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, December 31, 2010
Happy New Year!
It's been a while. Nora has been busy traveling. We went to the Turks and Caicos Islands for x-mas with my family. It was amazing. The weather was great, the house beautiful and the ocean warm. Nora had a blast (Emma too) with her cousins and Unker Mark. Mim and Grandfather were there too of course. She only fell in the pool once and learned her lesson. She loved swimming every day. (bathing suit optional)
Our vacation had to end and of course we got stuck in the east coast blizzard in Charlotte overnite. The Holiday Inn was not as nice as our house in TCI. So we got home a day late and celebrated x-mas w/ Alex's mom, dad and sister here in Seattle.
Tuesday was another long day. We were supposed to be at Children's Hospital at 9:30 to start her procedure (and we were on time for a change!) but the dentist was running late so we were stuck waiting until 1:00!!! and no food or drink at all since 6:30 am. Fun stuff.
Nora had been scheduled to go under general anesthesia to have some fillings put in her teeth. She would never sit for an exam let alone drills and such. So... they were planning on putting crowns on her 4 top molars anyway, but ended up ...
pulling one tooth, capping 4 molars, filling 3 other cavities, and doing 2 mini root canals on 2 of the molars. So poor girl was not happy when she woke up.
She seems to be doing better now. Hopefully now that we are able to brush her teeth with minimum effort (we used to hold her down by laying on her and cranking her mouth open) she'll keep her teeth cavity free so we won't have to do this every 6 months!
ANYWAY, here's to a happy and healthy and tooth decay free new year~
Love Nora and Lori
Wednesday, November 17, 2010
Yo Gabs
Monkey slipper socks from Mim
Nora LOVED Yo Gabba Gabba. We had kinda crappy seats but she still danced and wiggled and clapped and sang her little heart out. I think her fave was when they dropped a million balloons from the ceiling and we went and got one. She still has it. She pretends it is a baby and rocks it or has it talk to her (it has a face on it). She is so stinkin' cute.
We have to start looking for kindergarten classes for her. Yow. I am not looking forward to it. The EEU has a K that she may be able to get into but there are limited spots. The Seattle spec. ed. has started integrating all the sp. ed. kids into their home school regular classes with resource room pull outs. Umm yeah, don't think that will work for her. They also have self contained classrooms dispersed throughout the district. It is so hard to know what will be the best place for Nora. I want her to be in pre school at the EEU forever or stay there until graduation.
Alex has been gone since Friday and comes back Sun. Actually hasn't been that bad b/c we've been super busy and Grandma has been helping out every day!
Then on Monday Mim and Grandfather come for Thanksgiving!!! hooray!!!
We can't wait.
Hope you all have a fab turkey day.
Lori
Tuesday, November 2, 2010
Halloween
Saturday, October 23, 2010
Random pictures
Emma's second grade school photo-cute but a goofy side smile
Polaroid app on my phone
My new cowboy boots from TX!
Pumpkin princess
Batgirl!
Dancing in the sun
eating lollipops
We were hoping to go to a pumpkin patch today but we woke up to rain. May just have to go buy one at the store and do some carving today. Emma is getting very excited for Halloween. All else is well in our house.
Thanks for checking in
Lori
Polaroid app on my phone
My new cowboy boots from TX!
Pumpkin princess
Batgirl!
Dancing in the sun
eating lollipops
We were hoping to go to a pumpkin patch today but we woke up to rain. May just have to go buy one at the store and do some carving today. Emma is getting very excited for Halloween. All else is well in our house.
Thanks for checking in
Lori
Friday, October 15, 2010
Madsen bikes
Wednesday, September 29, 2010
Yay for school!
This is our 2nd week of preschool and we are finally back on a schedule. And I finally get a few minutes to shower alone. Nora has a new teacher this year, a new bus driver :( and lots of new friends to meet. She is doing great with potty training-at least peeing in the potty when asked to. She still isn't letting us know when she has to go. And she is still refusing to poop on the potty. But she is staying dry mostly which is a start.
She lost her other top front tooth this weekend so is looking quite cute w/out her teeth. That is 5 total!
We had a great weekend at our friends' house in Friday Harbor on San Juan Island. There were 4 families-9kids and we had a blast.
Emma and I are going to Girls Scout camp for the weekend. She is excited. Hopefully it won't rain!
I'll try to post some pics soon.
Lori
She lost her other top front tooth this weekend so is looking quite cute w/out her teeth. That is 5 total!
We had a great weekend at our friends' house in Friday Harbor on San Juan Island. There were 4 families-9kids and we had a blast.
Emma and I are going to Girls Scout camp for the weekend. She is excited. Hopefully it won't rain!
I'll try to post some pics soon.
Lori
Sunday, September 12, 2010
still waiting
I am still waiting for Nora's pre school to start. One more week to go. We have had a lot of mommy and nora time. We are so ready for some structure in our day. Emma started 2 weeks ago. 2nd grade! Alex left for China yesterday so I have a week solo parenting. That's always fun and totally a piece of cake. Especially when I don't get a 5 minute break from Nora! For 7 days straight! fun times.
I have been trying to get Nora to use the potty all the time but she still freaks out if she has to poop. She won't do it. She refuses to even try. But at least she's staying dry for the most part. I am still putting a pull up on her when we go out so she doesn't have an accident -she doesn't even try to use the pot then. Hopefully school will help get us on track. And the screaming and whining... hopefully that will get left behind as well. Good luck Teacher Laurie!!! New teacher this year. Although she was in Nora's classroom last year as an assistant so Nora is familiar with her.
Nora's new obsession is Oobi. She uses her hands to talk like Oobi all the time. It's pretty funny for a while but she wants us to do it for hours on end. Gets a bit old. And there is something very creepy about the show.
As you can tell I am a bit weary of having Nora 24/7. I love her to pieces but she is a handful. And an earful. The day the bus pulls in front of our house I will be dancing a jig! 3 1/2 hours of quiet all to myself! whoohoo!
I'll post some pics soon. Maybe of a bus!
Lori
I have been trying to get Nora to use the potty all the time but she still freaks out if she has to poop. She won't do it. She refuses to even try. But at least she's staying dry for the most part. I am still putting a pull up on her when we go out so she doesn't have an accident -she doesn't even try to use the pot then. Hopefully school will help get us on track. And the screaming and whining... hopefully that will get left behind as well. Good luck Teacher Laurie!!! New teacher this year. Although she was in Nora's classroom last year as an assistant so Nora is familiar with her.
Nora's new obsession is Oobi. She uses her hands to talk like Oobi all the time. It's pretty funny for a while but she wants us to do it for hours on end. Gets a bit old. And there is something very creepy about the show.
As you can tell I am a bit weary of having Nora 24/7. I love her to pieces but she is a handful. And an earful. The day the bus pulls in front of our house I will be dancing a jig! 3 1/2 hours of quiet all to myself! whoohoo!
I'll post some pics soon. Maybe of a bus!
Lori
Friday, August 27, 2010
Trip to NY
Snuggling with Mim
On the helicopter at Hoffman's Playland
Eating a big lollipop
Hanging out at Uncle Mark's camp in a tent with Katie and Lhara
Emma aka MJ
Emma with "Toady" ( she also found a caterpillar and a dead fish)
We were gone for 2 weeks but it felt like more. We did so much. Even though I don't have any pictures of most of it. I was awful about taking pictures. Partly because every time I bring it out, Nora has a fit. She hates the camera now. She used to love it and yell cheese. AND because I just plain forgot to take pics.
We had a great visit with my folks. We played in the backyard (fenced in thank you very much), swam in the neighbors pool everyday, made s'mores in the fire pit, made Mim's house very messy, went to my brother's house on Loon Lake, had Emma's 7th birthday party Michael Jackson style, played with Katie and Brynna, ate lobster, saw lots of family and friends and just spent time with Mim and G-gather. It was very relaxing, or at least as relaxing as it can be with Nora in the mix. I guess not very relaxing but at least there were at least 3 adults to 1 Nora at all times.
Alex and I got away for a night and went to Boston. We saw our good friends Laura and Justin for dinner and had some laughs. It was so much fun. Now THAT was relaxing. This was only the 2nd time, yes 2nd time we have gotten away from the girls-together. Ever. The last time was when Emma was 1 and we went to NYC. Alex travels all the time and I've taken a few nights here and there for a girls weekend or something but we really haven't gotten away with the both of us leaving at the same time going to the same place. Crazy I know. We should do it more often.
Anyway, it was great to see everyone in NY. There was lots of other stuff we did but I can't remember right now.
We are back home and getting ready for Emma to start 2nd grade on Monday. Nora lost her 5th tooth tonight before bed. Her bottom fronts are starting to pop through. So weird. We saw the dentist today actually and Nora does not have any cavities and they look good, for the amount of grinding she's done.
Thanks for checking in
Lori
On the helicopter at Hoffman's Playland
Eating a big lollipop
Hanging out at Uncle Mark's camp in a tent with Katie and Lhara
Emma aka MJ
Emma with "Toady" ( she also found a caterpillar and a dead fish)
We were gone for 2 weeks but it felt like more. We did so much. Even though I don't have any pictures of most of it. I was awful about taking pictures. Partly because every time I bring it out, Nora has a fit. She hates the camera now. She used to love it and yell cheese. AND because I just plain forgot to take pics.
We had a great visit with my folks. We played in the backyard (fenced in thank you very much), swam in the neighbors pool everyday, made s'mores in the fire pit, made Mim's house very messy, went to my brother's house on Loon Lake, had Emma's 7th birthday party Michael Jackson style, played with Katie and Brynna, ate lobster, saw lots of family and friends and just spent time with Mim and G-gather. It was very relaxing, or at least as relaxing as it can be with Nora in the mix. I guess not very relaxing but at least there were at least 3 adults to 1 Nora at all times.
Alex and I got away for a night and went to Boston. We saw our good friends Laura and Justin for dinner and had some laughs. It was so much fun. Now THAT was relaxing. This was only the 2nd time, yes 2nd time we have gotten away from the girls-together. Ever. The last time was when Emma was 1 and we went to NYC. Alex travels all the time and I've taken a few nights here and there for a girls weekend or something but we really haven't gotten away with the both of us leaving at the same time going to the same place. Crazy I know. We should do it more often.
Anyway, it was great to see everyone in NY. There was lots of other stuff we did but I can't remember right now.
We are back home and getting ready for Emma to start 2nd grade on Monday. Nora lost her 5th tooth tonight before bed. Her bottom fronts are starting to pop through. So weird. We saw the dentist today actually and Nora does not have any cavities and they look good, for the amount of grinding she's done.
Thanks for checking in
Lori
Monday, July 26, 2010
Fun in the sun
Seattle in the background
Mt. Rainier National Park
On Saturday we drove to Mt. Rainier. It was a long drive but the girls did great. Aunt Kim is visiting from L.A. so we decided to get back to nature. We took a small "hike"-about a mile or so. It would have been super easy with out all the snow on the trail! Nora wasn't a big fan of falling in the snow. She almost made it without a meltdown. We gave her a "piggybank" ride for the last few minutes.
Yesterday we went to brunch and walked along the water. It was so nice out. The girls went back to camp today. Last week of free time for me! We leave for NY on the 11th. I am flying solo so hopefully we won't have any major delays or mishaps. As long as we have the dvd players and Nora's i Touch, we're all set. I would love to get the i Pad but I don't think that is going to happen soon.
I brought Nora to the dentist last week about her teeth falling out of her head like crazy- 3 teeth in 5 days really freaked me out. Apparently she is just an early tooth loser-everything looks good. So hopefully when she gets her permanent teeth, she'll get out of the habit of grinding.
Thanks for checking in
Lori
Mt. Rainier National Park
On Saturday we drove to Mt. Rainier. It was a long drive but the girls did great. Aunt Kim is visiting from L.A. so we decided to get back to nature. We took a small "hike"-about a mile or so. It would have been super easy with out all the snow on the trail! Nora wasn't a big fan of falling in the snow. She almost made it without a meltdown. We gave her a "piggybank" ride for the last few minutes.
Yesterday we went to brunch and walked along the water. It was so nice out. The girls went back to camp today. Last week of free time for me! We leave for NY on the 11th. I am flying solo so hopefully we won't have any major delays or mishaps. As long as we have the dvd players and Nora's i Touch, we're all set. I would love to get the i Pad but I don't think that is going to happen soon.
I brought Nora to the dentist last week about her teeth falling out of her head like crazy- 3 teeth in 5 days really freaked me out. Apparently she is just an early tooth loser-everything looks good. So hopefully when she gets her permanent teeth, she'll get out of the habit of grinding.
Thanks for checking in
Lori
Thursday, July 15, 2010
Snaggletooth-revised
Emma w/out her 2 front teeth.
Nora w/out 2 alternating bottom teeth. Looks lovely.
** Sun. 7/18- She has now lost 2 more in the last 2 days-a top front and the one in the middle on the bottom. I am starting to get a bit freaked out. She'll be seeing the dentist and/or the doctor tomorrow morning! This isn't normal, is it??????
So Nora lost ANOTHER tooth yesterday. She's lost 2 so far. The first one we aren't sure how it got bumped out but she was in the pool yesterday and knocked her mouth on the side. She didn't cry but a bit later I noticed some blood and her tooth was gone.
Her top 2 front teeth are pretty loose, not falling out loose but I can wiggle them. And her 4 bottom teeth have been loose too and now she's down to to 2. She has ground them down to tiny nubbs. I am sure she'll lose one more soon b/c now she's constantly grinding. It sounds quite lovely to the ears by the way. She's been grinding her teeth since she was probably 10 mos. She got her first tooth at 4 mos. so maybe it's not too uncommon to lose her teeth so early. I guess at 4 1/2 kids can start losing teeth, right? She's due to see the dentist in Aug. I guess we'll see what's going on then.
Emma on the other hand just had another visit from the tooth fairy (although she's not REALLY sure if the TF is real or not). She's almost 7 and has lost 6 teeth so far. 4 bottom and 2 top. She's only gotten 2 bottom in so she thays her esthes tho thilly.
Other than teeth trauma not much to report. We are still working on pooping in the potty. Seems to be quite scary for Nora. She's ok peeing but poop is a challenge. She screams and cries and refuses to even try. Hopefully she'll figure it out. I am all about done with diapers. 7 years straight. I need a break!
Thanks for checking in
Lori
Nora w/out 2 alternating bottom teeth. Looks lovely.
** Sun. 7/18- She has now lost 2 more in the last 2 days-a top front and the one in the middle on the bottom. I am starting to get a bit freaked out. She'll be seeing the dentist and/or the doctor tomorrow morning! This isn't normal, is it??????
So Nora lost ANOTHER tooth yesterday. She's lost 2 so far. The first one we aren't sure how it got bumped out but she was in the pool yesterday and knocked her mouth on the side. She didn't cry but a bit later I noticed some blood and her tooth was gone.
Her top 2 front teeth are pretty loose, not falling out loose but I can wiggle them. And her 4 bottom teeth have been loose too and now she's down to to 2. She has ground them down to tiny nubbs. I am sure she'll lose one more soon b/c now she's constantly grinding. It sounds quite lovely to the ears by the way. She's been grinding her teeth since she was probably 10 mos. She got her first tooth at 4 mos. so maybe it's not too uncommon to lose her teeth so early. I guess at 4 1/2 kids can start losing teeth, right? She's due to see the dentist in Aug. I guess we'll see what's going on then.
Emma on the other hand just had another visit from the tooth fairy (although she's not REALLY sure if the TF is real or not). She's almost 7 and has lost 6 teeth so far. 4 bottom and 2 top. She's only gotten 2 bottom in so she thays her esthes tho thilly.
Other than teeth trauma not much to report. We are still working on pooping in the potty. Seems to be quite scary for Nora. She's ok peeing but poop is a challenge. She screams and cries and refuses to even try. Hopefully she'll figure it out. I am all about done with diapers. 7 years straight. I need a break!
Thanks for checking in
Lori
Thursday, July 8, 2010
Summer
It's finally summer in Seattle. We went to the zoo a few weeks ago and the girls got to feed a giraffe. It was really cool. Nora giggled the whole time except when she tried to climb over the barrier and the guy made her stay on this side of it. She was a bit miffed. Emma did her animal report on giraffes so she really thought it was fun to see his long tongue. While we were at the zoo having lunch, Nora took a 15 minute walk without me knowing where she was.(along with 4 other adults) She's sneaky that way. She decided to tour around for a while as I frantically looked for her at the penguin exhibit, the exit and the gift shop. She was at the carousel checking things out. Not worried a bit that she was "lost". FUN times I tell ya.
Camp started this week at Nora's school. Thank goodness. I was going a bit batty there for a while with all the unstructured time on our hands. We (I) don't do well without a schedule and planned activities. There is a lot of whining and crying and complaining that we are bored (by all 3 of us!). Nora qualified for Extended School Year due to potty training and social skills. Emma and Nora both get to go and the bus picks them up at our house! Yay!!!!!!! Nora is doing well with the potty training. She still wont' poop on the potty. The other day she was naked (surprise) in the back yard and came in telling me there was poop on the grass. Sure enough, she'd pooped in the grass just like ollie. nice .
It is supposed to get into the 90's today. Seattle isn't set up for hot weather. No one has AC and/or pools. We'll have to get the sprinkler out and stay cool in the backyard.
Alex and I celebrated our 8th anniversary last night and went out for a wonderful dinner with our good friends. It was lovely. Seems like we've been married a whole lot longer than 8 years. We've been together for 15 years so that could be why.
We put a new navigation system and back up camera in my swagger wagon so I don't run anyone over. It could happen.
Thanks for checking in
Lori
Thursday, June 24, 2010
Clothing optional
Nora will not keep her clothes on. She runs around nudie all day long. It started with skinny dipping in the little pool in our back yard but now she answers the door without any pants on, she goes on the slide buck nekked, has lunch in her birthday suit. But she has been using the potty with very few accidents!!! I am getting a bit frazzled trying to keep her in undies but at least it is in our very own nudist colony, not in public (yet).
Friday, June 11, 2010
Bison and potty
Last weekend we actually saw some sunshine. It has been a very rainy spring here in the NW. We took a drive to the NW Trek to see some cool animals. They have a trolley you can ride on and the animals are all free range around you. We saw bison, elk, mtn. goats, deer, swans, ducks and a few more I can't remember. Nora did ok on the hour long ride. She was somewhat interested but then wanted to play w/ my i phone. Oh well. At least no meltdowns.
We also strolled around to check out the other exhibits. We saw coyotes, wolves, bears, cougars, lynx, foxes, eagles, owls, and Emma's favorite, a chipmunk. It was a fun family day for sure.
Nora has been doing great on the potty lately. She stays dry at school (but her awesome teachers take her frequently during school hours.) I, on the other hand, tend to forget so she has accidents galore here but she is learning. She will use the potty if we remember to actually have her go. She could care less about the m&m's that I have been using as a reward. She just likes to cheer and flush. So hopefully diapers will be done by the end of summer??? Positive thinking.
Emma finishes 1st grade and is going to be in 2nd grade!!!! Nora has 1 more year of preschool then Kindergarten. Time flies. Our summer starts next Wed. Yikes. They are both going to go to the camp at the EEU in July. Nora qualified for summer school b/c of potty training. Yay! So she gets to have busing provided and Emma can hop along with her. Emma is doing one other camp and some swim lessons. Then we will be in NY for 2 weeks, Emma turns 7, and hopefully I will be able to keep everyone entertained with out school to give me a bit of a break. I could never home school. It would drive me batty.
That's all that is going on around here.
Congrats to my nephew Michael for graduation college this weekend from Ohio State. He was born as I was starting college. Crazy! Seems like yesterday.
Lori
Friday, May 28, 2010
Yo What?
Guess who is going to see Yo Gabba Gabba Live in November... Yup-we are. At the Tacoma Dome. It will be a party in our tummies for sure!!! So excited. Hopefully we'll be able to get the Muno and Toodee dolls that we are missing!
Yahoo
Lori
Tuesday, May 25, 2010
Finally!
Monday, May 10, 2010
Come and gone
Nora 4 years old
Nora after 7 weeks on ACTH-16 months old
So Nora's 3 year anniversary for being seizure free has come and gone. I didn't even realize it. Is that good or bad?
May 2nd, 2007.
She had been on ACTH for 7 days and all the spasms were gone. I still had to give her daily injections for 8 more weeks. She was huge, didn't sleep, drank gallons of milk, acted like a zombie, got really hairy, had high blood pressure and scared the crap out of us. I had no idea what to think or what to hope for or what would happen to her. Would she walk? Talk? Live?
To think that today she is such a loving, vibrant, joyful little girl is unbelievable to the person I was 3 years ago. It was so hard to even hope that she'd be where she is.
This weekend we went around the block on her trike and she actually PEDDLED!!!!! This is huge. We've been pushing her on that damn bike for 2 years and nothing. She actually held onto the handle bars and peddled her feet. She made herself move independently. I was so excited. AND she stayed on the bike the whole time, didn't make a run for the street or in the opposite direction of me.
She got off the bus today in the same pants she went to school in. Her bus driver said that her teacher said that she used the big girl toilet today. They have been putting her in underwear and changing her a few times a day when she west her pants. But maybe she actually peed in the potty? I have an email into her teachers so I can get the scoop. I am sure you all will get an update:)
She just called for help from the kitchen-"Nora get down please" She was stuck up on the counter that she had climbed to grab a banana. How about that for communication! She is amazing. Truly.
Mother's day was nice, normal but nice. No breakfast in bed or any big surprises. Just some good times with my 2 girls. A walk around the block, yummy brunch (that I made), & sushi for dinner. Emma made me lots of cards and crafts. Nora's teacher made a card with pictures of Nora signing I Love You and every time Nora sees it she says "I love you" and gives me a big
kiss. Doesn't get any better than that.
Happy Mother's day to all the mommy folks out there and a special Happy Day to my mom. I love you!!
Lori
Nora after 7 weeks on ACTH-16 months old
So Nora's 3 year anniversary for being seizure free has come and gone. I didn't even realize it. Is that good or bad?
May 2nd, 2007.
She had been on ACTH for 7 days and all the spasms were gone. I still had to give her daily injections for 8 more weeks. She was huge, didn't sleep, drank gallons of milk, acted like a zombie, got really hairy, had high blood pressure and scared the crap out of us. I had no idea what to think or what to hope for or what would happen to her. Would she walk? Talk? Live?
To think that today she is such a loving, vibrant, joyful little girl is unbelievable to the person I was 3 years ago. It was so hard to even hope that she'd be where she is.
This weekend we went around the block on her trike and she actually PEDDLED!!!!! This is huge. We've been pushing her on that damn bike for 2 years and nothing. She actually held onto the handle bars and peddled her feet. She made herself move independently. I was so excited. AND she stayed on the bike the whole time, didn't make a run for the street or in the opposite direction of me.
She got off the bus today in the same pants she went to school in. Her bus driver said that her teacher said that she used the big girl toilet today. They have been putting her in underwear and changing her a few times a day when she west her pants. But maybe she actually peed in the potty? I have an email into her teachers so I can get the scoop. I am sure you all will get an update:)
She just called for help from the kitchen-"Nora get down please" She was stuck up on the counter that she had climbed to grab a banana. How about that for communication! She is amazing. Truly.
Mother's day was nice, normal but nice. No breakfast in bed or any big surprises. Just some good times with my 2 girls. A walk around the block, yummy brunch (that I made), & sushi for dinner. Emma made me lots of cards and crafts. Nora's teacher made a card with pictures of Nora signing I Love You and every time Nora sees it she says "I love you" and gives me a big
kiss. Doesn't get any better than that.
Happy Mother's day to all the mommy folks out there and a special Happy Day to my mom. I love you!!
Lori
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