. She is constantly at my side and needs A LOT of attention. If you don't pay attention to her, she screams, pulls on me, cries, climbs on me, etc. And she is constantly singing and talking. She has a few obsessive behaviors that get a bit old after awhile. "What's a cow say? Mooooo. What's duck say "quack quack" and so on through every farm animal. For hours if I'd let her. I am ready for a break. She is at school M-F for 2 hours and 15 minutes and the bus is probably a 30 min ride each way. Aaaahhhhh. It will be a nice break for both of us.
Stay tuned for first day of school news!
Lori
Wednesday, September 2, 2009
Big First Grader
Emma started her new school yesterday. First grade. She didn't seem too undone about starting a new school. She didn't have much to say when she got home. It's like pulling teeth to try to find out what she does all day. She doesn't really understand the whole uniform thing. "Why can't I wear purple tights, flip flops and a flowered shirt with my skirt?" She has a very interesting style. But I am sure she'll get used to it.
And we all have to get used to an early start to our day. Emma's school starts at 8:25 and Nora's starts at 8:45 so her bus will probably pick her up about 8. That means I have to get up earlier. Ug.
Nora gets to go in 3 more weeks. Can't wait!
Thanks for checking in
Lori
And we all have to get used to an early start to our day. Emma's school starts at 8:25 and Nora's starts at 8:45 so her bus will probably pick her up about 8. That means I have to get up earlier. Ug.
Nora gets to go in 3 more weeks. Can't wait!
Thanks for checking in
Lori
Thursday, August 27, 2009
Friends
There are people out there in the blogisphere that I know well because of our connection through our IS kids. They may not know me or Nora's story but I still feel connected to their stories. And even though I have never met Bennett I am thinking about him today. He is having brain surgery to rid him of daily seizures. Just like Sophie did and how Trevor will soon. Bennett may also have a tumor which is a whole 'nother ball of wax.
It takes my breath away to think about Bennett's parents waiting to get their little boy back. How hard it has to be. Unimaginable. Good luck Bennett!
It takes my breath away to think about Bennett's parents waiting to get their little boy back. How hard it has to be. Unimaginable. Good luck Bennett!
Tuesday, August 25, 2009
like a fish
Emma had a fun swim party on Sunday. Nora LOVES the water. She had a fit while we waited for our turn in the pool. She wanted in and wanted it now. She was able to stand in the shallow area and had so much fun. She puts her face in and holds her breath. It is time for swim lessons I think.
School starts on the 21st for Nora. She is ready for it and I am ready for it. It's been a fun summer but Nora has been lacking some structure. I am ready for her to keep moving on in development and she does so well in school. It is time for potty training (I hope). My back is killing me from lifting her to change her diaper. She's a big girl. And she still won't drink from an open cup or straw. Only her sippy cup. And not any sippy cup, just the playtex kind. So if I forget a cup, she won't drink. Hopefully Teacher Jessica can remedy that this year.
Emma starts a new school this year. After lots of debate, we are putting her into a private Catholic school. It has a great reputation and we think she'll do well. And the uniforms are so cute.
Thanks for checking in.
Lori
Monday, August 17, 2009
Birthday girl
Emma Aug. 2003
Emma and friend Janey on Emma's 6th birthday
Emma with cousins Brynna and Katie in NY
Friday was Emma's 6th birthday. She'll start 1st grade soon. We had her check up at the pediatricians today and saw a brand new little guy who was a preemie too. He weighed 3 lbs 9 oz. Emma was 4 lbs. 5 oz. when she was born but went down to 3- 11. I told her she was that little when she was born. It is so hard to believe she is 6. Time flies. We will have her friend birthday party next weekend. Pool party time!
Nora is great. No changes since she has been off of her medication. Her school doesn't start until Sept.21. It's been a long break. I am sure she'll be glad to get back.
Thanks for checking in
Lori
Sunday, August 9, 2009
All done with meds
Norsie
Cousin Katie and Emma at the Saratoga children's museum
Cousin Katie and Emma at the Saratoga children's museum
Emma and Brynna
Emma and Zoe
Nora and Grandfather
Mim and Nora
Emma and Zoe
Nora and Grandfather
Mim and Nora
Today was Nora's last day of her seizure medication. 5 mg. of Lamictal. Now she is med free. Kinda scary. She's been on medication since April 25, 07 when she was put on ACTH and zonegran. And she's been seizure free since May 2, 07.
In the past 2 years she has learned to walk, run, talk, clap, wave, watch Elmo, say mommy, sleep in a bed, not need a car seat on a plane, go down stairs unassisted, feed herself with a fork, pretend, give kisses and hugs, say I love you, know her letters and sounds, read books and just be happy. She is such a happy little girl. She likes to go outside, run and play. Everyday is so much fun for her. We are so thankful.
We have been home from NY for a week. We jumped right back into it. Emma had swim lessons all week, Nora speech, I got ready to host a baby shower yesterday. Alex went back to work. And our computer was fixed finally. Still have some tinkering to do but it's up and running. Phew.
I will post more soon. Emma turns six on Friday! yikes
Thanks for checking in
Lori
Wednesday, July 29, 2009
New York
I have no pictures to post because I am still in NY. And our home computer (brand new computer) is having issues. They wiped the hard drive so we have to re download all of our files. Fun stuff.
Anyway, we are here in upstate visiting my family. And I went to my 20 yr high school reunion. Very back to the future for me but fun. Got to see some old friends. Like my very best friend from grade school-Lori H. And my best bud Z. Got to meet his wee one and wife. Hope to see some more long lost friends before I go.
The girls are loving it. Cousins, grandparents, friends. Fun in the humidity. Ug. so hot. I am not used to it.
I will update more when we get back to Seattle. I am flying back with the girls on Sun. Alex already went back.
Happy summer
Lori
Anyway, we are here in upstate visiting my family. And I went to my 20 yr high school reunion. Very back to the future for me but fun. Got to see some old friends. Like my very best friend from grade school-Lori H. And my best bud Z. Got to meet his wee one and wife. Hope to see some more long lost friends before I go.
The girls are loving it. Cousins, grandparents, friends. Fun in the humidity. Ug. so hot. I am not used to it.
I will update more when we get back to Seattle. I am flying back with the girls on Sun. Alex already went back.
Happy summer
Lori
Thursday, July 2, 2009
summer fun
I can't believe it's July already. Emma had her dance recital and did a great job. It was really a great performance. All the dancers work so hard all year and it is amazing. Some of the seniors had been dancing since they were 3. Emma is taking a circus camp this week. They do tight rope, acrobatics, trampoline, ropes, tumbling, juggling, etc. No clown stuff though. She seems to be enjoying it.
Nora has been trucking along. She is showing no signs of side effects from weaning her off Lamictal. She is down to 30 mg/day from 70/day. Still talking all day- every second of the day. She wakes up and yells from her room "Mooooommmmmmmmyyyyy, where are you?" "Watch Sesame Street?" She went from giving a hoot about TV to an Elmo junkie.
Nora and Emma go to the summer camp at the EEU (Nora's awesome school) next week. They should have fun. Then we head to the OR coast for some family fun. Then home for 2 days and off to NY for my reunion and some family time. The girls and I will be there for 2 1/2 weeks. Then back in Aug. and Emma's 6th bday. Wow. Time flies.
Thanks for checking in. I'll try to get more exciting pictures soon.
Lori
Sunday, June 21, 2009
Last days
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